Cancer Entangled: Anticipation, Acceleration, and the Danish State 9781978826885

Citation preview

C ANCER ENTANGLED

C ANCER ENTANGLED Anticipation, Acceleration, and the Danish State

edited by

rikke s a nd a nder sen a nd m a rie lo uise tørring w ith a n a f ter w or d by

Lenore M a nder son

rutger s uni v er sit y p r ess

New Brunswick, Camden, and Newark, New Jersey London and Oxford

 Rutgers University Press is a department of Rutgers, The State University of New Jersey, one of the leading public research universities in the nation. By publishing worldwide, it furthers the University’s mission of dedication to excellence in teaching, scholarship, research, and clinical care. 978-1-9788-2685-4 (cloth) 978-1-9788-2684-7 (paper) 978-1-9788-2686-1 (epub) 978-1-9788-2688-5 (pdf) Cataloging-in-publication data is available from the Library of Congress. LCCN 2022037007 A British Cataloging-­in-­Publication rec­ord for this book is available from the British Library. This collection copyright © 2023 by Rutgers, The State University of New Jersey Individual chapters copyright © 2023 in the names of their authors All rights reserved No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, or by any information storage and retrieval system, without written permission from the publisher. Please contact Rutgers University Press, 106 Somerset Street, New Brunswick, NJ 08901. The only exception to this prohibition is “fair use” as defined by U.S. copyright law. References to internet websites (URLs) ­were accurate at the time of writing. Neither the author nor Rutgers University Press is responsible for URLs that may have expired or changed since the manuscript was prepared. rutgersuniversitypress​.­org

CONTENTS



Introduction: Crafting Cancer Anticipations rikke sand andersen

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1

The Waiting Time Paradox: Intensifying Public Discourses on the Vital Character of Cancer Waiting Times marie louise tørring

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2

Accelerated Diagnostics in Slow Motion: Ordinary Dramas of Life and Death in the ­Middle Class sara marie hebsgaard offersen

42

3

“What If It Is Just Hiding?”: Care Seeking and Symptom Expansion rikke sand andersen

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Cancer, In­equality, and Expectations of Sameness camilla hoffmann merrild

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5

The Ghost of Cancer in the Clinic benedikte møller kristensen

96

6

Making Cancer Patient Pathways Work rikke aarhus

112

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“Keeping an Eye on It”: Infrastructures of Lung Cancer Uncertainty and Certainty michal frumer

129

8 ­

Silent Cancer Vaccine Encounters: Young W ­ omen’s Experiences with Suspected HPV Vaccine Adverse Reactions stine hauberg nielsen

147



Afterword: Urgency, Modernity, and Pace in Cancer Care lenore manderson

166

Acknowl­edgments 181 Notes on Contributors 183 Index 187

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C ANCER ENTANGLED

INTRODUCTION Crafting Cancer Anticipations RIKKE SAND ANDERSEN

In 1743, the Prus­sian thinker Johann Jacob Schmidt wrote that cancer was a disease that was obvious to the senses. Cancerous m ­ atter had the power of infecting the ­whole body. Often it would break through the skin, and putrid fluids or solid secretions would ooze and spread horrific stenches of bodies in decay: “corrupt it and make it unable to perform the natu­ral secretions and useless for nutrition” (cited in Stolberg 2014, 60). T ­ oday, more so in the Global North than in the South, as depicted by Julie Livingston (2012) and Dwaipayan Banerjee (2020), cancer is considered less obvious to the senses. In the Global North cancer is increasingly regarded as a ­silent killer that can be controlled if some form of intervention is carried out in due time (Arono­witz 2001; Jain 2013; Offersen et al. 2018). As ­w ill become evident throughout this volume, expressions such as “my doctor listened, and I was diagnosed in time, and that was good,” or “I was very surprised to learn that I was sick; I did not ­really feel sick,” are often heard in the context of cancer diagnosis, testifying to the link between timely diagnosis and cancer survival that has been forged in the North during the past de­cade (Tørring 2014; Andersen 2017). Readers from the United Kingdom, Spain, Australia, Sweden, or Denmark are prob­ably all familiar with this change in the way in which cancer is perceived. Commuters in London, farmers in Australia, and ­people waiting in local general practice clinics all over Scandinavia have been targeted in cancer awareness campaigns urging them to avoid any delay, such as a warning found on a blue box of candy (figure I.1). Sara Marie Hebsgaard Offersen, whose work is found in this volume, photographed the box during her fieldwork studying the ways ­people in northern Jutland approach their health care system with cancer-­related questions; it says, Jo før Jo bedre i almen praksis [The sooner the better in primary care]. ­There are no specific references to cancer on the box, but the mere mention of time—or being on time—is to many of us an indirect reference to cancer. This is what this volume is about. Through detailed ethnographic accounts, this volume 1

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figure I.1. Candy box with a public health message: the sooner the better in primary care. (Source: Sara Marie Hebsgaard Offersen)

brings together ethnographic work on early cancer diagnosis initiatives as they ­were implemented in Denmark around the turn of the millennium, and it contributes to a growing body of anthropological lit­er­a­ture, suggesting that new insights may be gained if we reframe the temporality of disease control through the concepts of anticipation and acceleration (Adams, Murphy, and Clarke 2009; Offersen et al. 2018; Stephan and Flaherty 2019). Cancer control, which we—in line with medical historian, David Cantor—­ regard as initiatives or programs that are structured around attempts “to identify the disease or the risk of the disease at the earliest pos­si­ble stage” (2008, 2), has been increasingly mobilized in recent de­cades by the growth of predictive and molecular medicine (Gibbon 2017; Keating and Cambrosio 2014) or what cancer

Introduction 3

health promoters often refer to as early detection interventions (cf. Pérez 2021). Although cancer control is characterized by multiple preventive and therapeutic interventions (Bogicevic et al. 2021; Manderson 2015; Pérez, Gibbon, and Lanceley 2022) that are socially and historically situated rather than by a single unified body of knowledge and practice, one of the central developments within twenty-­ first ­century cancer control has been the stabilization of a predictive health care complex,1 which has generated groups of at-­risk patients enrolled in secondary prevention and early detection programs within hospital and general practice settings (Heinsen, Wahlberg, and Petersen 2021, 2). In this context, in recent de­cades anthropologists have championed a research agenda that explores how the promises of ge­ne­tics and molecular medicine are transforming the ways in which cancer control is experienced in dif­fer­ent environments as well as shaping the efforts ­people make to understand what is happening to them and what they are expected to do in order to avoid getting or ­dying from cancer (Frumer et al. 2021; Gibbon 2015; Koch and Svendsen 2005; Lannin et al. 2002; Lock 1998; Svendsen 2006). However, only a few anthropologists have paid attention to the more publicly oriented forms of governance, which encourage symptom awareness and early health care seeking through campaigns urging ­people not to delay, which (often aggressively) address public care-­seeking be­hav­iors (Arono­witz 2001; Toon 2008) and which manifest in changes in health care infrastructures such as the implementation of fast-­track cancer diagnostic pathways (Mæhle et al. 2021; Sidenius et al. 2020). This lack of research attention is surprising b­ ecause approximately 80 to 90 ­percent of all cancers diagnosed in the Euro-­American context are diagnosed ­because an individual has sought medical care on the basis of embodied suspicions of illness such as symptoms or worries (Rubin et al. 2015). Overall, anthropologists have focused a good deal on at-­risk patients and how ­people live with cancer, but have paid ­little attention to the production of “the symptomatic patient” (Andersen 2017; Andersen, Nichter, and Risør 2017). According to the medical historian David Cantor, the term “control” was carefully chosen by health promoters in the late nineteenth and early twentieth centuries when early cancer detection and treatment was made a cornerstone in Euro-­ American health policies: the disease or the risk of the disease would always be pre­sent in the population. It would always be in need of management or control. Thus, despite vari­ous “wars,” “campaigns,” and “crusades” to “conquer” the disease, the best that anticancer programs generally offered was the possibility of effective intervention if a cancer—or a precancerous condition—­established itself in the body and was discovered early. To this end, they sought not only to control the disease therapeutically, but also to reform the be­hav­iors, individuals, organ­izations, and social structures that encouraged delay. (2008, 2)

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In this context, early detection is often defined as interventions such as screening and ge­ne­tic testing that target presymptomatic cancers, while early diagnosis focuses on detecting symptomatic patients as early as pos­si­ble (Arono­witz 2001). Early detection relies on trained professionals and technology to detect molecular changes and act, but early diagnosis relies primarily on ­human beings (trained and untrained) being attentive and spotting embodied changes (coughing, itching) that may be indicative of cancer growth. As ­will become clear throughout this volume, the division between early diagnosis and early detection does not always make sense in practice (cf. Bogicevic et al. 2021; Cantor 2008). But what it alludes to is a temporal distinction which to some degree has been neglected in the anthropological lit­er­a­ture. While early detection interventions (such as screening programs and ge­ne­tic testing) target selected populations and distinctions between t­ hose at risk and t­ hose who are not at risk can be identified (though sometimes randomly), early diagnosis initiatives (such as campaigns warning ­people not to delay), are directed ­toward entire publics. Early diagnosis initiatives, this volume suggests, serve as a temporal, embodied, and repre­sen­ta­tional space, not only for p­ eople living with cancer risks or ­dying of cancer but for every­one and/or ­every body. Rephrasing Lochlann Jain’s evocative statement that cancer is “a total social fact” ( Jain 2013) that is pre­sent in most parts of social life in the Euro-­American context, reminding us that we all “live in prognosis,” this volume suggests that the health policies of early cancer diagnosis teach us that we all live in the anticipation of cancer. Moreover, the temporal distinction between early detection and early diagnosis testifies to an abundance of dissonance and elusiveness that adheres to cancer control (Frumer et al. 2021; Gibbon 2013; Jain 2013; McMullin and Weiner 2008) and con­temporary cancer mythologies (Offersen et al. 2018, 33). Despite the fact that in a Euro-­American context cancer attracts more attention and scientific and state resources than almost any other disease, it is still a conundrum (Keating and Cambrosio 2014; Pérez, Gibbon, and Lanceley 2022). “Cancer can kill, this is the only fact that makes it concrete” ( Jain 2013, 2). As previously noted, con­temporary cancer control interventions primarily engage with cancer as a s­ ilent killer, meaning that cancer is depicted as a disease that should be predicted and detected before it is vis­i­ble to the senses. In the Euro-­ American context the elusive dangers of cancer are rarely represented through images of bodily decay and suffering such as ­those presented by Johann Jacob Schmidt in 1743. Rather, images of the suffering and decaying body have by large been eradicated from con­temporary cancer control discourses. In this volume we show that early diagnosis initiatives still serve as a productive space for embodied attention and embodied anticipations. The cancerous body of our con­temporary world differs in radical ways from the corrupt and decaying body portrayed in e­ arlier times. The cancerous body of our con­temporary world is the body that is still in good health: strong enough to carry the burden of treatment and to engage in the practices of recovery. In this con­

Introduction 5

temporary body the cancerous growth has barely made itself vis­i­ble to the senses. For early cancer diagnosis initiatives to be successful they must save the body from cancer before it has decayed. Before I develop more on this let me situate the volume within the anthropological cancer lit­er­a­ture.

Cancer Risk In recent de­cades, anthropologists working on cancer control and the expansion of the predictive health care complex have shown how the promise of technoscientific developments such as the discovery of candidate biomarkers (Gibbon and Aureliano 2018; Keating and Cambrosio 2014; Pérez 2021), vaccines, and novel drugs have modified the temporality of cancer risk experiences (Lock 1998), treatments, and the clinical pathways that patients follow (Bogicevic et al. 2021; Nielsen, Andersen, and Tørring 2020). As also discussed by Lenore Manderson in the afterword to this volume, this lit­er­a­ture covers a wide range of subthemes: from the introduction of tamoxifen-­based chemoprevention for breast cancer around the turn of the millennium (Fosket 2004) to the birth of screening and vaccination modalities (Gibbon 2017; Lock 1998; Nielsen, Andersen, and Tørring 2020; Schoenfeld 2022; Wailoo 2010) and what medical historian Ilana Löwy has called morphological prediction (Löwy 2007, 2010). The Danish anthropologist Ivana Bogicevic and her colleagues (2021) have recently shown that personalized medicine in the context of experimental oncology applies nonhereditary ge­ne­tics to predict the degree of malignancy or benignity in tumors. Nonhereditary ge­ne­tics has become a resource for the specification of diagnostics and treatments in oncology as well as being part of the medical sign system that determines ­whether a given person is considered sick or healthy. While this testifies to the expanding economy of hope (Good 2001) placed in biomedical intervention in the field of cancer, it also attests to the increasing complexity that patients, relatives, and health care professionals face. As has been noted by Gibbon (2017) and ­others (Gibbon and Aureliano 2018; Keating and Cambrosio 2014; Nelson, Keating, and Cambrosio 2013), recent developments in cancer prediction reflect and fuel the extremely fluid relationship between research and cancer care. Cancer patient pathways are increasingly “oriented around protocols and participation in protocol formulation and management has consequently become a routine (and highly politicized) activity for research scientists, practicing oncologists and patient activists” (Nelson, Keating, and Cambrosio 2013, 162). Such insights w ­ ere recently confirmed in an introduction by anthropologists Ignacia Arteaga Pérez, Sahra Gibbon, and Anne Lanceley (2022) in an exploration of con­temporary, global shifts in cancer care values: Personalized medicines in the changing terrains of cancer care, where personalization means not only use of genomic information to guide therapeutic decisions, but also an ability to fully participate and navigate new experimental regimes of

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care, underscores [sic] the need for patients, relatives and health professionals constantly to negotiate the relationship between them as individual citizens and as part of a “target population,” as they are seen by the state. (126)

This lit­er­a­ture testifies to the fact that technoscientific developments within ge­ne­tics and molecular medicine have not only transformed and multiplied cancer phenomena (Bogicevic et al. 2021; Gibbon 2017; Mathews and Burke 2015; Pérez, Gibbon, and Lanceley 2022) but also produced increasingly porous bound­aries between clinics and their sociopo­ liti­ cal, everyday environments (Heinsen, Wahlberg, and Petersen 2021; Schoenfeld 2022), which has been shown to not only inform global and local health inequalities (Gibbon and Aureliano 2018) but also shape social organ­ization and pro­cesses of racialization, immigration, and belonging (Armin 2015; Sargent and Benson 2019; Svendsen 2006). Based on research among Danish ­women and clinical ge­ne­tic risk profiling, anthropologist Mette Nordahl Svendsen (2006) shows, for example, how cancer ge­ne­tic counseling intersects with kinship experiences. Through counseling, new notions of relatedness are constructed and old ones displaced, not in any deterministic sense but “when, in cancer ge­ne­tic counselling, biological relations are mapped and risks and preventive options of biological relatives are discussed, what occurs is a reconfiguration of kinship knowledge, and how knowledge on ge­ne­tics is social,” she suggests (2006, 151). In a similar fashion, based on research in cancer ge­ne­tic clinics in Brazil, Sahra Gibbon describes how predictive ge­ne­tic testing not only provides inflicted individuals with uncertainty or alters their embodied experiences but also draws on colonial histories of ancestry and ideas of gen­er­a­tion­ally connected personhood (Gibbon 2013, 9). Through the notion of generational personhood, Gibbon describes how embodied cancer risks are connected to generational histories, such as sins conducted by ancestors or the difficult histories connected with slavery. Overall, this research testifies to the vari­ous ways in which cancer control produces at-­risk groups while being both a global and a sociohistorically situated phenomenon.

Cancer Chronicity and Survivorship Lately “chronicity” has been introduced as an impor­tant temporal attribute in the reframing of cancer (Heinsen, Wahlberg, and Petersen 2021; Pérez, Gibbon, and Lanceley 2022; Schoenfeld 2022). In line with Manderson’s early work on chronic illness (Manderson and Smith-­Morris 2010), the term “chronic” is understood as a temporally bound condition in which p­ eople live with a disease that has become treatable but not curable. And it is accompanied by par­tic­ul­ar modes of experience. Cancer chronicity is embedded in local, biomedical notions of time, as discussed convincingly by Naomi Schoenfeld in her work on the notion of cancer cronicidad in Cuba (2022), and it is a testament to the differential distribution of resources for cancer diagnostics and treatment (Sargent and Benson 2019; Banerjee

Introduction 7

2020; Hansen and Tjørnhøj-­Thomsen 2008). ­People who live in sociopo­liti­cal contexts characterized by diagnostic and therapeutic efficiency such as the United States, Denmark, or France increasingly live longer lives as cancer survivors (Greco 2021; Hansen and Tjørnhøj-­Thomsen 2008; Sidenius et al. 2019; Stoller 2004). In this lit­er­a­ture, the concept of chronicity is tied to conceptual discussions on cancer survivorship and how lived experiences of cancer are s­ haped by broader sociopo­liti­cal f­actors, biology, and the intimacies of close social relations (Greco 2021; Sargent and Benson 2019). This lit­er­a­ture also highlights the vari­ous pro­ cesses of disruption and transformation that constitute chronic cancer illness experiences. Paul Stoller (2004), Fiona Harris (2015), and Cinzia Greco (2021), in dif­fer­ent sociopo­liti­cal contexts, describe the productivity of battlefield meta­ phors of cancer, and how the ethos of efficiency and entrepreneurship pre­sent in con­temporary Euro-­American capitalism (Greco 2021) produces certain forms of survivorship experiences. Greco (2021), for example, describes how ­women in the United Kingdom and France—­despite the promise of survival in con­temporary oncology—­are uncertain about their f­utures and think that they live “tiny lives” (2021,136) due to their inability to be productive and live active social lives.2 Recently it has also been suggested that the concept of chronicity informs a temporal reframing of cancer prediction (Frumer et al. 2021; Heinsen, Wahlberg, and Petersen 2021; Pérez, Gibbon, and Lanceley 2022). Although a focus on cancer control and the introduction of new treatment approaches have prolonged life with cancer, they have also prolonged and altered the temporality of life at risk of cancer (Manderson 2015). As indicated previously, anthropologists and social scientists have often been inspired by vari­ous readings of what Foucault introduced as biopower (Foucault 2008; Rabinow and Rose 2006), exploring the impact of predictive knowledge with regard to the production of at-­risk subjects. With the exception of a few studies (Frumer et al. 2021; Offersen et al. 2016), much less attention has been given to approaches that are sensitive ­toward first-­ person, embodied experiences or the unpredictability and ambiguity that also come with what Laura Louise Heinsen and colleagues have called “surveillance life” (Heinsen, Wahlberg, and Petersen 2021). Based on their research among families with Lynch syndrome, a common cause of hereditary colon cancer, Heinsen and colleagues have suggested that we understand surveillance for cancer ge­ne­tic risk through the concept of chronicity, and they explore how ­people live with chronic risk—­even as they remind us that chronic risk is not the same as chronic illness. Being ­under surveillance, they suggest, is a chronic and thus temporal pro­ cess of staying healthy; it implies a recalibration of familial bonds and responsibilities “while leading lives punctuated by regular medical check-­ups” (Heinsen, Wahlberg, and Petersen 2021, 13). A focus on chronicity, they argue, reminds us to ask how ­people live with surveillance. Using the similar concept of “in the meantime,” Michal Frumer and colleagues (2021) argue that greater attention should be devoted to the socially situated

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ambiguities and flexibilities that characterize p­ eople’s experiences of being at risk. Continuous testing for lung cancer, due to morphological changes appearing in computed tomography (CT) scans, intersects with ordinary activities, hopes, and aspirations in which p­ eople reflect on and continuously adjust their social relations and visions of the good life and the everyday. Inspired by Veena Das and o­ thers writing on ordinary ethics, “life in the meantime,” they suggest, “is characterized equally by a dramatic mode of being (waiting for death) and an ambiguous mode of being (feeling quite well)” (5). A reframing of cancer control through chronicity exemplifies how anthropologists are countering perspectives on cancer control as interventions that produce more or less stable at-­risk identities with perspectives that focus on how cancer control shapes relational and temporal modes of being.

Anticipating Cancer This discussion, though brief, illustrates that cancer control is primarily studied through the gatekeeping concepts of “being at risk” and “chronicity,” which have privileged attention to the productive role of technoscientific technologies and to life with cancer. In this volume we suggest another temporal reframing: emphasizing a focus on how p­ eople experience and anticipate cancer before a diagnosis has been given or a prediction has been made. Through the guiding tenet of anticipation, our goal is to motivate and orientate an experiential, first-­ person approach that allows us to explore how cancer is anticipated before it has materialized as a disease or a risk. Attending to the differences in how such anticipations manifest can nuance and complicate how we understand cancer control, we suggest. As described by Vincanne Adams and colleagues (2009), and Andrew Lakoff (2017), anticipation has long been a component of biopo­liti­cal practice. Centering around the notions of anticipatory regimes (Adams, Murphy, and Clarke 2009) and regimes of global health security (Lakoff 2017), each illustrate how regimes of biopo­liti­cal security and simulation bring f­ uture disasters into the pre­ sent in order to learn how to or­ga­nize ourselves to meet the potential disasters they predict. “Anticipation,” Adams and colleagues write, “is a moral economy in which the f­ uture sets the conditions of possibility for action in the pre­sent, in which the ­future is inhabited in the pre­sent” (2009, 259). As I have indicated and as I w ­ ill develop more, early diagnosis initiatives are indeed acts of constructing ­futures (cf. Lock 1998). They represent power­ful speculative forecasts (Adams, Murphy, and Clarke 2009, 247) that foretell a situation in which ­future cancerous scenarios become part of a pre­sent. As ­will be discussed by Camilla Hofmann Merrild (this volume) in her work on health care seeking and cancer anticipations among working-­class families, and by Rikke Aarhus (this volume) in her work on fast-­track cancer pathways in large university hospitals, early diagnosis initiatives bring cancers that have not yet occurred into local worlds

Introduction 9

in the shape of awareness campaigns and health care infrastructures, and as embodied forms of attention, affect, and uncertainty. Although the volume focuses to some extent on local intersections of po­liti­cal discourse and biomedical knowledge (cf. Tørring, Nielsen and Andersen, this volume), we focus less on how ­humans construct their ­futures and more on how the shaping of less cancerous ­futures leads to dif­fer­ent (and highly variable) kinds of anticipations and how such anticipations are lived and felt in the pre­sent. In what is, according to Christopher Stephan and Devin Flaherty (2019), one of the most common uses in the existing lit­er­a­ture, anticipation is often equated with speculation or prediction, and sometimes with an affective state of apprehension, excitement, or anxiety: Querying anticipation as an episteme provokes consideration of an array of affective states not only anticipation and preparation (tied to hope), but also surprise, uncertainty, anxiety, and unpreparedness (tied to fear). The unknown, for which no claims have yet been made, plays an integral role. (2)

Focusing on anticipation more as acts of speculation than as states of excitement (cancer is rarely awaited with excitement), we explore the par­tic­u­lar configurations of practices (e.g., health care seeking, diagnostics), institutional frameworks (e.g., clinics, infrastructures, awareness campaigns), and cultural values (e.g., notions of patienthood and citizenship) that differentially inflect patterns of anticipation (Gibbon 2013; Stephan and Flaherty 2019). In par­tic­ul­ ar, we elaborate an approach that privileges the role of the temporal structures that mediate anticipatory experiences, needs, and decisions (Rosa 2020, 28, 114–115). In cancer control, anticipation and temporality intersect in the sense that it is through anticipated cancer (materializing in statistics, awareness campaigns, infrastructures, and affect) that the ­future arrives in the pre­sent. “The telescoping of temporal possibilities is a crucial part of anticipation,” as noted by Adams and colleagues (2009, 249). As I w ­ ill describe (cf. Tørring, Aarhus, Kristensen, this volume), early cancer diagnosis interventions increasingly place cancer control in an ethical register (Lakoff 2017) that involves acceleration (Rosa 2020) and time-­ related meta­phors such as “do not delay,” “urgency,” and “fast-­track cancer pathways” (Andersen 2017). As discussed by Marie Louise Tørring (this volume), Rikke Aarhus (this volume), and myself (Andersen, this volume), a striking example of the early diagnosis rationality in action is the assignment of time as a cultural proxy for biological tumor growth and a strong focus on time management. Time is no longer something that merely passes us by: time has been transformed into a cultural signifier, or an imaginative guide to a less death-­infused societal trajectory. In order to control cancer, the passing of time must be contained at all costs (cf. Tørring 2017). The authors of this volume thus take up the dual agendas of carefully attending to the macro-­political contexts and circumstances in which accelerated cancer

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diagnostic infrastructures make themselves vis­i­ble and reflecting on the nature of the specific forms of embodied experience and anticipation that are brought to life by the early cancer diagnosis paradigm. However, we do not approach anticipation (or acceleration) as contained domains of study; rather we use them to frame a diverse range of thematic and theoretical perspectives. The concepts frame the tenets of the volume, but each contributing author approaches t­ hese issues in her or his own way, crafting sometimes more distinctive or subtle theoretical divergences regarding the analy­sis of cancer control in the context of the Danish welfare state.

How Time Came to ­M atter Approximately 5.8 million ­people of vari­ous ages and ethnic backgrounds currently reside in Denmark. In 2020 45,205 of them received their first cancer diagnosis, and approximately 280,000 individuals w ­ ere undergoing treatments for cancer. Extrapolations suggest that the numbers w ­ ill increase to 400,000 cancer patients in 2030, and the government expects that approximately 10 ­percent of the adult population ­will be in cancer remission by this time.3 Since the establishment of what we have come to know as the welfare state in the years a­ fter World War II, changing governments have expanded the public health care sector. T ­ oday, the government’s health care expenditure amounts to approximately 10 ­percent of the gross domestic product, which is mainly funded by taxes that are redistributed by the government. The Danish welfare state is built upon a princi­ple of universal coverage, which means that ser­vices such as childcare, education and student grants, health care, and social benefit schemes are financed through taxes, and many ser­vices are allocated irrespective of an individual’s income. ­Because universal coverage is regarded as a way of equalizing living conditions and eliminating social risks across the life cycle, Danish society has a strong public sector with institutions that serve ­people from the cradle to the grave. The distribution of taxes and social security are often described as a contractual model of reciprocity between the state and the public (Offersen, Vedsted, and Andersen 2017). Since the 1980s, neoliberal ideologies of governance with accompanying welfare state reforms have made their presence felt in Denmark. As ­will become clear in the chapters by Sara Marie Hebsgaard Offersen and Camilla Hoffmann Merrild, the consequences of this development are unevenly distributed. Housing reforms, work force reforms, restricted access to social benefits, and the introduction of less generous unemployment insurance schemes have made t­ hings increasingly difficult for low-­income groups, who often strug­gle to pay their share of the cost of medi­cation and other out-­of-­pocket costs (such as transportation) when they are ill (Merrild, Vedsted, and Andersen 2017). Also, as in other parts of Eu­rope, health inequalities in general are increasing, and this also applies to inequalities in cancer incidence and survival (Merrild, Vedsted, and Andersen

Introduction 11

2017). In terms of geography, health resources are, however, still fairly equally distributed across the country; despite increasing rates of medical travel (i.e., some Danish cancer patients travel to the United States or Germany in search of experimental treatments), intranational mobility (­people crossing the country in search of efficient treatment) is not as widespread a phenomenon as in Italy, for example (Greco 2019). Despite deepening social inequalities in terms of health, for the past fifty years welfare and health reforms have offered social security as well as preventive and life-­extending interventions, which have extended the average life expectancy among Danish citizens. An average w ­ oman in Denmark can now expect to live to the age of 83.6 and an average man to the age of 79.5. As cancer prevalence rises exponentially with age, increasing life expectancy rates have added a demographic challenge to cancer control (Tørring 2017). This is part of a global tendency: the World Health Organ­ization (WHO) recently singled out aging as one of the main global challenges to health care. Across the globe, aging populations have helped shape how governments think about cancer control (Livingston 2012; Mathews and Burke 2015). As has been continually shown in anthropological work on cancer, changing demographics, shifts in global cancer discourses, and the development of novel diagnostic and therapeutic values often transform the place of cancer in society. In Denmark, an aging population and extrapolations of cancer growth ­were decisive in legitimizing the massive attention that was given to cancer control in the late 1990s and early 2000s (Tørring 2017). However, it was a structured competition ( Jain 2013, 116) between nations and health care systems that instituted time and acceleration as the dominant structuring princi­ples in cancer control. In the late 1990s, comparative studies between Nordic and Eu­ro­pean cancer registries consistently found lower survival rates among cancer patients in Denmark than among patients from countries with similar health care systems and national expenditures on health care. Also, in comparison with what epidemiologists call “other comparable health care systems,” such as ­those of Canada or Australia, cancer in Danish patients was generally diagnosed in the form of late-­stage tumors. In 1999 the Danish epidemiologist Hans Storm, in a study of survival rates among lung cancer patients, concluded, Part of the observed survival differences could be explained by a less favorable stage distribution in Denmark, combined with a slightly lower relative survival rate for ­those with metastatic disease. Differences in treatment are unlikely to explain the findings, although delays in diagnosing and treating patients in Denmark compared with neighboring countries could partially explain the lower patient survival in Denmark. (Storm et al. 1999, 430)

Similar findings and conclusions ­were repeated throughout the early years of the new millennium (cf. Kjærbye-­Thygesen et al. 2005).

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Disease-­specific studies of ovarian cancer, lung cancer, and breast cancer repeatedly confirmed the occurrence of massive, early, and unwanted deaths among Danish cancer patients. It was often stated that “part of it may be explained by a less-­favorable distribution of stage at diagnosis” (Kjærbye-­Thygesen et al. 2005, 1011). In the lingua franca of cancer epidemiology, “less favorable stage distribution” means delay. In other words, late diagnosis was considered a contributing ­factor to the excessive deaths. As w ­ ill be further debated by Tørring (this volume), epidemiological focus on the cancer delay prob­lem alone did not transform the prob­lem of delay into a wider po­liti­cal economy of hope (Good 2001). This required further public and media attention, and it was only when the media caught on in the early years of the millennium and rejuvenated an ongoing po­liti­cal agenda regarding hospital waiting time by effectively linking poor cancer survival rates with the prob­lem of delay that cancer diagnostics was transformed into a potent po­liti­cal issue. In the early years of the millennium, politicians increasingly supported the cancer case, the media called on general prac­ti­tion­ers to focus more on the symptoms presented by their patients, and hospitals ­were criticized for letting cancer patients die “due to mere sloppiness [simpelt sløseri],” as it was phrased by one tabloid paper. In 2007, in what has since become known as the 6 March Meeting, one of the most influential patient advocate organ­izations, the Danish Cancer Society, succeeded in bringing together the oncological medical socie­ties, leading politicians, and patient organ­izations at a meeting that was symbolically situated at Christiansborg Palace in Copenhagen, the seat of Folketinget, the Danish Parliament, with an 800-­year history as Denmark’s center of power. During that meeting, delays in diagnosis ­were presented as the main reason for poor cancer survival. The massive attention on what the media referred to as the cancer waiting time scandal, and the 6 March Meeting, led to a po­liti­cal pro­cess in which the prime minister, Anders Fogh Rasmussen, declared cancer to be an “acute condition” (Tørring 2014). National health care authorities eventually ­adopted a seven-­point plan for cancer that included the allocation of vast amounts of resources and the introduction of fast-­track cancer pathways and cancer awareness campaigns (see Aarhus and Andersen, this volume). From 2007 onward, the Danish health care system underwent an unparalleled reor­ga­ni­za­tion, and an explic­itly moral and jurisdictional structure of timely cancer detection was negotiated without consideration of the existing capacity and resources. Such a reor­ga­ni­za­tion and such vast allocations of resources ­were unparalleled in the history of the Danish health care system at the time.4 Through a series of ethnographies exploring cancer awareness campaigns and the embodiment of class and class differences in health care seeking and cancer symptom experience (Merrild, Offersen, this volume), the introduction of the ­human papillomavirus (HPV) vaccine (Nielsen, this volume), the role of the media in framing collective cancer imaginaries and diagnostic anticipations (Tørring,

Introduction 13

this volume), the time work and material cultures of fast-­track diagnostic pathways (Aarhus, this volume), and surveillance for lung cancer diagnostics (Frumer, this volume), as well as the minutiae of patient-­doctor encounters regarding cancer suspicions (Kristensen, Andersen, this volume), this volume pays careful attention to the dif­fer­ent sociopo­liti­cal interventions and the circumstances through which accelerated cancer diagnostics came into being in the context of the Danish welfare society.

What Is to Come I have described how the early diagnosis paradigm was configured in interactions between epidemiological knowledge production, po­liti­cal activation, and media attention. But calls for the early diagnosis of cancer would (clearly) not have been pos­si­ble without advancements of biotechnologies such as visualization technologies, vaccines, and blood-­testing technologies (cf. Gibbon 2013; Manderson 2015; Pérez, Gibbon, and Lanceley 2022). As described extensively by Foucault (1963), modern medicine emerged out of the conjuncture of pathological anatomy with its internal geography of the body and the modern clinic as a space where emergent technologies privileged vision as a basis for truth. As testified by many anthropologists and sociologists (Keating and Cambrosio 2014; Rabinow and Rose 2006), the medical sciences have drastically expanded our reach into the body as well as our mastery of the body. This is also evident within the comprehensive and varied knowledge field of cancer. As argued convincingly by a number of anthropologists, cancer control is now a research and practice field habituated by biologists, doctors, patient advocates, social scientists, radiographers, data scientists, pharmacologists, chemists and epidemiologists, and it is highly entangled with the vectors and desires of capitalism (Bogicevic et al. 2021; Greco 2021; Jain 2013; Keating and Cambrosio 2014). However, despite the increasingly complex nature of this field of knowledge, when transformed into an issue of public health cancer control is often reduced to a ­simple prob­lem of awareness, begging for s­ imple technological and behavioral solutions. As discussed elsewhere by Offersen, Vedsted, Risør and Andersen (2018, 30–31) and as developed throughout this volume, this is also true of the early diagnosis initiatives implemented in Denmark around the turn of the millennium. In medicine and public health, access to cancer diagnostics and ­peoples’ care-seeking practices for cancer symptoms have primarily been explored through the concept of delay (Andersen and Risør 2014; Arono­w itz 2001). Research has documented the extent to which p­ eople in many parts of the world experience both painful and lengthy strug­gles in accessing diagnostic investigations and treatments (Banerjee 2020; Chou and Zeitzen 2018; Greco 2019; Livingston 2012), but the notion of delay, this volume suggests, creates a simplistic and causal link between symptom recognition and diagnostic intervention. This

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figure I.2. Billboard promoting the early diagnosis campaign in which a son praises his

f­ ather’s love and social engagements and encourage him to pay attention to “the seven signs of cancer” “­because I cannot live without you.” The text is phrased as a greeting card for ­Father’s Day, and it starts, “Dear ­father, I have something impor­tant to tell you. Thank you for being my f­ ather. Thank you for all the ­things that you have done for me, and still do. You shared with me your love for ­music, you always greet me with a smile on your face. I do not say this often enough; but I love you, and I could not wish for a better f­ ather. . . . ​But do you also remember to take care of yourself? Please, pay attention to the seven signs of cancer, ­because I cannot live without you.” (Source: RBLM Creative Agency—­DK)

link is not only based on under­lying assumptions of a decontextualized rationality (Andersen and Risør 2014) but also creates illusory certainties about the embodied and infrastructural materiality of cancer diagnostics. Campaigns urging ­people not to delay and adherence to symptom-­based clinical guidelines or vaccine programs are generally presented as straightforward ways of engaging with the world, creating an unintended illusion of certainty that does not correspond with everyday embodied forms of uncertainty and ambiguity relating to the presence of a potential cancer. This is also exemplified in figure I.2, where the rhe­torics of sentimentality coincide with the war on cancer, illustrating how campaigns hide the uncertainties and complexities related to accelerated cancer diagnostics while making personal and intersubjective cancer anticipations and responsibility the primary discourse for discussing and controlling the disease. Acceleration and expansion are thus the helix double (Jain 2013) of con­temporary cancer control; and in many ways cancer provides us with an exemplary case of modernity, characterized by escalation and deep faith in pro­gress (Rosa 2020, 8). Among health promoters in Denmark, cancer survival rates have become figures of international competition and pro­gress—­demystified, rationalized, and accepted as a means of constructing a healthy and robust welfare society. But as w ­ ill become

Introduction 15

evident throughout this volume, when transformed into the minutiae of everyday social practice, it is far from easy to control cancer through early diagnosis interventions. In addition to asking, “Why do ­people delay when seeking health care?” or “How can health care systems speed up cancer diagnostics?” we encourage questions such as “What happens when the ­future is experienced as a pro­cess leading to an irreversible cancerous death?” and “When do acts of securing a cancer ­free ­future start dominating the pre­sent?” Through a temporal reframing of cancer control through the concept of anticipation, this volume in par­tic­ul­ ar raises two discussions: expansion and acceleration.

Expansion As w ­ ill be discussed in this volume by Sara Marie Hebsgaard Offersen, Stine Hauberg Nielsen, myself, and Benedikte Møller Kristensen, the focus on early diagnosis has expanded the spatial, bodily, and temporal scope of cancer control, thereby forging new links between the public and what we may broadly regard as the health care system (Kleinman 1980). The early diagnosis paradigm is centered on health policies that drive an increased emphasis on vaccination compliance, symptom awareness, health care seeking practices, and the management of time. This has changed the scope of cancer control from being dominated by highly technical, disease-­centered, hospital-­based interventions intended to save or prolong life through risk discourses to a focus on governing ­people (potential patients as well as health care professionals), and everyday forms of embodied attention through “do not delay” discourses. With expansion come new areas of ambiguity and uncertainty. Instead of being potential carriers of diseases, the public becomes participants in controlling and diagnosing cancer as early as pos­si­ble. This volume shows how an expanding cancer control engages with or comes to exist in parallel with more mundane everyday realities fostering cancer anticipations. Drawing on long-­term fieldwork in a suburban and a rural community in Jutland, Denmark, in chapter 2 Offersen describes the existence of dif­fer­ent and paradoxical forms of cancer anticipations and shows how they are entangled with the ways her interlocutors understand and practice middle-­classness. Danish notions of middle-­classness offer par­tic­u­lar routes to how bodies and cancer risks and symptoms are attended to. Cancer anticipation is deeply rooted and ­shaped in pre­sent ways of life and ongoing existential concerns, Offersen concludes. In a similar vein, in chapter 3 Merrild explores the situatedness of bodily experiences and sensations. She has conducted fieldwork among some of the poorest ­people with socially complex prob­lems in Denmark. Through the pre­sen­ta­tion of rich ethnographic details and theoretical conversations with Marianne Gullestad’s writings on sameness, she points out how cancer anticipations are conditioned by the embodiment of p­ eople’s social situation. Merrild argues that the standardized approaches to and common ideas of sameness that dominate public health cancer

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research and interventions may overlook essential, biosocial differences between ­people from dif­fer­ent segments of Danish society. In chapter 8, Nielsen takes on the job of mapping and exploring the HPV vaccine side-­effect controversy that erupted in Denmark a­ fter the launch of this vaccine program in 2009. She describes how a group of young ­women captured the attention of the Danish public in 2013–2015 when they reported experiences of widespread pain, headaches, dizziness, fainting, fatigue, and cognitive dysfunctions soon a­ fter their HPV vaccinations. The response by the Danish state authorities was somewhat ambiguous: they both confirmed the safety of the HPV vaccine and opened regional HPV clinics to care for the individuals reporting adverse reactions. The state authorities also initiated a public discourse on the HPV vaccine that did not allow any doubt or disbelief in a vaccine program that carries with it a promise to eradicate cancer. This, as Nielsen shows, produced doubts, silences, and uncertainties among the young w ­ omen who w ­ ere suffering from alleged side effects. In chapter 5, Kristensen attends to the details and subtleties of intersubjective engagements between patients and general prac­ti­tion­ers (GPs). She shows how the focus on early cancer diagnostics has altered the ways in which cancer is anticipated in GP clinics. Doctors resonate with and attune their intuitions as they strug­gle to identify ­those (rare) patients who may pre­sent the early or vague signs of an under­lying cancer. Kristensen suggests that a policy of early diagnosis has summoned cancer in a ghostly form (Derrida 1994), namely as an absent presence, which is treated as an unlikely yet latent and disturbing potentiality. In engaging with public health perspectives on health care seeking, awareness, in­equality, and vaccine control, Merrild, Kristensen, Nielsen, and Offersen thus all raise impor­tant questions about what is implied by the assumption that cancer control may be located in individual be­hav­ior and choice, which engenders a culture of blame or uncertainty vis-­à-­vis anyone who is perceived as exercising poor lifestyle or care-­seeking choices. Also, in exploring how cancer control comes into existence in more mundane everyday realities, they testify to the social complexities and ambiguities that arise when p­ eople are encouraged to anticipate cancer, and when the spatial, bodily, and temporal scope of cancer control has expanded.

Acceleration One of the defining qualities of con­temporary cancer control is an imperative to accelerate the material and social modes of diagnostic inquiry, or “a practical and material acting-­in-­advance” (Stephan and Flaherty 2019, 2). Through the narrative establishment of cancerous growth as something that speeds up with time, the management of time has become a proxy for con­temporary attempts to control a biological phenomenon that is, in fact, still very much a conundrum. Statements, suspicions, or vaguely verbalized qualms such as “what if a cancer is hiding in silence within the body?” are notable in nearly all the ethnographies presented,

Introduction 17

reflecting how, as I show in this volume, attempts to tame time have infused a sense of “looming time limits that generate urgency about acting now to protect the ­future” (Adams, Murphy, and Clarke 2009, 248). Tørring introduces this line of thinking in the first chapter. Based on detailed analy­sis of the press coverage of cancer and waiting times as well as on autoethnographic experiences of working as a cancer epidemiologist, she explores the biotechnological, po­liti­cal, and cultural entanglements that allowed a temporal reframing of cancer in Denmark as an acute condition. She points to three forms of repre­sen­ta­ tion flourishing in the Danish press from 1995 to 2007 that added to the shift in cancer anticipations. Tørring argues that the proliferation of cancer narratives, cancer waiting time mea­sures, and cancer survival rates enabled newspapers to si­mul­ta­ neously cultivate public vigilance with regard to cancer and negative feelings ­toward the nation by conjuring up imaginings of the cancer-­struck body and the cancer-­ struck country. Acute cancer in Denmark thus emerged as a po­liti­cal agenda at several levels si­mul­ta­neously, mediated by an increasingly attentive press, which opened a backdoor to a series of po­liti­cal reforms by turning time and cancer into a moral and potentially fatal prob­lem of the Danish welfare state. In chapter 3, based on long-­term fieldwork in general practice clinics, I explore the dual logic of expansion and acceleration that came to govern the medical knowledge production of “alarm symptoms of cancer” and the “do not delay” paradigm in Denmark. Cursorily referencing Foucault’s prediction in The Birth of the Clinic (1963) of a receding medicine of symptoms, I suggest that symptoms are increasingly impor­tant to con­temporary biomedicine. Demands for better survival through early diagnosis make it necessary to predict the growth of tumors at an increasingly early stage. Such demands for and abilities to intervene against early stages of diseases have, I argue, introduced embodied ways of orientation where it is increasingly difficult for ­people to trust their body-­selves, producing clinical situations where it is difficult to achieve diagnostic closure. Based on long-­term fieldwork on the particulars of accelerated cancer patient pathways, in chapter 6 Aarhus makes vis­i­ble the huge amounts of time required by health care professionals and patients to make cancer patient pathways work. The work performed, she shows, aims to achieve a par­tic­u­lar f­uture that is hopefully cancer ­free. Through Aarhus’s work and her use of Michael Flaherty’s concept of time work, we learn how pathways become vigilant devices used by patients and health care professionals to take authorized action when facing the uncertainties and unknownness of individual cancers. Fi­nally, in her work on surveillance for lung cancer, in chapter 7 Frumer focuses on the intimate and expanding relation of continuous medical testing between the Danish welfare state and its citizens to the social and historical manifestation of “attending to tissue changes.” Frumer describes how ­people who are subject to surveillance live in a contracted presence, where the diagnostic infrastructure of surveillance cultivates and thrives on uncertainty and certainty as mutually constitutive modes of experience. The openness of interpretation and fear of the

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consequences move ­people, both affectively and concretely, into continuous CT surveillance. At the same time, the message for p­ eople in surveillance is that cancer is controllable by acting in due time. Tørring, Andersen, Frumer, and Aarhus thus describe the multilayered, temporally oriented, and complex forms of anticipation that accompany accelerated diagnostics. This should, this volume suggests, make us think more carefully about what we mean when we write about cancer control, and how cancer control mediates h­ uman life and modes of experience. Or, as persuasively stated by Manderson in the afterword to this volume, This is not a book about one kind of cancer, nor even a cluster of related cancers. But for any cancer, diagnosis yields power in its ability to map out ­futures, even when symptoms conflict or fluctuate, w ­ hether or not the diagnostic label is accurate at all or for any par­tic­ul­ ar person.

notes 1. ​Heinsen and colleagues (2020) talk about a preventive health care complex, which for the

sake of the argument I refer to as a predictive health care complex ­because I believe this to be a more precise conceptualization of con­temporary cancer control initiatives. Cancer cannot be controlled or prevented, but early cancerous states can be predicted. 2. ​For several de­cades, anthropologists have been producing rich evidence on the burden of living with cancer and the complexity it places on families, professionals, and their relationships with patients. This is a rich lit­er­a­ture that covers a range of subthemes, from gender studies and cancer advocacy (Lorde [1988] 2017) to engagements with biomedical disease imaginaries (Good et al. 1990), rehabilitation (Hansen and Tjørnhøj-­Thomsen 2008), complementary medicine (Nissen et al. 2014), and the cultural and po­liti­cal meaning and significance of cancer (Stoller 2004; Jain 2013; Mathews and Burke 2015). ­There is no room ­here for a thorough repre­sen­ta­tion of this lit­er­a­ ture, but see the introduction in Mathews and Burke (2015) for a recent review. 3. ​Personal conversation with the director of the Danish Health Authority. 4. ​When the COVID-19 pandemic erupted in 2020, Denmark was among the first countries to introduce lockdown mea­sures which also included restricted access to the health care system. The costs of administering this lockdown and implementing offensive test strategies and vaccination programs naturally have exceeded the spending on cancer control. The ways that the central government handled the pandemic testified, however, to the moral and po­liti­cal significance of cancer. During the first phases of the lockdown, Danish hospitals canceled all so-­called benign elective operations, but cancer diagnostics and care continued to be provided.

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—­—­—. 2021. “The Uncertain Presence: Experiences of Living with Metastatic Breast Cancer.” Medical Anthropology 41 (2): 129–140. https://­doi​.­org​/­10​.­1080​/­01459740​.­2021​.­1941003. Hansen, Helle Ploug, and Tine Tjørnhøj-­Thomsen. 2008. “Cancer Rehabilitation in Denmark: The Growth of a New Narrative.” Medical Anthropology Quarterly 22 (4): 360–380. https://­ doi​.­org​/­10​.1­ 111​/­j​.1­ 548​-­1387​.­2008​.­00035​.­x. Harris, Fiona. 2015. “­Dying to Be Heard: Cancer, ­Imagined Experience and the Moral Geographies of Care in the UK.” In Anthropologies of Cancer in Transnational Worlds, edited by Holly F. Matthews, Nancy J. Burke, and Erini Kampriani, 229–240. London: Routledge. Heinsen, Laura Louise, Ayo Wahlberg, and Helle Vendel Petersen. 2021. “Surveillance Life and the Shaping of ‘Genet­ically at Risk’ Chronicities in Denmark.” Anthropology and Medicine 29 (1): 29–44. https://­doi​.­org​/­10​.­1080​/­13648470​.­2021​.­1893654. Jain, Lochlann. 2013. Malignant: How Cancer Becomes Us. Oakland: University of California Press. Keating, Peter, and Alberto Cambrosio. 2014. Cancer on Trial: Oncology as a New Style of Practice. Chicago: University of Chicago Press. Kjærbye-­Thygesen, Anette, Lene Drasbek Huusom, Kirsten Frederiksen, and Susanne Krüger Kjær. 2005. “Trends in the Incidence and Mortality of Ovarian Cancer in Denmark 1978–2002: Comparison with Other Nordic Countries.” Acta Obstetricia et Gynecologica Scandinavica 84: 1006–1012. https://­doi​.­org​/­10​.­1111​/­j​.­0001​-­6349​.2­ 005​.­00878​.­x. Kleinman, Arthur. 1980. Patients and Healers in the Context of Culture: An Exploration of the Borderland between Anthropology, Medicine, and Psychiatry. Berkeley: University of California Press. Koch, Lene, and Mette Nordahl Svendsen. 2005. “Providing Solutions-­Defining Prob­lems: The Imperative of Disease Prevention in Ge­ne­tic Counselling.” Social Science and Medicine 60 (4): 823–832. https://­doi​.­org​/­10​.­1016​/­j​.­socscimed​.­2004​.0­ 6​.­019. Lakoff, Andrew. 2017. “Two Regimes of Global Health.” In Unprepared: Global Health in a Time of Emergency, 67–94. Oakland: University of California Press. Lannin, Donald R., Holly F. Mathews, Jim Mitchell, and Melvin S. Swanson. 2002. “Impacting Cultural Attitudes in African-­American ­Women to Decrease Breast Cancer Mortality.” American Journal of Surgery 184 (5): 418–423. https://­doi​.o­ rg​/­10​.­1016​/­S0002​-­9610(02)01009​-­7. Livingston, Julie. 2012. Improvising Medicine: An African Oncology Ward in an Emerging Cancer Epidemic. Durham, NC: Duke University Press. Lock, Margaret. 1998. “Breast Cancer: Reading the Omens.” Anthropology ­Today 14 (4): 7–16. https://­doi​.­org​/­10​.2­ 307​/­2783351. Lorde, Audre. (1988) 2017. “A Burst of Light.” In A Burst of Light and Other Essays, 40–135. Reprint. Mineola, NY: Dover/Ixia Press. Löwy, Ilana. 2007. “Breast Cancer and the ‘Materiality of Risk’: The Rise of Morphological Prediction.” Bulletin of the History of Medicine 81 (1): 241–266. https://­doi​.­org​/­10​.­1353​/­bhm​ .­2007​.­0007. —­—­—. 2010. Preventive Strikes: ­Women, Precancer, and Prophylactic Surgery. Baltimore: Johns Hopkins University Press. Mæhle, Per Magnus, Senada Hajdarevic, Erna Håland, Rikke Aarhus, Sigbjørn Smeland, and Bjørn Erik Mørk. 2021. “Exploring the Triggering Pro­cess of a Cancer Care Reform in Three Scandinavian Countries.” International Journal of Health Planning and Management 36 (6): 2231–2247. https://­doi​.­org​/­10​.­1002​/­hpm​.­3278. Manderson, Lenore. 2015. “Afterword: Cancer Enigmas and Agendas.” In Anthropologies of Cancer in Transnational Worlds, edited by Holly F. Mathews, Nancy J. Burke, and Eirini Kampriani, 241–254. New York: Routledge. Manderson, Lenore, and Carolyn Smith-­Morris, eds. 2010. Chronic Conditions, Fluid States: Chronicity and the Anthropology of Illness. New Brunswick, NJ: Rutgers University Press.

Introduction 21 Mathews, Holly F., and Nancy J. Burke. 2015. “Introduction: Mapping the Landscape of Transnational Cancer Ethnography.” In Anthropologies of Cancer in Transnational Worlds, edited by Holly F. Matthews, Nancy J. Burke, and Erini Kampriani, 1–34. London: Routledge. McMullin, Juliet Marie, and Diane E. Weiner, eds. 2008. Confronting Cancer: Meta­phors, Advocacy, and Anthropology. Santa Fe, NM: School for Advanced Research Press. Merrild, Camilla Hoffmann, Peter Vedsted, and Rikke Sand Andersen. 2017. “Noisy Lives, Noisy Bodies: Exploring the Sensorial Embodiment of Class.” Anthropology in Action 24 (1): 13–19. https://­doi​.­org​/­10​.­3167​/­aia​.­2017​.­240103. Nelson, Nicole C., Peter Keating, and Alberto Cambrosio. 2013. “On Being ‘Actionable’: Clinical Sequencing and the Emerging Contours of a Regime of Genomic Medicine in Oncology.” New Ge­ne­tics and Society 32 (4): 405–428. https://­doi​.­org​/­10​.­1080​/­14636778​.2­ 013​.­852010. Nielsen, Stine Hauberg, Rikke Sand Andersen, and Marie Louise Tørring. 2020. “A Shot at a Healthy ­Future.” Tidsskrift for Forskning i Sygdom og Samfund 17 (33): Article 123588. https://­ doi​.­org​/­10​.­7146​/­tfss​.v­ 17i33​.­123588. Nissen, Nina, Anita Lunde, Christina G. Pedersen, and Helle Johannessen. 2014. “The Use of Complementary and Alternative Medicine ­after the Completion of Hospital Treatment for Colorectal Cancer: Findings from a Questionnaire Study in Denmark.” BMC Complementary and Alternative Medicine 14: Article 388. https://­doi​.o­ rg​/­10​.­1186​/­1472​-­6882​-­14​-­388. Offersen, Sara Marie Hebsgaard, Mette Bech Risør, Peter Vedsted, and Rikke Sand Andersen. 2016. “Am I Fine? Exploring Everyday Life Ambiguities and Potentialities of Embodied Sensations in a Danish Middle-­Class Community.” Medicine Anthropology Theory 3 (3): Article 4705. https://­doi​.­org​/­10​.­17157​/­mat​.­3​.3­ ​.­392. —­—­—. 2018. “Cancer-­before-­Cancer. Mythologies of Cancer in Everyday Life.” Medicine Anthropology Theory 5 (5): Article 4900. https://­doi​.­org​/­10​.­17157​/­mat​.5­ ​.­5​.5­ 40. Offersen, Sara Marie Hebsgaard, Peter Vedsted, and Rikke Sand Andersen. 2017. “ ‘The Good Citizen’: Balancing Moral Possibilities in Everyday Life between Sensation, Symptom and Healthcare Seeking.” Anthropology in Action 24 (1): 6–12. https://­doi​.­org​/­10​.3­ 167​/­aia​.­2017​ .­240102. Pérez, Ignacia Arteaga. 2021. “Learning to See Cancer in Early Detection Research.” Medicine Anthropology Theory 8 (2): 1–25. https://­doi​.o­ rg​/­10​.­17157​/­mat​.8­ .​ ­2​.­5108. Pérez, Ignacia Arteaga, Sahra Gibbon, and Anne Lanceley. 2022. “Therapeutic Values in Cancer Care.” Medical Anthropology 41 (2): 121–128. https://­doi​.­org​/­10​.­1080​/­01459740​ .­2021​.­2021902. Rabinow, Paul, and Nikolas Rose. 2006. “Biopower T ­ oday.” BioSocieties 1: 195–217. https://­doi​ .­org​/­10​.­1017​/­S1745855206040014. Rosa, Hartmut. 2020. Hartmut Rosa, Resonance: A Sociology of Our Relationship to the World. 2nd ed. Cambridge: Polity Press. https://­doi​.­org​/­10​.1­ 177​/­0791603519893774. Rubin, Greg, Annette Berendsen, S.  Michael Crawford, Rachel Dommett, Craig Earle, Jon Emery, Tom Fahey, et al. 2015. “The Expanding Role of Primary Care in Cancer Control.” Lancet Oncology 16 (12): 1231–1272. https://­doi​.­org​/­10​.1­ 016​/­S1470​-­2045(15)00205​-­3. Sargent, Carolyn, and Peter Benson. 2019. “Cancer and Precarity: Rights and Vulnerabilities of West African Immigrants in France.” In Negotiating Structural Vulnerability in Cancer Control, edited by Julie Armin, Nancy J. Burke, and Laura Eichelberger, 21–46. Albuquerque: University of New Mexico Press. Schoenfeld, Naomi, C. 2022. “Vivir en Cronicidad: Terminal Living through Cuban Cancer Vaccines.” Medical Anthropology 41 (2): 141–155. https://­doi​.­org​/­10​.­1080​/­01459740​.­2021​.­1891053. Sidenius, Anne, Helle Ploug Hansen, Ole Mogensen, Martin Rudnicki, and Tine Tjørnhøj-­ Thomsen. 2020. “Temporality and Timework: Danish Endometrial Cancer Patients’ Experiences of an Accelerated Cancer Patient Pathway.” Time and Society 29 (3): 866–891. https://­doi​.­org​/­10​.­1177​/­0961463X20912848.

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Sidenius, Anne, Lenore Manderson, Ole Mogensen, Martin Rudnicki, Lars Mikael Alling Møller, and Helle Ploug Hansen. 2019. “ ‘But This Is a Good Cancer:’ Patient Perceptions of Endometrial Cancer in Denmark.” Journal of Clinical Nursing 28 (1–2): 245–256. https://­doi​ .­org​/­10​.­1111​/­jocn​.­14615. Stephan, Christopher, and Devin Flaherty. 2019. “Introduction. Experiencing Anticipation: Anthropological Perspectives.” Cambridge Journal of Anthropology 37 (1): 1–16. https://­doi​ .­org​/­10​.­3167​/­cja​.­2019​.­370102. Stolberg, Michael. 2014. “Meta­phors and Images of Cancer in Early Modern Eu­rope.” Bulletin of the History of Medicine 88 (1): 48–74. https://­doi​.­org​/­10​.­1353​/­bhm​.2­ 014​.­0014. Stoller, Paul. 2004. Stranger in the Village of the Sick: A Memoir of Cancer, Sorcery, and Healing. Boston: Beacon Press. Storm, H. H., P. W. Dickman, A. Engeland, T. Haldorsen, and T. Hakulinen. 1999. “Do Morphology and Stage Explain the Inferior Lung Cancer Survival in Denmark?” Eu­ro­pean Respiratory Journal 13 (2): 430–435. https://­doi​.­org​/­10​.1­ 183​/­09031936​.­99​.1­ 3243099. Svendsen, Mette Nordahl. 2006. “The Social Life of Ge­ne­tic Knowledge: A Case-­Study of Choices and Dilemmas in Cancer Ge­ne­tic Counselling in Denmark.” Medical Anthropology 25 (2): 139–170. https://­doi​.­org​/­10​.­1080​/­01459740600667120. Toon, Elizabeth. 2008. “ ‘Cancer as the General Population Knows It’: Knowledge, Fear, and Lay Education in 1950s Britain.” In Cancer in the Twentieth ­Century, edited by David Cantor, 116–138. Baltimore: Johns Hopkins University Press. Tørring, Marie Louise. 2014. “Hvorfor Akut Kræft? Et Bud På en Epidemisk Forstå­else af Tid og Kræft-­Tendenser i Danmark.” Tidsskrift for Forskning i Sygdom og Samfund 11(20): Article 17222. https://­doi​.­org​/­10​.­7146​/­tfss​.­v11i20​.­17222. —­—­—. 2017. “Cancer and the Limits of Longevity.” BMJ 357: Article j2920. https://­doi​.­org​/­10​ .­1136​/­bmj​.j­ 2920. Wailoo, Keith. 2010. Three Shots at Prevention: The HPV Vaccine and the Politics of Medicine’s ­Simple Solutions. Baltimore: Johns Hopkins University Press.

1 • THE WAITING TIME PAR ADOX Intensifying Public Discourses on the Vital Character of Cancer Waiting Times M A R I E LO U I S E TØ R R I N G

Introduction: Waiting with Cancer in the Body In the summer of 2007, a leading story appeared in the Sunday Politiken newspaper describing the encounter a Danish cancer patient, Henrik Nebelong, had with the publicly funded health care system. “He Is Waiting with Cancer in His Body,” it said on the front page. Inside the paper, a photo presented Henrik staring straight into the camera with shining blue eyes and a firm expression on his face. “Dammit, ­They’re Not Gonna Get Me. At Least Not Yet,” the headline read (Schmidt 2007a, 3). Henrik was fifty-­nine years old at the time of the interview and had lung cancer and brain metastases. Recently scheduled for chemotherapy, Henrik’s illness story began three months ­earlier on the day his wife noticed him walking with a limp. The c­ ouple explained how they dreaded the treatment, having “heard and read so much about the long waiting times.” When they reflected on the past months, they described a feeling of being trapped inside the health care system, saying that it was like “a maze with no entrance, center or exit, where you just go round and around . . . ​like a forecourt of hell.” Henrik recounted his initial state of shock and how, thanks to his wife, he ended up telling his story “in the hope that it might help other ­people.” He was angry, but the object of his anger and accusations was not the doctors and nurses, nor the local hospital: “It’s not us against the hospital in Næstved. It’s us against a health care system. . . . ​It’s the po­liti­cal system I’m angry with,” he explained. He called on politicians to do something. This chapter explores how public discourse about the vital character of cancer waiting times has changed and how time came to ­matter in cancer control. The controversy over “delays” (as cancer waiting times are often referred to in public 23

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and scientific lit­er­a­ture) had been growing steadily in Denmark since the mid1990s. Henrik’s testimony epitomized the increasingly critical public debate over delays in the Danish health care system, which peaked in a series of large-­scale media campaigns in the mid-2000s. An award-­winning feature on “fatal delays” was published by the broadsheet newspaper Politiken one week before the central government landed a ­grand po­liti­cal agreement entitled “Agreement on Implementation of the Stated Objective of Acute Action and Clear Communication with Cancer Patients” (referred to h­ ere as the “agreement on acute action”) on August 7, 2007 (Danish Government and Danish Regions 2007). The agreement on acute action was negotiated without consideration of existing capacity or resources (Probst, Hussain, and Andersen 2012), and it first proposed the Danish Cancer Patient Pathways, which brought about an unparalleled regulation of the Danish health care system with an explicit moral structure of timely cancer diagnosis and treatment. What stood out in the agreement was its strong focus on what the state could and should do: raise awareness of cancer symptoms and reor­ga­nize health ser­v ices to ensure attentive and expedient cancer ser­vices. As described by Andersen in the introduction to this volume and as attested by the ethnographies of this volume, that regime remains more or less unchallenged t­oday. Delays, however, ­were not always considered a prob­lem in demand of acute action. Although cancer waiting times had long been a ­matter of moral concern, u­ ntil the mid-2000s they w ­ ere neither scientifically nor po­liti­cally constructed as a real danger to the Danish public. In 2007 I was encouraged to take on a doctoral proj­ect aimed at analyzing the negative impact of cancer waiting times on mortality in cancer patients. The proj­ ect was a direct offspring of key discussions at the time, and as such it offered me a potential starting point for reflecting on the interplay between epidemiological knowledge and biopolitics. During t­ hese studies, I encountered what cancer epidemiologists term “the waiting time paradox”: the frequent observation across a wide range of cancers that cancer patients with long delays have lower mortality rates compared with ­others (Neal et al. 2015). Such findings are paradoxical ­because they contradict our common sense. On the basis of methodological discussion and empirical testing, I challenged the premises and reasoning of previous studies (see Tørring et al. 2017, 2019) and concluded in my dissertation that ­these studies are generally marked by a nonclosure of the longevity effect of waiting with cancer in the body (Tørring 2011). In this chapter, I continue working with the concept of the waiting time paradox to highlight two forms of “nonknowledge” pre­sent in the public discourses on delay. Parallel to Christopher Daase and Oliver Kessler’s analy­sis of how uncertainty was perceived and danger constructed in the global “war on terror” in the 2000s (2007, 412–413), I emphasize how clinical epidemiological studies produce “unknowns”—­ that is, uncertainties about the dangers of delaying that w ­ ere initially tamed and managed as calculable risks and ­later ­were used as a wild card to promote vigilant planning.



The Waiting Time Paradox 25

The material and analyses presented in this chapter rely on my experience as an epidemiologist working within the field of cancer diagnosis research, and they condense my postdoctoral research on the dialectics of cancer discourses and international cancer survival statistics (Tørring 2014, 2015, 2017).1 To capture the specificities and dynamics of the historical framing of cancer waiting times, I draw on a comprehensive content analy­sis of Danish newspaper coverage from 1987 to 2017 and on empirical material from interviews and conversations with journalists and key stakeholders who took active part in the Danish controversy over delays in the mid-2000s (see Tørring and Stentoft 2021). The chapter is or­ga­nized into three parts, each presenting a distinctive phase of the ongoing public debates. First, I introduce the public policy agenda on hospital waiting times as a general phenomenon in cancer control and outline its Danish trajectory. Second, for the sake of clarity and detail I have selected a handful of invigorating and revealing stories epitomizing how the Danish public—­through newspapers—­learned about the importance of waiting time in relation to cancer control. Drawing on constructivist approaches to narrative (Bruner 1987; Frank 1994, 1995), ­these sections emphasize how ­human interest stories told in the 1990s about the experience of waiting with cancer in the body diverged noticeably from stories told from 2006 onward. Thinking also within the conceptual framework of biopower (Foucault 2004; Lakoff 2015; Rabinow and Rose 2006), I contextualize the stories with historical details about science and politics, and I reflect on the shifting terrains of cancer control. In the final discussion, I return to the notion of the waiting time paradox and suggest it as an analytical lens to further our understanding of how the very scientific and po­liti­cal construction of “delay” produced its own distinctive shifts and affected its lived experiences in Denmark.

The Emerging Policy Agenda on Hospital Waiting Times In countries with long-­standing, publicly financed health ser­vices, long hospital waiting times have been considered one of the most serious quality prob­lems on the health policy agenda since the late 1980s (Hanning 1996). Hospital waiting times are connected to ways in which tax-­funded health care ser­vices are regulated when ­free at the point of need (Larsen and Stone 2015). Prob­lems of hospital waiting times grew in welfare states with the expansion of medical technology and treatments, and with the increasing rates of age-­related diseases (Bray et al. 2012; Olsen et al. 2013). In general, the problematization of waiting times works on the basis of what can reasonably be termed “acute” or “urgent,” apart from medical emergencies like traumas and accidents. The agendas unfold as concrete debates on the importance of time in relation to survival, and they tend to evolve around fields of medical interventions for potentially progressive conditions such as cancer, which require extensive monitoring and coordination within and between health care sectors

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Number of news articles in national newspapers 300

Agreement on acute action

250 200 1st National Cancer Plan

150 1st National Heart Plan

100

“cancer” and “waiting time”

2016

2014

2012

2010

2008

2006

2004

2002

2000

1998

1996

1994

1992

1990

0

1988

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“heart disease” and “waiting time”

figure 1.1. The public policy agenda on hospital waiting times as it unfolded in the

Danish press from 1987 to 2017. The graphs depict the number newspaper articles over time touching explic­itly on the issue of waiting time in relation to cancer (solid line) and heart disease (dashed line), respectively. We used the Danish Media Archive InfoMedia (an online provider of Danish print media) to identify a total of 4,230 eligible news articles, editorials, and letters to the editor from the seven national broadsheet newspapers Berlingske Tidende, Børsen, Information, Jyllands-­Posten, Kristeligt Dagblad, Politiken, and Weekendavisen as well as two tabloids B.T. and Ekstra Bladet. (Source: Tørring and Stentoft 2021)

and physician specialties. In relation to cancer control, the construction of delay as a po­liti­cal prob­lem rests on how uncertainty is perceived and how we determine the magnitude of danger that cancer patients face when they are exposed to unnecessary waits or wasted time before diagnosis and treatment. In Denmark, the public policy agenda on hospital waiting times emerged in the late 1980s, first as a public debate on heart treatment capacity and ­later as a public debate on cancer control. Figure 1.1 shows the trajectory of the Danish agenda by displaying frequencies over time of national newspaper articles touching explic­itly on the issue of waiting times in relation to heart diseases and cancer. The national press coverage of the debates surged three times from 1987 to 2017 with a first media wave coinciding with the first National Heart Plan (“Hjerteplanen”) in 1993, a second media wave overlapping with the gradual implementation of the first National Cancer Plan (“Kræftplanen”) of 2000, and then a media tsunami in 2007 when the agreement on acute action was made. In the early 1990s, the Danish public primarily became aware of the prob­lem of hospital waiting times through pervasive h­ uman interest stories about p­ eople



The Waiting Time Paradox 27

d­ ying while waiting for heart treatment and surgery (Ekstra Bladet Staff 1990). This prob­lem was typically referred to as “the waiting list,” and politicians ­were often accused of failing to reduce the delays caused by this list. Po­liti­cal scientists Lars Thorup Larsen and Deborah Stone describe how the waiting list conjured up an image of ­people standing in line and thus functioned as a power­ful po­liti­cal symbol evoking “all the deprivations of Eastern Eu­ro­pean socialism” (Larsen and Stone 2015, 948–950). As early as 1991, a professor of cardiology described waiting lists as “lethal” and called for more cooperation between private and public actors to stop the delays (Politiken Staff 1991a). The Social-­Democratic government (in office 1993–2001) nonetheless preferred solutions within the public sector, including increased competition between public hospitals. A key health policy change in this period was the original “­free choice of hospitals” introduced with the first Danish Heart Plan in 1993, which gave patients an immediate choice among public hospitals beyond their home hospital (Vrangbæk 2004). It was during this period that waiting time was first constructed as something the central administration could mea­sure and use to compare the productivity of public hospitals. Mea­sur­ing and reporting so-­called cancer waits transparently within the health care ser­v ice was, however, not easy. It required extensive information infrastructures and technologies that ­were not in place before the mid-1990s. Despite the growing policy agenda on the issue, surprisingly few news articles dealt with hospital waiting times in relation to cancer in the early 1990s. In fact, the Danish Cancer Society went so far as to declare to the press that delays ­were not a general prob­lem for cancer patients (Politiken Staff 1991b). To explore this nexus further, I now turn to a qualitative content analy­sis of newspaper articles and pre­sent a handful of human-­interest stories exemplifying how delays ­were publicly perceived and interconnected with the scientific and po­liti­cal constructions of cancer waiting times from the 1990s to the 2000s.

Part One: A “New” Cancer, Increasingly Part of Life (1990–1994) “My Long Journey ­Toward a New Life” (Martens 1992) is an uncommonly long, autobiographical feature communicating the experience of waiting for examinations and treatment of cancer. Printed in 1992 by the tabloid newspaper Ekstra Bladet, the feature is presented as an excerpt from a diary written by the paper’s own journalist, Marianne Martens. A cutline introduces her sitting in an isolation room at Copenhagen University Hospital, ready to embark on a bone marrow transplantation procedure and seven days of chemotherapy. Before presenting her chemo experience, Marianne offers the reader “a bit of background” about her life and experience of living with lymphoma for twelve years. She recalls the horror of waiting for cancer treatment and test results, and she describes this passive state as the most vexing part of her cancer journey. She

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abhors waiting, she writes, but she is not complaining, nor is she criticizing or accusing anyone of delaying her tests and treatments. Her story is quite clearly not a campaigning against the health care sector. On the contrary, she seems more on the warpath against the alternative treatments and well-­meaning beliefs flourishing in the popu­lar sector (such as believing that religious faith or eating carrots might cure cancer). Based on her written testimony, Marianne does not appear to believe that the mere passing of time might lower her chances of survival. Reflecting on her experiences, she describes waiting time nonpolemically as a necessary evil. In a confidential tone with her readers, she writes, “We all know that no m ­ atter what’s wrong with you—­unless it’s urgent—­you’ll have to wait, wait and wait.” Marianne’s nonpolemical experience of waiting was common and was echoed by peers in countless articles and popu­lar writings from this period. One of her colleagues, the Danish journalist and novelist Jane Åmund, recounted her own experience of getting cancer in the broadsheet newspaper Berlingske Tidende; she explained that “in the land of cancer t­here is always waiting time. You wait for microscopies, for new test results, for operations” (Åmund 1994). To understand the ­women’s calm anticipation and ac­cep­tance of waiting, we may have to keep in mind that their experiences ­were contingent on new ways of treating cancer. Medical historians, sociologists, and literary theorists have convincingly argued that the rise in published cancer narratives during this very period was tied to the advancements of complex and prolonged therapeutic regimes (Frank 1995; Hawkins 1999; Keating and Cambrosio 2014; Pérez, Gibbon, and Lanceley 2022; Pickstone 2012). A successive addition of treatment modalities—­first surgery, then radiotherapy, and then chemotherapy—­had evolved throughout the twentieth ­century (Pickstone 2008). By the 1990s, the increasing complexity and advancement of cancer therapeutics had extended the temporal range of cancer im­mensely and multiplied the number of cancer survivors. As British anthropologist Joanna Baines has explained, a cancer diagnosis for this generation was no longer a death sentence, nor was it an obstacle that could be overcome by simply cutting out the tumor and consigning it to the past (Baines 2012). Marianne’s and Jane’s so-­called journeys epitomize the experience of what Baines terms a new form of cancer illness, involving active treatment for up to a year followed by medi­cation and extensive checkups for as long as one can imagine. Baines poignantly argues, with reference to Arthur Frank’s reflections on the flourishing type of quest narratives in remission society, “Given this ‘new’ cancer, increasingly a part of life, and of personhood, it is hardly surprising that the need for the experience to constitute a positive contribution to life is also greater than ever” (Baines 2012, 29). Instead of producing fears of d­ ying, the time-­consuming cancer examinations and treatments in the early 1990s allowed p­ eople like Marianne and her peers to experience waiting time as a necessary evil in a meaningful quest for life.



The Waiting Time Paradox 29

Part Two: Contested Risks of Cancer Waiting Times (1995–2005) In 1995, a breast cancer patient, Myrna Tofte, lodged a complaint about her local hospital in Esbjerg. The center-­right broadsheet newspaper Berlingske Tidende covered her case exclusively and ran five investigative news stories over the course of three days. In the first article, published on October 12, 1995, Myrna stated her case ­under the headline “Waiting for a Cancer Examination Proved Fatal” (Elle 1995b). At the time of the interview, Myrna was fifty-­seven years old and had recently learned that her cancer had spread despite radical mastectomy and six months of chemotherapy. She accused the hospital of initially scheduling her on a routine basis for a breast examination and said that she presented in general practice with suspected symptoms of cancer and was immediately referred to the hospital in July 1994, ­after which she had to wait two months before being examined. Myrna appeared to be utterly demoralized by her experience of the health care ser­vice; intent on proving that her case was a scandal, she claimed that many of the examinations she had had to go through during one year of surgery, radiotherapy, and chemotherapy could easily have been done in a few days instead of weeks. Myrna substantiated her claim by explaining that she had been encouraged for years to self-­examine her breasts and seek medical attention immediately if she ever noticed a lump that could signal cancer. She believed the system was fooling ­women by first campaigning for early detection and then not being prepared to act fast on the results. “It’s like pulling the wool over w ­ omen’s eyes by telling them to report their symptoms as quickly as pos­si­ble, and then putting them on ice when they do,” she said. Unable to console herself with the understanding general practitioner (GP), who described her situation as “unfortunate,” Myrna ended her testimony by saying, “That d­ oesn’t help me.” She scolded, “The hospital wards need to get their act together and learn to coordinate their efforts so you d­ on’t have to wait. It’s a ­matter of life or death.” In the next few days, three news reports followed up on Myrna’s accusations and claims. A front-­page article on October 13, 1995, revealed that Esbjerg Central Hospital (administered by the then County of Ribe) had some of the longest mammography waiting times in Denmark—up to seven weeks compared with a maximum of one week in the best performing counties (Larsen 1995b). The newspaper asked a se­nior physician from the County Hospital of Herlev (presented as one of the best performing oncology wards in the country) to comment on the situation in Esbjerg. He asserted that examinations o­ ught to be performed within at least three weeks in cases of suspected cancer “for the sole purpose of not straining patients’ ­mental health.” Inside the paper, the same doctor also warned against the “false sense of security” (Larsen 1995a) of negative test results (i.e., mammograms with no indication of malignancies) and called on GPs to be much more attentive by frequently following up on patients ­after examination.

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Another news article on the same page investigated the defensive response of the Central Hospital in Esbjerg. Skeptical about the danger of diagnostic delays and unwilling to take responsibility for Myrna’s “mishap,” the local hospital administrator passed the buck and blamed Myrna’s GP, claiming that the possibility of cancer was not communicated well enough upon referral (Elle 1995a). The GP, in turn, refuted this accusation by reading aloud exactly what he wrote: “In my referral on July 21, 1994, I wrote that it was a small nodule, but that t­ here was a small chance it was neoplasma maligno, i.e., breast cancer. In addition, I pointed out that the ­woman had been taking hormone pills for several years, so the possibility of cancer could not be ruled out” (Elle 1995a). This disclosure (which would be illegal u­ nder ­today’s General Data Protection Regulation) had the intended effect. The day ­after the GP’s refutation, the county hospital committee ate h­ umble pie and managed the situation by publicly apologizing on behalf of the hospital (Berthelsen 1995). In the article, the chairman promised to reduce the waiting lists within six months, without denying that delays in the meantime might cost lives. “To err is h­ uman,” he said to the newspaper. Even so, he rejected the idea that hospital delays might have worsened Myrna’s chances of surviving. “One and a half years ago, the situation was even more chaotic,” he explained. “Back then, ­women risked waiting 16 weeks for a mammography” (Berthelsen 1995). ­After all, this statement implied, Myrna had only had to wait two months. The press coverage of Myrna’s case demonstrates how the risks of delay w ­ ere contingent and contested in the late 1990s. From the way in which Myrna states her case, we see how the public was increasingly being exposed to the danger of delay and trained to perceive the uncertainties of cancer as “a m ­ atter of time.” In the 1980s, the Danish Cancer Society had changed its slogan from “Cancer can be cured” (“Kræft kan helbredes”) to “Cancer, if detected early, can be cured” (“Kræft, der opdages i tide, kan helbredes”) to generate more public awareness and more po­liti­cal and philanthropic support for the early detection of cancer ( Jørgensen 2018). An increasingly common news ­angle, pre­sent for the first time in the case of Myrna, reflected a tension between, on the one hand, ongoing early diagnosis campaigns and the “do not delay” messages exhorting Danes to seek medical attention as soon as they notice symptoms that could signal cancer and, on the other hand, professional opinions about the a­ ctual risks of postponing cancer examinations and treatments. In the coverage of the scandal at Esbjerg Central Hospital, we see an example of how experts debated the magnitude of danger or rather the degree of urgency with which hospitals needed to act if they suspected cancer. Doctors and administrators characteristically expressed a certain degree of confidence that delays w ­ ere not necessarily life-­threatening situations. But even if delays ­were not publicly admitted to be m ­ atters of life and death, the scandal also shows how a cancer wait surveillance system was now in place and had become an apt device for revealing institutional mismanagement, making public hospitals accountable for inaction by means of public shaming.



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This pattern of controversy generally characterized media campaigns at the turn of the ­century. In March 1998, the press focused on the prob­lem of bottlenecks in the hospital system with front-­page disclosures of long radiotherapy delays of up to five months at Copenhagen University Hospital (Hagerup 1998); yet despite ­these waits, the risks of delay ­were still contested. In a news article in Berlingske Tidende titled “Waiting a Bit Longer Is Not Very Dangerous” ( Jessen 1998), a cancer specialist urges caution when asked about the danger of delaying radiotherapy. She explains that the common fear among patients that therapeutic delays might cause disease progression was unsupported by medical evidence. Waiting for radiotherapy was “prob­ably not significant” for cancer patients, readers ­were assured. In another feature, a psychologist from the Danish Cancer Society attempted to make a rational case for expediting radiotherapy, claiming, “To be diagnosed with cancer provokes extreme anxiety, b­ ecause ­people are afraid of ­dying and leaving their c­ hildren ­behind. It’s just not good enough” (Staarup 1998). In this pile of expert opinion, a human-­interest story appeared u­ nder the headline “Waiting for Diagnosis and Treatment Wears You Down,” presenting the thirty-­five-­year-­old rectal cancer patient Kornelis van Dijk as “a good example of a person who would benefit from an overall hospital waiting time guarantee” (Kristiansen 1998). Kornelis related his experience of being passed around in a Kafkaesque manner between hospitals for two months and his delayed treatment ­because the doctor was on holiday. Demoralized, he described his encounter with the health care ser­vice as a real m ­ ental letdown, adding that it is “simply not good enough to inflict further prob­lems on patients who are already ­under a lot of ­mental pressure.” The coverage shows how delays in the late 1990s w ­ ere generally perceived as morally unacceptable while uncertainties over the longevity effects of delay remained contested. Delays ­were neither scientifically nor po­liti­cally admitted to be a ­matter of real vital concern. Instead, the growing public demand for urgency was commonly reintegrated into decision-­making pro­cesses as something hospitals ­ought to accommodate by constructing delay as a m ­ ental prob­lem. In December 1995, Weekendavisen, a weekly newspaper specializing in elaborate feature articles on complex societal issues, announced some shocking epidemiological news ­under the headline “Denmark, a Eu­ro­pean Country Suffering from Cancer” (“Danmark, Europas kræftsyge land”) with an explanatory caption proclaiming “Emergency. Danish cancer patients live shorter lives than other Eu­ro­ pean cancer patients, a new large study shows. But whose fault is it? Is it us? Or is it the doctors or politicians?” (Steensgaard 1995). In the article, the investigating journalist Pernille Steensgaard directs ­these questions to the director of the Danish Cancer Registry, Hans Storm, who responds by presenting the main working hypotheses of the Danish epidemiological community. On good authority he suggests that Denmark’s poor cancer survival rates w ­ ere prob­ably linked to the fact that Danish cancer patients w ­ ere being diagnosed at a l­ater stage compared with

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patients in other Eu­ro­pean countries with similar national health expenditures. As highlighted in the subhead, three stakeholders ­were thought to be responsible for causing delays in the detection of cancer: patients, doctors, and/or politicians. Delays may occur, Storm argued, if symptomatic patients hesitate before seeing a doctor, if GPs are too reticent about referring patients to hospitals for further examination, and/or if hospitals lack the capacity (due to, for instance, po­liti­cal priorities) to act promptly and perform the necessary preliminary examinations in a timely sequence. Not surprisingly, the repeated observation of lower survival rates in Denmark (sometimes referred to as the “Danish gap”) became one of the central targets that politicians sought (and still seek) to control. T ­ oday, the systematic and ongoing pursuit of global cancer data and statistics for cancer control action are made publicly available through online tools such as NORDCAN (Cancer Statistics for the Nordic Countries) and GLOBOCAN (Global Cancer Observatory). But back in the late 1990s the reports ­were mostly communicated to the general public through the press. ­Here, the findings multiplied uncertainties by conjuring up imaginings of a cancer-­struck nation. A per­sis­tent public perception emerged that the health care system had been underfunded; the Danish state was frequently shamed in editorials and letters to the editor. The Danish Cancer Society even went so far as to accuse the government of exercising a policy of death and letting cancer patients die in order to save money. A good testament to the harshness of the debate is an article published by the tabloid newspaper Ekstra Bladet in April 1996, titled “Cheapest to Let ­People Die.” In this article, Storm, now representing the Danish Cancer Society’s position, pitches ­these hypotheses in a slightly more conspiratorial manner: It takes too long to get patients from the GP to the hospital. Have the politicians ruined our chances of providing optimal cancer treatment in Denmark? You get what you pay for. The best t­ hing for our hospital finances is that Danes should die young to avoid putting a strain on the system for a lengthy period of time. And if you adopt the bleakest perspective of all, this all looks like a cunning plot hatched by the economists to save money. The more of us that die before reaching retirement age, the cheaper it is for society. (Pedersen 1996)

In this idea of a cunning, cost-­conscious plot, we see the tension between “making live and letting die” that Foucault called “biopower” (Foucault 2004, 247). The statement reveals how the conception of a gap successfully revived ethical commitments to reduce time, forming a prism not just for the imagination of the biography of the nation (Anderson 1999) by guiding po­liti­cal management of national health and vitality but also for international competitiveness (Pedersen 2016; Rabinow and Rose 2006, 205) by turning the “war on cancer” into a “war of nations.” The Danish gap pointed to the need for a comprehensive cancer control plan, and the first was launched in 2000 with a follow-up plan in 2005 (Storm et al. 2010,



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532). Two governments took up the work of bringing Danish cancer treatment up to par with the best-­performing Eu­ro­pean countries by expanding and streamlining cancer care. In the spring of 1998, the center-­left government (in office 1993–2001) set up the first cancer steering committee pledged to solve the prob­lems by implementing cancer wait mea­sures as a governing technology. A key health policy change at the turn of the ­century was to extend the waiting time guarantee and ­free choice among public hospitals to cancer patients (Danish Health Authorities 2000). In the early 2000s, the newly elected liberal-­conservative government (in office 2001–2011) introduced an “extended” ­free choice of hospitals, basically providing a maximum waiting time guarantee to all patients. This legislation said that if any patient’s home hospital could not provide treatment within two months of a referral, the patient could choose to obtain treatment at any other hospital, public or private, ­free of charge. In 2005, an additional Health Act (“Sundhedsloven”) was passed in connection with the major structural reform, which entitled cancer patients to a f­ ree choice of hospital if the waiting time for examinations and treatment in the public sector exceeded four weeks. In theory, the reform was a governing technology that worked owing to the financial threat of losing patients to private hospitals. As Larsen and Stone explain, it was a way for the central government to expand the availability of ser­vices for citizens by using markets against their own regional health authorities (2015, 451), but few patients used the option, ­either ­because they wanted to wait for their local hospital or ­because they ­were unaware of their right to choose (Vrangbæk 2004, 38). Perhaps the most impor­tant policy effect of the four-­week rule was its power to create public outrage when hospitals eventually breached key cancer waiting times.

Part Three: A Galloping Cancer Discourse (2006–2007) On November 11, 2006, Politiken unveiled an emerging scandal l­ater known as the “Herlev Scandal” (Lund 2007) with the feature on Lea Bay Pedersen. The award-­ winning article was written by journalist Hans Drachmann and appeared on the front page of the paper’s Sunday edition with a picture of Lea lying fatigued in a hospital bed with an unspeakably sad look on her face. “Weeks Pass by While the Cancer Spreads. Lea Pedersen Has Waited Far Too Long to Receive Treatment for Her Cancer” the headline reads; the subhead clarifies: “She is not alone, by any means. Hundreds of cancer patients are in the same situation. The hospitals are not living up to the government’s treatment guarantee” (Drachmann 2006b). The feature combines the perspectives of Lea herself and her d­ aughter, Iza Schlaikjer, as well as a clinical man­ag­er and a physician. Lea was fifty at the time and had recently gone through a lengthy series of examinations before an aggressive throat cancer was diagnosed. Her chances

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of surviving one year are no more than 20 ­percent, she had been told. Readers ­were presented with a description of Lea’s mortification on the day she learned from her doctor that she would have to wait for radiotherapy treatment: “And then he told me I ­couldn’t start treatment for the next six weeks. It ­wasn’t exactly what I had expected. I saw it as a death sentence,” she explained. Lea’s physician was interviewed and appeared equally concerned. He informed the reporter of a Danish study indicating that untreated head and neck tumors such as Lea’s may double in size in just two months. The clinical man­ag­er explained that Lea’s case was but one of many. The next day, another front-­page news story in Politiken uncovered even more details about the chaotic conditions at the Regional Hospital of Herlev, its systematic lack of compliance with the government’s waiting time guarantee, and the maladministration of f­ree choice of hospital entitlements by the Danish Health Authorities (Drachmann 2006a). Despite her “galloping cancer,” Lea was invited on national live tele­vi­sion for a prime-­time conversation with the then Minister of Health, Lars Løkke Rasmussen; a week ­later, the Director of the Danish Health Authority was forced to resign (Drachmann and Erbahn 2017). The full-­scale, nationwide media storm that followed in the wake of the Herlev Scandal is a key testament to the indirect policy effects of the four-­week rule. The press covered the controversy in ways that may rightly be termed “pack journalism”—­the tendency of reporters to work together and cover the same kind of story across news outlets and communications departments, leaving news reporting homogeneous for a while. In the spring of 2007, journalists collaborated with clinical researchers and communicators from the Danish Cancer Society to push the media campaign further and hold administrators accountable (personal communication; see also Vestergaard 2018; Worsøe, Juul, and Knudsen, 2008). The tabloid B.T., for example, encouraged readers to share their experiences with hospital waiting times by emailing or text­ing the editors. Patients’ need for telling stories about cancer waits became greater than ever (see figure 1.1), and Lea’s feature became a journalistic exemplar of how to pre­ sent the experience. By listing the calendrical dates of individual patients’ clinical meetings, examinations, preliminary diagnoses, referrals, and scheduled radiotherapy and surgery, the journalistic reports suggested that precious time was not necessarily being wasted within hospitals. Rather, the press began constructing delay as a prob­lem taking place among health care sectors, outside the gaze of the cancer waits surveillance systems. Headlines in the press read, “I Am Examined to Death,” “Cancer Patients Die on Waiting Lists,” “Ellen Died Three Days ­after Cancer Verdict,” and “My Husband Died While Waiting”—­all echoing the same illness narrative of being threatened as much by the institutions that had been designed to help as by the cancer itself (see Frank 1995, 172). The feature on Henrik, presented at the beginning of the chapter, exemplifies how the very public, scientific, and po­liti­cal construction of delay produced its



The Waiting Time Paradox 35

figure 1.2. Science feature by Anders Legarth Schmidt, published by Politiken on June 29,

2007, presenting average cancer waits in the Danish health care system along with brain scan images of a growing tumor. The headline states, “In just 19 days, the cancer eats its way through a quarter of the jaw.”

own spiraling effects and affected its lived experiences. His terrifying story of being trapped inside the health care system was brought one month ­after a science feature in Politikken on “fatal delays” that publicized the results of a Danish head and neck tumor study, which was also mentioned by Lea’s physician. Two brain scan images from the study dominated the page: first a shot of a tumor when it was discovered, then another shot nineteen days l­ ater when the tumor had grown and “destroyed the jaw”—­making the uncertainties with regards to the personal risk of delaying almost acutely felt (figure 1.2). A t­ able in the article displayed the average cancer waits from hospital referral u­ ntil treatment, ranging from thirty days for breast cancer patients to 212 days for prostate cancer patients. In the article, the

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Danish Cancer Society claimed, “Waiting time kills one patient a day,” and they demanded on ­these grounds that “cancer should be treated as an acute condition. That is to say, without delay” (Schmidt 2007b, 5).

Concluding Discussion: The State of Not Knowing At the beginning of the chapter I presented the notion of the waiting time paradox to stress how epidemiologists have been and are still unable to observe the true, unbiased population risks of delaying cancer diagnosis and treatment (Tørring 2011). In this final discussion, I propose the waiting time paradox as an analytical lens to further our understanding of the controversy over delays by stressing how “nonknowledge” drove and settled the debate in Denmark. Thinking within the conceptual framework of biopolitics, I suggest that we may best understand the shift that took place in 2007 in terms of a tension between two modes of action: a move from risk management approaches to more vigilant modes of securing the ­future well-­ being of the Danish cancer population (Lakoff 2015; Rabinow and Rose 2006). Cancer waiting times, as we have seen, ­were long marked by a nonclosure of the longevity effect of waiting with cancer in the body. A testament to how long this ­matter remained unsettled was the second National Cancer Control Plan of 2005. In the summary of the scientific grounds for the plan, the experts explic­itly stated that studies of the importance of delays for cancer prognosis “point in dif­ fer­ent directions and remain unclarified” (Danish Health Authorities 2005, 30). In reference to the work of Christopher Daase and Oliver Kessler (2007), we may characterize this “unclarified” evidence of 2005 as a “known unknown,” representing uncertainties over delays that ­were tamed analytically and reintegrated into the decision-­making pro­cesses as calculable risks. Delay, at this point in time, was not scientifically constructed as a real danger to the public. Rather, what we saw established in the late 1990s and early 2000s was a series of gradual attempts to streamline cancer ser­vices by controlling time. Thus, national efforts to control cancer remained primarily guided by comprehensive care management plans and neoliberal governmentality tools u­ ntil 2007, when repeated appearances of the Danish gap in survival, patient stories, cancer waits, and nonclosures eventually pointed to the limit of the health care system’s capacity to govern the disease. Numerous reporters and analysists have claimed that it was the Danish head and neck tumor study that fi­nally convinced an array of Danish experts and authorities to treat cancer as an acute condition in 2007 (Olesen, Hansen, and Vedsted 2009; Pilgaard 2007; Vestergaard, Döllner, and Torpegaard 2010; Vinge et al. 2012; Worsøe, Juul, and Knudsen 2008). However, the study did not exactly prove that time ­matters; more accurately, its authors argued for a general ac­cep­tance of “not knowing” the dangers of delaying treatment, concluding that “it was not pos­si­ble to define a threshold for acceptable time intervals in order to avoid tumor growth, nor to define a subgroup that has no negative impact of delay” ( Jensen, Nellemann, and Overgaard 2007, 9). Yet judging from the ways in which the study mul-



The Waiting Time Paradox 37

tiplied uncertainties in the press and was used strategically to communicate delays as a real danger for all types of cancer, we may characterize its framing of time in relation to cancer as a type of nonknowledge or uncertainties about what we do not know and cannot know (Daase and Kessler 2007, 412). In Lea’s and Henrik’s features, we see examples of how the study conjured up the image of a “galloping cancer,” epitomizing the experience of a new precancer illness demanding new norms of vigilance. Vigilance, Lakoff clarifies, involves accepting that the f­uture cannot be known, so decision-­makers must be prepared for the worst and allow precautionary action to avoid ­later being held accountable for the results of inaction (Lakoff 2015, 45). From this perspective, we may view the head and neck tumor study as a valuable wild card in the Danish “war on cancer.” It played the successful part of revealing the “unknown unknown” relationship between time and cancer that allowed decision-­makers to fi­nally throw over the careful planning of the second cancer plan and let clinical working groups formulate the standard time frames for cancer patient pathways “without consideration of existing capacity and resources” (Probst, Hussain, and Andersen 2012, 2). In this chapter, I have attempted to document and explain the strong focus on time in Danish cancer control, proposing the notion of the waiting time paradox to emphasize the role of nonknowledge in the shifting public debates over delays and in the final po­liti­cal management of cancer waiting times. The sheer variability of cancer waits—­and the way they ­were combined in the press with Danish gaps in cancer survival and images of growing tumors—­stresses not only the intensely po­liti­cal nature of science, but also the extent to which the very scientific and po­liti­cal construction of delay affected its lived experiences and produced its own spiraling effects. I hope that the analyses presented ­here ­will inspire further reflection and debate on ­people’s subjective fears of waiting as a par­tic­ul­ ar form of anticipation at stake in the arena of early cancer diagnosis. The magnitude of danger that we face in the Danish health care system is a historically constituted experience, made and molded at the turn of the twenty-­first ­century. In conclusion, we may diagnose the agreement of acute action as an emergent moment of vigilant, vital politics of cancer. ­Today, time in relation to cancer is more than a po­liti­cal target for control. The vital character of time in relation to cancer is repeatedly constructed as a dangerous unknown in the epidemiological lit­er­a­ture (Neal et al. 2015). And while also publicly admitted to be unknown, the uncertainties regarding the risks of waiting are acutely felt. In this state of “not knowing,” time is embedded as a dangerous phenomenon in a “new” precancer disposition, increasingly a part of life and of personhood.

note 1. ​The postdoctoral study was supported by Aarhus University Research Foundation’s Centre

for Cultural Epidemics from 2012 to 2015.

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Pickstone, John  V. 2008. “Contested Cumulations: Configurations of Cancer Treatments through the Twentieth C ­ entury.” In Cancer in the Twentieth ­Century, edited by David Cantor, 164–196. Baltimore: Johns Hopkins University Press. Pilgaard, Poul Johnsen. 2007. “Alting forandret.” Weekendavisen, August 31, 2007. Politiken Staff. 1991a. “Det private sygdomsmarked vokser [The Private Healthcare Market Is Growing],” Politiken, April 14, 1991. —­—— ­ . 1991b. “Ventetid lang for kræft-­patienter [Long Waiting Time for Cancer Patients],” February 11, 1991. Probst, Helene Bilsted, Zubair Butt Hussain, and Ole Andersen. 2012. “Cancer Patient Pathways in Denmark as a Joint Effort between Bureaucrats, Health Professionals and Politicians—­a National Danish Proj­ect.” Health Policy 105 (1): 65–70. https://­doi​.­org​/­10​.1­ 016​/­j​ .­healthpol​.2­ 011​.1­ 1​.­001. Rabinow, Paul, and Nikolas Rose. 2006. “Biopower T ­ oday.” BioSocieties 1: 195–217. https://­doi​ .­org​/­10​.­1017​/­S1745855206040014. Schmidt, Anders Legarth. 2007a. “Han venter med kræft i kroppen: ‘De skal sat’me ikke få ram på mig. I hvert fald ikke endnu’ [He Is Waiting with Cancer in His Body: ‘Dammit, ­They’re Not Gonna Get Me. At Least Not Yet’].” Politiken, July 29, 2007. —­—­—. 2007b. “På bare 19 dage spiser kræften en fjerdedel af kæben [In Just 19 Days, the Cancer Eats Its Way through a Quarter of the Jaw].” Politiken, June 29, 2007. Staarup, Birgit. 1998. “Ingen mirakelkur mod ventetidens angst [No Miracle Cure against the Fear of Waiting].” Berlingske Tidende, March 20, 1998. Steensgaard, Pernille. 1995. “Danmark Europas kræftsyge land [Denmark, a Eu­ro­pean Country Suffering from Cancer].” Weekendavisen, December 15, 1995. Storm, Hans, Gerda Engholm, Timo Hakulinen, Laufey Tryggvadóttir, Asa Klint, Mette Gislum, Anne Mette T Kejs, and Freddie Bray. 2010. “Survival of Patients Diagnosed with Cancer in the Nordic Countries up to 1999–2003 Followed to the End of 2006: A Critical Overview of the Results.” Acta Oncologica 49 (5): 532–544. https://­doi​.­org​/­10​.3­ 109​/­0284186​ 1003801148. Tørring, Marie Louise. 2011. “Time from First Pre­sen­ta­tion of Symptoms in Primary Care u­ ntil Diagnosis of Cancer: Association with Mortality.” PhD diss., Research Unit for General Practice in Aarhus. —­—­—. 2014. “Hvorfor akut kræft? Et bud på en epidemisk forstå­else af tid og kræft-­tendenser i Danmark.” Tidsskrift for Forskning i Sygdom og Samfund 11 (20): 13–45. https://­doi​.­org​/­10​ .­7146​/­tfss​.­v11i20​.1­ 7222. —­—­—. 2015. “Overbevisning smitter: Feltreportage fra et cancerregister.” Jordens Folk: Etnografisk Tidsskrift 50 (1–2): 60–69. https://­doi​.­org​/­10​.­7146​/­tfss​.­v11i20​.1­ 7222. —­—­—. 2017. “Cancer and the Limits of Longevity.” BMJ (Clinical Research Edition) 357: Article j2920. https://­doi​.­org​/­10​.­1136​/­bmj​.­j2920. Tørring, Marie Louise, Alina  Z. Falborg, Henry Jensen, Richard  D. Neal, David Weller, Irene Reguilon, Usha Menon, and Peter Vedsted. 2019. “Advanced-­Stage Cancer and Time to Diagnosis: An International Cancer Benchmarking Partnership (ICBP) Cross-­Sectional Study.” Eu­ro­pean Journal of Cancer Care 28 (5): Article e13100. https://­doi​.­org​/­10​.­1111​/­ecc​.1­ 3100. Tørring, Marie Louise, Peter Murchie, William Hamilton, Peter Vedsted, Magdalena Esteva, Marianne Lautrup, Marcy Winget, and Greg Rubin. 2017. “Evidence of Advanced Stage Colorectal Cancer with Longer Diagnostic Intervals: A Pooled Analy­sis of Seven Primary Care Cohorts Comprising 11 720 Patients in Five Countries.” British Journal of Cancer 117 (6): 888–897. https://­doi​.o­ rg​/­10​.­1038​/­bjc​.2­ 017​.2­ 36. Tørring, Marie Louise, and Mette Stentoft. 2021. “Ventetidssagen.” In Når medierne sætter dagsordenen, edited by Vibeke Borberg, Hjarn von Zernichow Borberg, Christian Suhr, and Niels Valdemar Vinding, 71–97. Copenhagen: Djøf Forlag.



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Vestergaard, Marianne. 2018. “Da kræft blev en akut sygdom.” Cancer.dk, February  4, 2018. https://­www​.c­ ancer​.­dk​/­nyheder​/­da​-­kraeft​-­blev​-­en​-­akut​-­sygdom​/­. Vestergaard, Marianne, Nicolai Döllner, and Helle Torpegaard, eds. 2010. Det danske paradoks: Debatbog om kræftbehandlingen. Copenhagen: Dagens Medicin Bøger. Vinge, Sidsel, Anja Rahbæk Elkjær, Jens Albæk, and Anders Martedal. 2012. Erfaringer med kræftpakker: Fra intentioner til implementering i praksis. Copenhagen: KORA. Vrangbæk, Karsten. 2004. Ingeniørarbejde, hundeslagsmål eller hovedløs høne? Ventetidsgarantier til sygehusbehandling. Aarhus: Magtudredningen, Institut for Statskundskab. Worsøe, Søren Laursen, Svend Jørgensen Juul, and Janne Lehmann Knudsen. 2008. “Regulering i relation til kronisk sygdom og kræft som akut sygdom.” In Regulering af kvalitet i det danske sundhedsvæsen, edited by Janne Lehmann Knudsen, Mads Ellegaard Christensen, and Bente Hansen, 147–170. Copenhagen: Nyt Nordisk Forlag.

2 • ACCELER ATED DIAGNOSTICS IN SLOW MOTION Ordinary Dramas of Life and Death in the M ­ iddle Class SAR A M ARIE HEBSGA ARD OFFERSEN

Introduction In a TV spot from a Danish cancer awareness campaign, we see a man sitting in his ­house watching TV. Suddenly, a wall socket b­ ehind him short-­circuits and catches fire. He looks at it, smiles, and takes another sip of his coffee while the flames reach the curtains. A speaker says, “Watch out for the small signs and do something,” referring to a webpage about “the seven signs” that should make p­ eople consult their general practitioner. [Fieldnote description of campaign from the Danish Cancer Society in 2015]

This chapter is about the ordinariness of everyday life in what I consider as con­ temporary “regimes of anticipation” (Adams, Murphy, and Clarke 2009) of cancer and cancer control. It is about how the drama of potential cancer and death meets ordinary life. In my research I have explored how the po­liti­cal and technological enterprise of accelerated cancer diagnosis is managed in everyday life in the homes of ­people not (yet) diagnosed with cancer. In this chapter, I analyze the under­ lying assumptions about ­people’s encounter with cancer that guide health policy and research as well as expectations of citizenship in the welfare state. My focus is on ordinary ethics, understood as the effort and l­abor invested in inhabiting life and its uncertainties as moral subjects (Das 2020, 2015), and how this is reflected in bodily attention, care seeking, and notions of cancer in the everyday lives of what can be loosely categorized as the Danish m ­ iddle class (Andersen, Nichter and Risør 2017; Hay 2008; Offersen et al. 2016; Offersen, Vedsted, and Andersen 2017). I emphasize how the ordinary enfolds regimes of cancer anticipation and makes the drama of anticipated cancer less dramatic (Frumer et al. 2021). Based 42



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on this, I suggest that assumptions about an unequivocal “­will to health” ( Jain 2010, 172) in the population may obscure the nuances of what is also at stake in the ordinary, when ­people aim to achieve a desired life and make the everyday inhabitable with the drama and fundamental anticipation of cancer and other dangers and threats that “stalk the everyday” (Das 2020, 5). By contextualizing and concentrating empirically on the perception of bodily sensations as potential symptoms, on care-­seeking practices (Hay 2008; Nichter 2008), and on how and when my interlocutors paid attention to cancer in ­these pro­cesses and in their everyday lives in general (Offersen et al. 2018), I explore how the anticipated cancer is reflected in everyday—­often very undramatic—­ practices, decisions, and attentions concerning lifestyle, risk f­ actors, and embodied sensations that may (or may not) contain the potentiality of cancer (Offersen et al. 2016).

Anticipating Cancer Control beyond the Clinic On a rainy fall after­noon in 2018, I was walking through the city center on my way home from work. My mind was preoccupied with the day’s analytical work, and I tried to avoid eye contact with the street canvassers from the Danish Cancer Society, an influential patient organ­ization, who ­were blocking the sidewalk. Being unsuccessful in this endeavor and a l­ittle bit curious considering my current field of research on care seeking for cancer, I faced a young man who energetically introduced his cause: “In fact, it’s ­going ­really well in Denmark. We have reached 80 ­percent survival from cancer!” A ­ fter a small pause, maybe expecting a somewhat applauding response, he continued, “But of course we need to reach 100  ­percent survival! Do you want to support that?” The presence of cancer and cancer control beyond the clinic—on the streets, in homes, in the media—­serves as the framework for exploring cancer in the ordinary. Together with the introductory “stop the fire” cancer awareness campaign, my experience ­here—as a citizen on the street in my everyday life—­conveys two impor­tant messages of cancer control. First, it is a ­matter of survival, of life and (untimely) death. Second, as society and individuals, we can and should do something about it: react to early signs as if your h­ ouse w ­ ere on fire. In fact, a lot is being done to prevent, treat, and in general to “Break Cancer” (Knæk Cancer), as phrased in the annual fund­rais­ing campaign in Denmark. This chapter pre­sents life in the wake of what Tørring (this volume) describes as the cancer waiting time agenda of the 2000s—­a time characterized by vast and aggressive institutional attempts to make citizens act (more) promptly on symptoms to avoid late-­stage cancer and ultimately death. ­These endeavors have resulted in fast-­track cancer diagnostic pathways (Aarhus, this volume) and awareness campaigns targeting vari­ous cancer types and dif­fer­ent populations (Andersen, this volume; Merrild et al. 2017). The media coverage has included heartbreaking narratives of patients who w ­ ere not diagnosed in time to save their lives (Tørring and

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Stentoft 2021) and public debate about health policy and prioritization in the health care sector. Among my in­for­mants and in my own social network, it was no longer uncommon to be referred to a cancer diagnostic pathway by a general practitioner (GP) when presenting with vague and ambiguous symptoms (Aarhus, this volume); throughout my fieldwork ­every interlocutor I met articulated early diagnosis as the key to improved prognosis and survival in relation to cancer. The image I want to draw ­here is that of a highly efficient, publicly funded, and (not least) po­liti­cally prioritized system that is waiting—­anticipating—to be set in motion by any individual experiencing a change or sensation in his or her body that might be an early sign of potential cancer. In fact, approximately 85 to 90 ­percent of all cancers are diagnosed on the basis of symptomatic pre­sen­ta­tion (Rubin et al. 2015). In health care systems such as the Danish, where GPs serve as first-­line gatekeepers to further investigation, around 75 to 80 ­percent of all cancer patients begin their cancer journey by presenting with symptoms to their GP (Vedsted and Olesen 2015). This means that accelerated diagnostics, with its collective and individual hopes of improved survival, ultimately depends on ordinary citizens seeking care with the right symptoms at the right time. It is, however, a difficult task to know when the timing and the symptoms are “right.” Bodily experiences such as coughing, tiredness, weight changes, headaches, or a bloated stomach might be a cancer symptom—or might be just part of an ordinary embodied being in the world (Offersen et  al. 2016). The question from the street canvasser of ­whether I wanted to support the aim of a 100 ­percent cancer survival elucidates how smoothly a question of population survival becomes entwined with an everyday logic and morality: How can you say no to this question? Do you ­really want p­ eople—or yourself or your loved ones—to die from cancer if it can be avoided? Do something. Stop the fire. However, I ­will argue that this kind of straightforward logic and alarm is diluted when it encounters the moral and affective mess that everyday life is often made of. Everyday life has, to some degree, developed into an anthropologically assumed and uninterrogated, rather descriptive category, argues Sarah Pink (2012, 6–8). Veena Das has proclaimed, “Its very ordinariness makes it difficult for us to see what is before our eyes. Hence, we need to imagine the shape that the ordinary takes in order to find it. . . . ​Depending on how we conjure the everyday, the threats to the everyday w ­ ill also be seen in relation to this picture of the ordinary” (2020, 15). The shape I draw of the ordinary ­here ­will be the shape of achievement and at-­stake-­ness. It is how the ordinary is desired, pursued, and maintained. I w ­ ill unfold a par­tic­u­lar case of the achievement and maintenance of ordinary life, where the practices and narratives of ­people, and my interactions with them, lead me to consider what r­ eally ­matters (Kleinman 2006) in everyday life, as a form of ethical striving among the older generation in a middle-­class neighborhood. As an optic to catch sight of cancer anticipations in the ordinary, I dwell on events where potential illness and the agency around it come to the fore, such as when a bodily



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sensation is attended to as a potential symptom or when decisions to seek care are negotiated and made.

Engaging with the Ordinary—­Fieldwork and Study Setting With a plea for an anthropology of the everyday in his valedictory lecture, Sjaak van der Geest (2015) emphasizes the ordinary as a si­mul­ta­neously impor­tant, boring, and elusive field of investigation in anthropology and medical anthropology. In anthropologies “at home,” we tend to look for the dramatic, he argues, and overlook the “magical” in the nuances and details of ordinary events in terms of attentions to context, meanings, emotions, and intentions (79, 88). To my initial frustration, my fieldwork in everyday m ­ iddle class life was exactly this: full of ordinary details, boring and elusive. With the aim and expectation of exploring how embodied sensations came to be experienced as potential symptoms of illness that could lead to health care seeking, I was looking for something rather dramatic. Being in the field, however, ­there was not much embodied potential drama in everyday life for the anthropologist to plunge into and gradually I caught sight of the “magical” in the mess and elusiveness of the ordinary. Furthermore, I realized that my research questions had been based on ­silent assumptions of a movement, an effect, or just a reflection from the idea of accelerated diagnosis to the ordinary. This might reflect a tendency in medical anthropology, as put forward by Clara Han and Veena Das (2015, 2), of valuing concepts with a bio-­prefix over ­matters of the entanglements of living and d­ ying in the con­temporary world. Thus, by revisiting my field of inquiry in this chapter, I let the ordinary take pre­ce­ dence, to unfold how the ordinary in the conceptualization of ordinary ethics is reflected in the way ­people attend to accelerated diagnostics as part of an overall anticipatory regime. ­These questions revolving around the ordinary, early diagnosis, and embodiment have been my initial objects of interest in two ethnographic fieldwork proj­ ects, one in what can be described as middle-­class suburbia and the other in a rural region with a focus on health-­care–­seeking practices and embodied experience of sensations as symptoms (see also Andersen, Nichter, and Risør 2017; Eriksen and Risør 2014; Hay 2008; Nichter 2008; Throop 2010). Insights from both studies inform the ideas put forward in this chapter, which is thus based on three years overall of fieldwork in everyday life in the context of the Danish welfare state, consisting of repeated interviews with thirty-­one key in­for­mants over periods of one to two years and participant observation in the local communities and with local health care providers. To approach the subject of symptoms as they come to be in everyday life, I provided each interlocutor in the middle-­class suburbia study with a “symptom diary.” This was not focused on cancer and cancer symptoms but rather was meant to catch all the almost unnoticed sensorial

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experiences in daily life that would have been forgotten or not deemed relevant in the next interview. Hence, framing t­ hese as potential cancer symptoms was initiated only by the participants’ own interpretation or worry. Through the single case of my interlocutor, Jacob, this chapter mainly represents the lives of the older generation (above age sixty) in middle-­class suburbia, where I followed eigh­teen in­for­mants by interviewing and participating in selected activities in the neighborhood. At the expense of a broader repre­sen­ta­tion of the empirical material, the use of a single case in the analy­sis makes it pos­si­ble to attend to the details and subtleties of the body and the everyday that are the center of analy­sis. Jacob’s story has been carefully selected and represented ­here ­because it evokes aspects of “ordinary middle-­classness” as something that is both achieved and at stake, which I found across the empirical material. The chapter is also flavored by ten years of engagements with the arena of research, policy, and health promotion in early cancer diagnosis, when I was focused on trying to understand this policy-­level arena in light of the ordinary and vice versa.

Contours of Danish “Middle-­C lassness”: The Case of Jacob The sound of lawn mowing in the m ­ iddle of the day on a Wednesday. Laundry hanging outside on the drying rack ­because the sun has appeared. The slow-­ motion rhythm of a day in a neighborhood filled with almost-­retired residents. The housing style h­ ere, in one of the largest tract-­housing middle-­class residential areas in Denmark, frames an everyday life that by most Danes would be ste­reo­ typed as “typically Danish” (figure 2.1). The inhabitants belong largely to the older generation, and many have lived in the neighborhood since the 1970s and 1980s. Inside the walls of ­these 1970s style h­ ouses, families live their lives; they are all dif­ fer­ent, but they share the central choice of making this place their home and investing in it their hopes and wishes for their ­family life and the ­future. One of ­these families is Jacob and his wife Betty, and he w ­ ill function as my protagonist throughout this chapter. Jacob was sixty-­six years old when I met them, and he and his wife now live in their rather large ­house by themselves. They vividly tell me how, when their two ­children ­were young and still lived in the ­house, they enjoyed the ­house, the garden, and the neighborhood as a ­great and safe place to raise ­children. Their garden is neatly kept, and the surfaces and interiors of the ­house are always spotless. Th ­ ese surroundings spurred my curiosity ­toward learning how this middle-­classness is constantly achieved—­through quotidian acts of the everyday and through my in­for­mants’ engagement in telling me their stories and involving me in their lives. When comparing my account to Camilla Hoffmann Merrild’s (this volume), it becomes clear that attention to the ordinary renders vis­i­ble specific and tangible structural differences while also revealing fundamental cultural similarities in the moral striving when faced by potential cancer. This requires us to be careful as to



Accelerated Diagnostics in Slow Motion 47

figure 2.1. Straight roads and trimmed hedges in a middle-­class neighborhood. (Source: Sara Marie Hebsgaard Offersen)

how we represent and draw connections between socioeconomic conditions and assumed characteristics, and what we could call anticipatory cancer practices in the ordinary. Thus, when I unfold middle-­class life below through the case of Jacob, it is not an attempt to define some sort of category that has a determining imprint on ­these practices. Rather, it is an attempt to put into words some specificities of a fluid “middle-­classness” ( Jenkins 2012) as a set of cultural practices and values (Gullestad 1989, 77) and as an intuitive belonging in a world, a composition of attunements, affects, ethics, and embodiments that is formative of and formed by the construct of the welfare state.

The Ordinary as Achieved A shared characteristic of everyday life in most of my in­for­mants was that they enjoyed a standard of living markedly above the conditions ­under which they ­were raised and that they had worked hard to achieve it. Scarcity of money during their upbringing and their parents’ strug­gle to make ends meet seemed to have induced a focus on obtaining financial security and creating possibilities in terms of jobs and education and on using money well. The ­people living in this neighborhood ­were schoolteachers, office workers, general laborers, workmen, and social ser­vice workers.

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In dif­fer­ent ways, they had all made their own way and w ­ ere proud of what they had accomplished. They talked about their work and presented their everyday life with a pride in “being able to manage.” This mimics Bonnie Urciuoli’s finding in a study about class in the United States that “being middle-­class is a generic, and morally loaded, cultural identity, representing the triumph of individual virtue which includes good money management” and “knowing how to manage” (1993, 206). This virtue can be seen as a common thread in my interactions with Jacob, as when, for example, he proudly showed me around his workplace in the train-­repairing fa­cil­i­ty where he has worked for the past thirty-­three years. The sunlit covered patio, where most of our encounters took place, also bore evidence of the common thread of being able to manage well. Jacob and Betty had added the patio to their ­house some years back. “It was building this or buying a summer­house,” Jacob explained. Betty brought us a se­lection of cupcakes from the bakery and a fresh pot of coffee, and Jacob recounted the story of his life: I was born in the city. We lived in a two-­room apartment, you know, with a sink in the bedroom and bathroom in the basement. ­Later on, we moved to a new building in an entirely new block. ­After the war, my dad had applied for a position in the state or municipality—at that time, you would pursue the security that came with public employment. I found out ­later that it was only ­because my dad was a public servant [tjenestemand] that we could get the apartment. It was that kind of ­people that the housing administration wanted. So it was train ­drivers, train conductors, prison guards, and the like who lived all the way up in the building. And an awful lot of kids. When we reached the age of discretion [skelsår], we got a room in the attic. In fact, I got to keep my room while I was in the navy. The rent was low, and the municipality even paid for it. At that time I had met Betty, and the idea was that she should move up ­there, but, well, I ­don’t know how far we got with ­these plans ­because then one eve­ning she called me and told me that she was pregnant. Well, that was not something to cry about—we just had to figure it all out.

Jacob and Betty dreamed of owning their own ­house, which he phrased in his narrative as a commonly understood goal and causal explanation for the actions they took, but also as a ­matter of pro­gress since neither of their parents had owned a ­house. They liked the neighborhood, and they fell for the ­house, especially ­because of the L-­shaped land plot, and it was not too big or too expensive, and the down payment was something they could manage. In the case of Jacob, managing well meant managing one’s individual social and financial possibilities, but it also meant managing the collective social and financial possibilities that comprise the all-­encompassing context of the Danish welfare state. The welfare state is entangled with his and his ­father’s accomplishments and pro­ gress. The neighborhood is still, to a large extent, inhabited by the post–­World War II generations, who have fought to achieve a desired ordinary middle-­class life alongside—­and with the support of—­the development of the Danish welfare state.



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This, I argue, has cultivated an extensive moral relation between citizens and the “common good” of the welfare state that is par­tic­u­lar for this generation b­ ecause of the entangled history of their own pursuit of a better life and both the rights and obligations of citizens in the welfare state (Offersen, Vedsted, and Andersen 2017). In practice, this means that Danish citizens pay a large proportion of their income in taxes and are entitled to receive, for example, f­ ree health care, ­free education, student allowances, state pension, and unemployment benefits. The individual and collective possibilities, and what you can pursue with them, are intertwined, and yet they have dif­fer­ent moral horizons: What is “the good life” for me and my f­amily in the context of the security of the welfare state? Which rights can I claim? Which obligations should I fulfill in the welfare state to obtain my desired ordinary while still being a morally legitimate part of the community of the welfare state? Furthermore, efforts to “bend” the obligations—­for instance, by avoiding some taxes or being lucky to keep a room in the attic even though you are in the navy—­show a constant moral negotiation of what is fair and right. Cheryl Mattingly describes in her study among vulnerable African American families how their lives are so pervaded with turbulence, uncertainty, and drama that the ordinary becomes “a fragile achievement, a hard won moment of mundaneness” (Mattingly 2013, 323). In comparison with her in­for­mants, mine are not facing the same everyday dramas, but I find that—­against the background of social progression from working class to ­middle class—­the ordinariness of suburban middle-­class everyday life is not a given. It has been won over time through determination and hard work. Thus, in the context of the Danish ­middle class, the ordinary can be seen to have a similar kind of “special moral weight” as Mattingly (2013) found among her vulnerable African American families. ­Every bit of what could be considered as static ordinary life—­such as the nice and clean ­house; having a loving ­family and being a good neighbor, loyal worker, and responsible citizen; the sunlit patio, muffins from the bakery, fresh coffee—is, thus, always in motion. It has been achieved through hard work and managing strategies in work life, ­family life, and welfare citizenship, and it is at stake. It is precious and therefore precarious (see Das 2010). Jacob continued his narrative of himself and his desired ordinary. He bound the story of his ­father and himself together with anecdotes of his own son’s achievement of a similar ordinary: from the story of how he bought his son an old car when he turned eigh­teen and they repaired it together, to how his son ­later sold the car and used the profit as under-­the-­table money to get an apartment. In extensive detail, he recounted the way his son had moved in with his girlfriend who got pregnant, and how they all together managed housing, finances, and ­family. He explained, I often went on the bike to visit them and saw my daughter-­in-­law with my grand­ daughter on one arm and a pile of laundry on the other as she walked up and down the stairs. And then we would say that, even though it was a lovely apartment, we

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r­ eally thought that they should find something e­ lse. . . . ​They did also want to get a ­house, you know. And then one Sunday, my wife was reading the paper and saw an ad for this detached brick h­ ouse [murermestervilla] in the suburbs. So we rang them up, and they w ­ ere very excited. So, as it was, they found that this was the ­house. They ­didn’t have so much money, so we lent them the money for the down payment. So we fixed it, and it became a very nice ­house. sara: That sounds nice. Do they still live ­there? jacob: No, then we lost our son.

The Ordinary at Stake The ordinary is full of dangers and perils. While it is continually achieved, it is also subject to loss. The death of his son in a traffic accident was—­and is—an enormously tragic and traumatizing experience, which he painstakingly recounted to me. It may seem striking that he, in a jolly spirit and more extensively detailed than represented ­here, focused on the story of pursuing the ordinary in terms of managing well (i.e., gradually building financial strength and securing desired living conditions for one’s ­family), and then suddenly this narrative was shattered to pieces with this one sentence of loss; then silence, my own surprise and awkward attempt to come up with an empathic response, then tears and a short break in the interview. It may also seem striking that I have chosen, with this rather unfinished recounting, to end the story ­here. But Jacob did not only tell me a story about his loss; he also told me his story of what ordinary life he trea­sured and how he managed it. The death of his son is part of that story; it is part of his other­wise trea­ sured everyday life that he had built so carefully. The immediate contrast between a story built up along the same lines as I have heard so many times and the sudden loss of that same pursuit of the ordinary is a vivid image of what I call the ordinary uncertainty of everyday life (Offersen et al. 2016) and what Das has described as “the mutual shadowing of the ordinary and skepticism . . . ​that defines the character of the everyday” (Das 2010, 376). The case ­here is strong, but the life stories of my interlocutors w ­ ere full of losses in their pursuit for the ordinary. Cancer and cancer worry is part of this ordinary uncertainty, along with traffic accidents, illness, secrets, chronic pain, broken relations, m ­ istakes, misfortunes, depression, and a range of other life circumstances that entered the stories between detailed narratives of managing well and pursuing a morally loaded idea of the ordinary. It may not strike the reader as a surprise that even a welfare-­insulated middle-­ class life also consists of perils, losses, misfortune, despair, and suffering. But, and maybe I push the argument a bit ­here, it seems that the anticipatory regimes of cancer at policy level need a portrayal of a public with a safe and stable life to which cancer is the primary threat. This is, for example, reflected in campaigns that illustrate cancer and cancer symptoms as an interruption (the ­house on fire in



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the TV campaign) to this assumed stability of normative middle-­classness (the middle-­aged man drinking coffee, watching TV). What I find intriguing is how this maneuver becomes part of what Kleinman calls “our assiduous denial of existential vulnerability and limits” (Kleinman 2006, 6), when we delude ourselves into thinking that we can control life, for example, by means of biotechnological developments and anticipatory risk management strategies. This was illustrated in the street canvasser’s well-­rehearsed speak to make me join the cause and help ensure 100 ­percent survival. In terms of accelerated diagnostics, it requires a paradoxical double action: we need to anticipate to be alert to risk and potential symptoms, even while this regime of anticipation offers the delusion that we can control and limit existential uncertainty, precisely by embracing and “inhabiting degrees and kinds of uncertainty—­adjusting ourselves to routinized likelihoods, hedged bets and probable outcomes” (Adams, Murphy, and Clarke 2009, 247). Thus, this double action of anticipation leaves open a space for doubt, ambiguity, and won­der about what, exactly, we are supposed to anticipate and when to turn anticipation of f­uture illness into a­ ctual worry and health care seeking.

Care Seeking as Relation The act of care seeking is essentially a condensation of the relation between the individual and the collective, the citizen and the welfare state. It knits together the home, the clinic, and the wider society in instances of mutual expectations, as explored in dif­fer­ent ways in medical anthropological research on health care use (Frumer et al. 2021; Hay 2010; Merrild et al. 2017; Offersen, Vedsted, and Andersen 2017). In the context of the described “middle-­classness,” this relation can be traced in my interlocutors’ preoccupations with what can be termed “bio-­political correctness,” understood as central concerns about how to do ­things “right,” in relation to the health care system. When Jacob chose to consult his GP due to urinary difficulties and the entailed worry of prostate cancer, he engaged in a balancing between acting “bio-­politically correct” by presenting potential cancer symptoms “sooner, rather than ­later” and also acting bio-­politically correct by not “wasting the doctor’s time” and thus overusing the health care system with so-­called “trivial complaints” and risking being labeled a “frequent attender” in health policy terms or, even worse, being considered a “hypochondriac” among peers (Offersen, Vedsted, and Andersen 2017). In downplaying the significance of his cancer worry, Jacob phrased a well-­known refrain in prostate cancer: “it is not something you die from, it is something you die with.” At the same time, he knew colleagues and f­ amily members who have been seriously ill with and died from prostate cancer, but his GP had reassured him that he should not worry and told him that he did not like taking PSA tests ­because it would almost certainly indicate a risk of potential prostate cancer and thereby cause unnecessary worry.

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Cancer control efforts such as awareness campaigns, population screening programs, and fast-­track diagnostic pathways may add a new dimension to this relation between the individual and the collective, as they explicate a mutuality to protect and be protected by the welfare state: take care of individual health and the common good by seeking care in time for vague symptoms, yet do not overuse the health care system. Act “ bio-­politically correct”. However, the vague and elusive character of early signs of cancer complicates this balance. This double bind of the welfare state–­citizen relation poses a serious challenge to citizens, health care professionals, and health care planners in balancing ­these cultural and po­liti­ cal imperatives to act and not to act. This relation was strikingly expressed in repeated accounts and remarks from interlocutors on how they “are never ill,” “do not even remember their doctor’s name,” and “have, with time, learned that a paracetamol can be good, but a package lasts for a long time in the cupboards.” As a kind of normative self-­evaluation of their be­hav­ior, t­hese statements stand in contrast to individuals’ a­ ctual care-­ seeking practices, vari­ous chronic illnesses, and aching bodies from a life of hard work. In consideration of the “­free for all” health care system in Denmark, it is thought-­provoking how citizens put such efforts into managing their use of the health care system well. When it is not a question of ­whether or not p­ eople have access, it becomes a ­matter of the pro­cess of accessing; the task of ­doing this properly becomes a responsibility of the welfare state citizen (see also Merrild et al. 2017, and this volume). Several times during our meetings and interviews, Jacob paused our talk to take a pee break. “It is my bladder. I suffer a bit from t­ hese prob­lems,” he explained; he added, when returning from the bathroom, “­There is nothing to do about it, so I just have to live with it.” As mentioned e­ arlier, his GP dismissed the prob­lem as nothing to worry about with regard to cancer—­not yet, at least. Jacob was more ­eager to tell me about his dizziness; it could appear suddenly and acutely affects his ability to go to work or to do anything at all. However, he recounted to me quite a few times, when he went to his GP with this paramount health prob­lem, it was the only t­hing that he did not get an explanation or a solution for. The GP took a range of tests and, to Jacob’s surprise, the GP gravely proclaimed that Jacob suffered from diabetes, raised cholesterol levels, and hypertension. “And well, what ­else? It seemed ­there ­wasn’t a ­thing I did not suffer from,” Jacob concluded. The m ­ atter of dizziness dis­appeared in all the other new health conditions. A ­ fter a while, the symptom itself faded and dis­appeared. L ­ ater on, it returned, and he was diagnosed with otolithiasis vertigo (a benign condition of moving calcium crystals in the inner ear that cause a temporary and harmless, albeit uncomfortable, condition of dizziness) by his new GP. What should Jacob make of this? He had no symptoms of any of the diagnosed health prob­lems, and his symptoms appeared, at first glance, not to be related to any serious health prob­lem. And he kept on living with his urinary prob­lems, which made him rush off to the bathroom e­ very so often. My interlocutors put



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effort in and worried about reacting to symptoms in a bio-­politically correct manner of seeking care with the right symptoms at the right time. However, as Jacob’s experience shows, the ambiguity of bodily sensations—­that severe sensations can be harmless while severe conditions can exist without any bodily sensations—­ makes it difficult when you want to manage your own health and also demonstrate responsible use of the health care system.

Care Seeking as Cultural and Moral Practice Jacob offered to let me accompany him to the GP. He would get answers to some tests taken ­because of an eye hemorrhage; Betty’s fear had been that this was a sign of an increase in his blood pressure. In the consultation, the test results w ­ ere quickly glossed over—­they all looked fine. Yet the rest of the consultation with the young, empathic GP seemed like a bursting confession: Jacob admitted that he was not strictly adhering to diabetes-­friendly diet and that he feared retiring and leaving the work life he knew and cared about. In the very last minutes of the consultation, he worryingly asked ­whether he drank too much alcohol. The cultural practice of care seeking is often, as in this case, characterized by a messy conglomerate of concerns, in which more or less ambiguous and vague cancer worries (in the patient or the GP) are made and coexist with the cultural work of legitimizing care seeking in terms of both the right to get help and the responsibility to use the resources of the health care system well (see also Offersen, Vedsted, and Andersen 2017). However, many potential cancer symptoms do not make it to the consultation room. ­People won­der, worry, and think about them. They plan to just ask the GP about a mole, a per­sis­tent cough, or changes in bowel movements “the next time I’m ­going ­there anyway” (see also Andersen, this volume; Kristensen, this volume). All my interlocutors knew that symptoms like ­these are considered alarming in terms of potential cancer. They ­were very aware of the man­tra of “the ­earlier, the better,” echoing public cancer control efforts and individual lay narratives. Many had at least one chronic condition that prompted regular control visits with their GP; ­these provided them with clinical occasions where they could casually voice their uncertain worries without the need to legitimate a vague or ambiguous symptom. A few weeks ­after this consultation, Jacob noted in the symptom diary I had given him that his urinary difficulties ­were bothersome and that he “ran to the bathroom constantly.” The note continued, “Maybe it is hernia. Maybe it is my prostate. I have talked to my former and my pre­sent GP about it, and I am ­doing something about it now!” Below this, Jacob had added, “Betty has asked me to contact my GP. I d­ on’t talk much about it, but every­one knows I have prob­lems.” Jacob’s recounting of his diagnostic history was rather confusing, switching between his own and his GP’s hesitations to proceed with investigations. However, he ended up with severe pain from a hernia. This took him to the hospital, where he underwent clinical tests and investigations of the prostate,

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urinary system, and bladder, which showed “nothing alarming.” However, his severe urinary prob­lems worried the urologist, who wanted to investigate further. On the day of his consultation at the hospital, Jacob discovered blood in his urine. “It is not a good sign,” he wrote. A ­ fter several other investigations of both bladder and prostate, they found cancer cells in one out of ten biopsy samples. “No panic ­here. This was expected,” Jacob ended his note in the diary.

Discussion: Mismatched Cancer Anticipations and Illusions of Simplicity A feature of anticipatory regimes is that the uncertain ­future can be managed by speculative forecast (Adams, Murphy, and Clarke 2009, 247). What can be known by speculative forecast is loosened from the knowledge of the ­actual and the virtue of certainty (Adams, Murphy, and Clarke 2009, 247) and thus substantiates the uncertainty, ambiguity, and “embodied subjunctivity” (Andersen 2017) in symptom interpretation and care seeking. The hopes, fears, and desires residing in ­these forms of anticipation encapsulate both the hesitations and the driving forces in Jacob’s diagnostic narrative; his rather prosaic way (“This was expected”) of dealing with a probable cancer diagnosis might be seen as a feature of speculative forecast that makes him adjust to, naturally inhabit, and expect uncertainty and probability. Jacob’s story illustrates a salient discrepancy between cancer anticipation at the policy level and how it is reflected in ordinary experiences of the potentiality of cancer. Policy level constructions of accelerated diagnosis, such as fast-­track diagnostic pathways and epidemiologically delineated “alarm symptoms” of cancer, reveal and reinforce an under­lying assumption of a diagnostic pro­cess, including health care seeking, as rather linear and causally connected. This is evident in a broad spectrum of research on early diagnosis that aims, for example, to identify “barriers” to be overcome and “symptom awareness” to be enhanced as key to ­earlier health care seeking in the population (e.g., Forbes et al. 2013). This is also evident in statements about high survival goals and encouragements of individual agency—­“do something,” as shown in the introductory examples in this chapter—­ and as unquestioned “fantasies of agency” in the popu­lar culture of cancer ( Jain 2010, 170). As a manifestation of anticipatory regimes and speculative forecast, the fast-­ track pathways have shown an effect on reducing waiting times in the health care system and on relative improvements of survival prognoses ( Jensen, Tørring, and Vedsted 2017). In the orga­nizational and clinical context, it seems more natu­ral to inhabit practical linearity and “routinized likelihoods, hedged bets and probable outcomes” (Adams, Murphy, and Clarke 2009). However, in everyday life, the weight shifts to greater uncertainty; the outcomes are less probable, and specific bets are less hedged. The uncertainty becomes ordinary. The acceleration is slow motioned. And crucially, the anticipatory regimes of cancer that are manifested in



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health policies with a public health focus on individual health be­hav­ior (Cohn 2014) and “­will to health” ( Jain 2010, 172) come to construct, rather unintendedly perhaps, an imaginary of a public who has survival and disease prevention as its primary goal. Still, as explicated in this chapter, everyday life contains multiple strivings and multiple dangers and perils to what m ­ atters most to p­ eople. The everyday is, even within welfare state middle-­classness, characterized by an ordinary existential uncertainty (Offersen et al. 2016). However, as argued by Vincanne Adams, Michelle Murphy, and Adele E. Clarke (2009), our pre­sent time is characterized by the delusion that uncertainty can be tamed by anticipation (check your electrical system and avoid a ­house fire; be aware of symptoms and seek care to avoid cancer) and, as suggested by Arthur Kleinman (2006), an imaginary of certainty and control and a denial of existential vulnerability (of course we need to reach 100 ­percent survival). In this regard, I have elsewhere argued (Offersen et al. 2018) that the construction of cancer “alarm symptoms” promotes an illusion of certainty, where alarm symptoms are presented in campaigns as rather straightforward signifiers of potential cancer. I suggest that, as an aspect of anticipatory regimes and speculative forecast, this implicit claim of certainty matches neither the statistical probability it is built on nor the confusing and uncertain experience of vague embodied sensations in everyday life, as Jacob’s case of symptom appraisal and health care seeking also demonstrated. This incongruity between cancer control at the policy level (as anticipatory regime) and in everyday life (as a more ambiguously anticipating mess than is commonly acknowledged) forces our attention t­oward the central question: What is it, exactly, that ­people are attempting to anticipate? As an always pre­sent threat, potential cancer takes on a circular logic, where the threat is real when ­people feel it and becomes what Brian Massumi terms “an affective fact” (2010). This circular logic and po­liti­cal ontology of threat self-­legitimize pre-­emptive action (Massumi 2010) such as anticipatory regimes set in motion by a po­liti­cal “­will to health” ( Jain 2010, 172). Another tone of affect is set by Kathleen Stewart, whose work (2007, 2017) centers on the intensities and forces that unfold in the ordinary in a less coherent fashion. Similar to Das’s ethical striving in the everyday, Stewart argues that “­people ­labor in the very precarity of their situations” (2017, 194). In the case of potential cancer in everyday life in the welfare state, ­these two ways of understanding and expressing how affect “works” may help us understand how cancer is anticipated differently across the policy level and in everyday life, and how ­these differences create an anticipatory mismatch that might render the potential cancer drama less dramatic in the ordinary. Jacob anticipated his cancer diagnosis as part of the ordinary uncertainty of everyday life that includes threats, such as illness and suffering, to the desired ordinary that he continuously aims to achieve. Most in­for­mants expressed this kind of anticipation in statements such as “well, death must have a reason” and

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“you just have to enjoy life while you can, I say” as well as in life stories resembling Jacob’s of achieving a desired and cherished everyday life and of losses, sorrows, and sufferings within t­ hese same stories. By contrast, the TV campaign described at the beginning of this chapter and the story of my encounter with the street canvasser from the cancer organ­ization illustrate regimes of anticipation, where we— as citizens, health and welfare authorities, researchers, and activists—­anticipate that we can control cancer despite our overall anticipation of cancer as part of life. The space between this quest and hope of control and certainty, and the everyday l­abor invested by p­ eople in inhabiting life’s existential but ordinary uncertainty, is where the drama of cancer meets the ordinary and where the opposite directions of ­these anticipations contain the potential to make the drama ordinary and the ordinary dramatic. It is h­ ere that sensations are sensed, perceived, and interpreted on the continuum between normal (nothing to worry about) and abnormal (potential symptoms); it is also ­here that decisions on health care seeking are made. And it is h­ ere the accelerated diagnostics begin, depending on t­ hese pro­cesses as the inevitable first steps in the other­wise streamlined cancer pathways ­toward improved survival. In regimes of anticipation as a con­temporary feature of our time, we orient and prepare ourselves t­oward the f­uture, as argued by Adams, Murphy, and Clarke (2009). The question is, How we can anticipate that cancer can be avoided and controlled, while we also need to anticipate that we w ­ ill encounter cancer at some point in some way in our lives? This complexity reveals the anticipatory mismatch I have attempted to show in this chapter: between the (crudely put) simplistic view from the anticipatory regime of policy-­level cancer control of a population that mainly strives for cancer survival and the view from the ordinary anticipation of cancer among p­ eople who continuously strive to achieve a desired everyday life with the anticipation that cancer or other tragedies of suffering, sorrow, and death w ­ ill be part of this. This “anticipatory mismatch,” I believe, may slow down the intended acceleration of cancer diagnostics that drives the awareness campaigns b­ ecause this acceleration is completely dependent on how the ordinary and the drama of cancer meet and affect each other. In consideration of the goal of improved survival by accelerated diagnostics, it thus seems relevant for policy-­makers to pay attention to how under­lying assumptions of “­will to health” and “­will to survival” shape this goal and its strategies and to be genuinely curious about the everyday as the entrance to the accelerated diagnostics journey for most ­people.

Conclusion Viewing everyday life and the achievements and at-­stake-­ness inherent in the ordinary as ethical endeavors help us understand how ­people anticipate life and the everyday as both precious and precarious, and especially how they ­labor in the precarity of their situations (Stewart 2017) between what they hope to



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achieve and what is at stake. In terms of cancer as anticipated, the ordinary ethics, as a thread woven into the life and everyday affairs of Jacob (Das 2020, 99), has illuminated the many moral concerns, embodiments, and ordinary affects, hopes, fears, and desires among which cancer anticipations take place and among which the drama of potential cancer may conflate as an anticipated part of life’s ordinary uncertainty. To catch sight of what ­matters and how ­people inhabit their worlds as moral subjects, Das proposes a “descent into the ordinary” as a picture of anthropological thought (Das 2015, 54) and “critical patience, acts of waiting, and letting dif­ fer­ent aspects of a story ­bubble up, or be offered in one way on one occasion and in another way on a dif­fer­ent occasion” (86) as central to anthropological methodology. This resonates with my attempt to represent the ordinary middle-­classness in Denmark by specificities of a story, impressions, moods, and attunements, which has allowed me to consider how cancer as anticipation (and as real­ity, as we ­shall see in a final return to Jacob) is weaved into the ethical strivings and concerns of the everyday, as achieved and at stake, and becomes an ordinary drama of everyday life.

Epilogue The day ­after completing his thirty-­nine-­day treatment for prostate cancer, Jacob invited me out for brunch. He had made a reservation and preordered a meal for both of us. The treatment had gone well. He had experienced the course of treatment as very smooth—­“ like on a string.” It had, therefore, been easy for him to sustain his everyday life with what was impor­tant to him: he did not have to take sick leave from work. He worked from early morning and went directly to the hospital, and he felt he had not wasted his day. As we ate the delicious brunch, he told me that he had always viewed prostate cancer as “something you die with.” “But the doctors kept telling me that many also die from prostate cancer” he continued with a hint of uncertainty in his voice. And did I want another cup of coffee? ­After our brunch, Jacob was ­going to the office of Star Tours, a travel agent, to ask if they had any holiday bargains for him and Betty. Not cheap at any cost, he assured me. A place with nice food. Perhaps Greece.

references Adams, Vincanne, Michelle Murphy, and Adele E. Clarke. 2009. “Anticipation: Technoscience, Life, Affect, Temporality.” Subjectivity 28 (1): 246–265. https://­doi​.o­ rg​/­10​.­1057​/­sub​.2­ 009​.­18. Andersen, Rikke Sand. 2017. “Directing the Senses in Con­temporary Orientations to Cancer Disease Control. Debating Symptom Research.” Tidsskrift for Forskning i Sygdom og Samfund 14 (26): 145–167. https://­doi​.­org​/­10​.­7146​/­tfss​.­v14i26​.­26282. Andersen, Rikke Sand, Mark Nichter, and Mette Bech Risør. 2017. “Sensations, Symptoms and Healthcare Seeking.” Anthropology in Action 24 (1): 1–5. https://­doi​.­org​/­10​.­3167​/­aia​.2­ 017​ .­240101.

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Nichter, Mark. 2008. “Coming to Our Senses: Appreciating the Sensorial in Medical Anthropology.” Transcultural Psychiatry 45 (2): 163–197. https://­doi​.­org​/­10​.1­ 177​/­1363461508089764. Offersen, Sara Marie Hebsgaard, Mette Bech Risør, Peter Vedsted, and Rikke Sand Andersen. 2016. “Am I Fine? Exploring Everyday Life Ambiguities and Potentialities of Embodied Sensations in a Danish Middle-­Class Community.” Medicine Anthropology Theory 3 (3): 23–45. https://­doi​.­org​/­10​.­17157​/­mat​.­3​.­3​.­392. —­—­—. 2018. “Cancer-­before-­Cancer. Mythologies of Cancer in Everyday Life” Medicine Anthropology Theory 5 (5): 30–52. https://­doi​.o­ rg​/­10​.1­ 7157​/­mat​.­5.​ ­5​.­540. Offersen, Sara Marie Hebsgaard, Peter Vedsted, and Rikke Sand Andersen. 2017. “ ‘The Good Citizen’: Balancing Moral Possibilities in Everyday Life between Sensation, Symptom and Healthcare Seeking.” Anthropology in Action 24 (1): 6–12. https://­doi​.­org​/­10​.3­ 167​/­aia​.­2017​ .­240102. Pink, Sarah. 2012. Situating Everyday Life: Practices and Places. Los Angeles: SAGE. Rubin, Greg, Annette Berendsen, S.  Michael Crawford, Rachel Dommett, Craig Earle, et  al. 2015. “The Expanding Role of Primary Care in Cancer Control.” Lancet Oncology 16 (12): 1231–1272. https://­doi​.­org​/­10​.­1016​/­S1470​-­2045(15)00205​-­3. Stewart, Kathleen. 2007. Ordinary Affects. Durham, NC: Duke University Press. —­—­—. 2017. “In the World That Affect Proposed.” Cultural Anthropology. 32 (2): 192–198. https://­doi​.­org​/­10​.­14506​/­ca32​.­2​.­03. Throop, Jason. 2010. Suffering and Sentiment: Exploring the Vicissitudes of Experience and Pain in Yap. Berkeley: University of California Press. Tørring, Marie Louise, and Mette Stentoft. 2021. “Ventetidssagen.” In Når medierne sætter dagsordenen, edited by Vibeke Borberg, Hjarn v. Zernichow Borberg, Christian Suhr, and Niels Valdemar Vinding, 71–97. Copenhagen: Djøf Forlag. Urciuoli, Bonnie. 1993. “Representing Class: Who Decides?” Anthropological Quarterly 66 (4): 203–210. https://­doi​.­org​/­10​.­2307​/­3318063. Van der Geest, Sjaak. 2015. “How Can It Be!? Ethnography as Magical Realism and the Discovery of the Ordinary.” Medicine Anthropology Theory 2 (2): Article 4600. https://­doi​.­org​/­10​ .­17157​/­mat​.­2​.­2​.­275. Vedsted, P., and F. Olesen. 2015. “A Differentiated Approach to Referrals from General Practice to Support Early Cancer Diagnosis—­the Danish Three-­Legged Strategy.” Supplement, British Journal of Cancer 112 (S1): S65–­S69. https://­doi​.o­ rg​/­10​.­1038​/­bjc​.­2015​.­44.

3 • “ WHAT IF IT IS JUST HIDING?” Care Seeking and Symptom Expansion RIKKE SAND ANDERSEN

Introduction Cancer in itself is not incurable. It becomes incurable from the ­simple fact that its unfortunate victims harbour and nurse their cancers till it is too late. It is not the disease which is incurable, it is the delay that makes it so. (Childe 1906, 159)

One of the defining qualities of con­temporary cancer control is its focus on the management of time and its attempts to master the body through the acceleration of material and social modes of diagnostic inquiry (Rosa 2014, 8), or what Vincanne Adams and colleagues have called a politics of temporality (Adams, Murphy, and Clarke 2009, 246). This chapter explores the expanding role of medical semiotics (Fainzang 2011; Andersen 2017), or more specifically of how cancer symptoms feature in accelerated diagnostic practices, and in how symptoms are accordingly managed in Danish general practice clinics. As revealed by the date (the year 1906) of Charles P. Childe’s assertion about delays, the attempt to speed up cancer diagnostics is not a new approach to cancer control. “Do not delay” messages have been integrated parts of American, British, and Danish care politics for more than a ­century (Arono­witz 2001; Cantor 2008; Toon 2007). Medical historian Robert Arono­witz (2001), in his work on the American history of breast cancer, dates the linking of time and cancer to the beginning of the twentieth c­ entury. The birth of the do-­not-­delay message, he suggests, stems from widely held assumptions about the natu­ral history of cancer—­that it grows exponentially with time—­but also from surgeons’ frustrations at the skepticism, ignorance, and distrust that surrounded the treatments available in the early twentieth c­ entury. Childe was a British surgeon, and in his famous Control of a Scourge; or How Cancer Is Curable (1906) he describes cancer as a potentially curable disease if only operated on in due time. 60



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The Danish Cancer Society also campaigned to raise trust in treatments and to produce a cancer narrative that links timely diagnosis with survival. In 1946, the famous film director Carl F. Dreyer directed a promotional film on behalf of the Danish Cancer Society that advocated the do-­not-­delay message. The first scene of the movie depicts a tombstone, and we hear the voice of clinical professor Carl Krebs saying, “She waited too long.” In the following scene, Krebs explains to a seemingly uninformed audience that it does indeed make a difference to seek care in time if one suffers from a cancer. Although the core do-­not-­delay message has remained remarkably stable throughout the twentieth ­century, its focus and terrain have varied by era (Cantor 2008, 17–19). The early twentieth c­ entury cancer activists primarily linked cancer and time by engaging with what they experienced as lack of trust in treatment. In this chapter, I show how present-­day do-­not-­delay messages are directed ­toward harvesting the benefits of a radically altered medical care system and t­oward a public that has already learned to forge strong links between biomedicine, trust, and hope (Good 2001; Tørring, this volume). The po­liti­cal economy of the Danish welfare state has, since World War II, been or­ga­nized around an imperative to inhibit and alleviate all kinds of uncertainties and sufferings, and the Danish state has succeeded in securing economic growth and prosperity, increasingly through more readily available scientific and technological possibilities (Heinesen, Wahlberg, and Petersen 2021; Rod and Jöhncke 2015). The 5.8 million citizens of Denmark enjoy a generally high level of social protection. Despite increasing privatization, the central government provides universal health care coverage through tax funding, and, ideally, p­ eople benefit from ­free and equal access to care. As tentatively described in the introduction, recent developments in cancer control have reflected a con­temporary mode of welfare organ­ization that Hartmut Rosa has named “a mode of escalation” (2020, 21, 308). The organ­ization of the welfare state together with its key institutions such as the health care and educational systems are only able to maintain themselves, Rosa argues, in a mode of escalation, “meaning that they are systematically reliant on economic growth, technological and cultural acceleration, po­liti­cal activation, and, relatedly, constant innovation in order to stabilize their status quo and maintain their structure” (308). Reminiscent of this, to secure a healthy population and the safety of f­ uture welfare programs, Danish national health interventions are increasingly structured in response to predicted ­futures and crisis (Heinesen, Wahlberg, and Petersen 2021; Tørring 2017). This is also the case for cancer control, where technological innovation and demands from po­liti­cal and cancer health promoters for better survival require projecting action ever farther back into e­ arlier moments of biological tumor growth (Keating and Cambrosio 2014). In this chapter I show how an accelerated cancer diagnostics works through a logic of semiotic expansion, thereby introducing embodied ways of orientation in

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which ­people have difficulty in trusting their body-­selves. The prob­lems with eroded bodily trust compromise the certainty that pervades the do-­not-­delay campaigns, I suggest, and testify to an inherent tension in the relationship between the health care system and the public, as many consultations in general practice clinics now end in uncertainty. The argument falls into two parts. In the first part of the chapter, I cursorily reference Michel Foucault’s prediction (1963) of a receding medicine of symptoms, suggesting on the contrary that attention to symptoms is becoming an increasingly central part of con­temporary medical knowledge production. To harvest the benefits of biotechnologies, con­temporary medicine relies on ­people to seek care “as early as pos­si­ble,” and symptoms play an increasingly decisive part in this (Andersen 2017). In the second part of the chapter, I explore on-­the-­ground care-­seeking practices and suggest that accelerated diagnostics and an expanding medical semiotics challenge pre-­existing practices and understandings of what constitutes ­every day, actionable, and embodied forms of knowledge. I suggest that care seeking takes place in an abductive mode of embodied anticipation. The chapter is based on long-­term fieldwork exploring ­peoples’ decisions and moves to seek care and clinical encounters in local Danish general practice clinics in Jutland. In 2011, I was invited to conduct research on cancer diagnostics at a cross-­disciplinary research center at Aarhus University. The center was established with the intent to provide academic support for ongoing alterations of cancer diagnostic infrastructures, and this chapter discusses the findings from ethnographic research that I conducted between 2012 and 2018 on health care seeking and clinician encounters in general practice clinics. In 2012 and 2013, I conducted fieldwork in Danish general practice clinics, exploring clinical encounters and care-­seeking practices. I spent in total eight months in four Danish general practice clinics, observing clinical interactions and, in par­tic­u­ lar, the ways in which cancer is made vis­i­ble. I interviewed twenty-­two individuals (aged forty to eighty-­six years) who visited the clinics. In addition, I interviewed more than fifty health care professionals; this group included ­those who worked in the clinics where I did my fieldwork as well as several who w ­ ere invited for a series of follow-up interviews in 2018 focusing on their clinical work. In addition, I have had ongoing conversations with key cancer diagnosis researchers and activists since 2007, some of whom have been my close colleagues. I have also attended numerous conferences and meetings on cancer diagnostics, both large and small, as well as conducting follow-up visits to general practice clinics between 2014 and 2018.

Part 1: The “Symptomatic Patient” In The Birth of the Clinic (1963), Foucault describes the birth of the anatomopathological gaze and suggests that “the medicine of symptoms w ­ ill gradually recede, ­until it fi­nally dis­appears before the medicine of organs, sites, ­causes,



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before a clinic wholly ordered in accordance with pathological anatomy” (122). According to Foucault, in assigning disease to “­silent paths in the enclosed world of bodies” (159), pathological anatomy reduces the importance of clinical symptoms and substitutes for it a methodology in which truth emerges through what can be seen or made vis­i­ble within the body.1 In Drugs for Life (2012), the American anthropologist Joseph Dumit explores American phar­ma­ceu­ti­cal companies and their impact on notions of health in Amer­i­ca. Turning his attention to the use of phar­ma­ceu­ti­cal drugs, Dumit implicitly follows Foucault’s notion of a medical epistemology that engages with the interior of the body. Dumit convincingly describes a shift from an individual health model to a mass health model, where medicine “as an arm of capital (charged with maintaining workers for work) has become an industry itself ” (52–53). Medicine is no longer exclusively about enhancing individual health—­especially acute symptoms, for which treatments come to a close when health is restored. Rather, it is about treating health risks at a larger, aggregate scale. The old idea is based on symptoms you feel that make you call on the doctor, symptoms the doctor reads to diagnose you as being ill and to prescribe treatment for you that ideally cures you and returns you to health. In place of this older paradigm we have a new mass health model in which you often have no experience of being ill and no symptoms your doctor can detect, but you or your doctor often discover that you are at risk via a screening test based on clinical t­ rials that show some efficacy of treatment in reducing that risk. (8)

Somewhat on a par with Foucault, Dumit thus distinguishes between two health models: the individual health model (the old one) and the mass health model (the new one). In the individual health model, symptoms interrupt a person’s life, she seeks care, and the doctor initiates diagnostic investigations and provides a treatment. In the mass health model, a person does not experience symptoms or ­little attention is called to them. The doctor uses a checklist or screening test and discovers a treatable risk. The person is treated for this risk, but health is never restored ­because risk is “for life” (7–8). P ­ eople now learn to understand their bodies as immanently nonhealthy and to invest hope in technologies in new ways, Dumit argues. In accordance with Foucault’s accounts of the birth of pathological anatomy, con­temporary cancer diagnostics are highly aligned with biotechnology. As described by medical historian Ilana Löwy (2007, 2010), cancer is in fact a pathologists’ disease, in which cancerous cells or at-­risk states are identified within the body. Medical anthropologists and sociologists such as Sahra Gibbon (2013, 2017), Ivana Bogicevic and colleagues (2020), Peter Keating and Alberto Cambrosio (2014; Nelson, Keating, and Cambrosio 2013), and Ignacia Arteaga Pérez (2021) have demonstrated that ge­ne­tics and more con­temporary visions of personalized medicine, along with statistical techniques that differentiate populations according

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to their ge­ne­tic or molecular makeup, alter both subject experiences and ways in which cancer diseases are discoursed and treated. Overall, considerable work has been done on the “pre-­symptomatic” (Bogicevic et al. 2020; Löwy 2010) or the “at-­risk cancer person” (Fosket 2004; Gibbon 2017; Nelson, Keating, and Cambrosio 2013). Perhaps owing to the legacy of Foucault, anthropologists and sociologists have been more inclined to explore how bodies are made vis­i­ble or discoursed in con­ temporary configurations of predictive medicine and technoscience than they have been motivated to pay attention to the kinds of medical knowledge produced to move ­people and bodies around and incite care seeking, testing, or diagnostic investigations (Andersen 2017). While Foucault’s (and Dumit’s) descriptions of biopolitics continue to hold significant value in and for discussions on modern forms of governance, what Foucault’s depictions in The Birth of the Clinic did not foresee is the fact that con­temporary medical regimes are highly reliant on the timely and accelerated movement of patients. Symptoms may play a lesser part in diagnosing (as in determining who is sick with what), but they play an increasingly impor­tant part in governing care-­seeking decisions and in regulating access to diagnostic technologies (as in determining who might be sick with what). As in other parts of the Global North, ­family medicine or general practice—­ the local Danish designation—is a highly prioritized and resourced part of the Danish health care system. The Danish health care system is a gatekeeper system based on a sorting princi­ple in which it is the responsibility of general prac­ti­tion­ ers (GPs) to assess w ­ hether p­ eople need further diagnostic tests at a hospital. This means that access to cancer diagnostic technologies is nested within clinical decision-­making. The importance of symptoms in gatekeeper systems becomes apparent ­because it is through attention to and articulation of bodily changes as symptoms or clinical signs that p­ eople decide to seek medical care and/or are referred for further diagnostic investigation. This is also the case in cancer diagnostics. In Denmark, as in other parts of the Global North, only one in ten cancers are diagnosed through one of the three national screening programs (colon, cervix, breast cancer). The majority of the approximately 40,000 new cancer cases detected ­every year are diagnosed ­because an individual has sought medical advice regarding bodily changes or sensations that they for some reason found troubling and ­because a GP has made a referral based on clinical judgment (Rubin et al. 2015). The princi­ples of the gatekeeper system are also reflected in the early policy papers and research proposals that described the prob­lem of late cancer diagnosis in Denmark around the millennium (see Vedsted and Olesen 2015). As described in the introduction, at the end of the last c­ entury Denmark was struggling with high cancer morbidity and mortality levels. Cancer epidemiologists tied the gap in Danish cancer survival to a complex set of lifestyle-­related f­actors (e.g., smoking and alcohol consumption) and differences in surveillance and available treatment; however, delays in diagnosis and treatment w ­ ere identified as the main culprit in



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excess cancer deaths (Engeland et  al. 1998). The public (the potential patients) and the GPs w ­ ere described as potential delayers, and from the early 2000s, vast amounts of resources and attention w ­ ere directed t­ oward reor­ga­niz­ing the health care system and speeding up diagnostic procedure (Tørring 2014; Kristensen, this volume). The clinical guidelines for the fast-­track cancer pathways that ­were implemented (see Aarhus, this volume), which form the link between the GP offices and the hospitals, include—in addition to objectified clinical forms of knowledge such as age and smoking status—­lists of symptoms that are considered indicative of individual cancers. The guidelines for colorectal cancer, for example, specify that hemoptysis (coughing up blood), altered stool, or changes in dietary habits over a four-­week period, anemia, or other significant [betydelige] alarm symptoms such as weight loss or stomach pain should warrant a cancer suspicion. It is further specified that ­people with “other unspecific symptoms can be referred if the doctor suspects serious disease” (Sundhedsstyrelsen 2016, 10). The public has also been targeted with cancer awareness-­raising campaigns. Since around the year 2000, the Danish health authorities as well as major cancer activist organ­izations (such as the Danish Cancer Society) have launched national campaigns that warn against bodily inattentiveness and the march of time: do not delay—­a cancer caught in time may be cured. The Danish Cancer Society launched a national campaign, “Know the Seven Signs,” which encouraged the public to seek medical advice if experiencing symptoms such as prolonged coughing, unexplained weight loss, unexplained bleeding, changes in birthmarks, lumps, difficulties swallowing, or changes in bowel movements. The campaign material describes each symptom in detail, and the written text is accompanied by visual images of ticking clocks and doctors proclaiming the importance of not delaying. Danes have also been exposed to promotional campaigns resembling Dreyer’s 1946 movie, which convey Childe’s message that cancer only kills t­ hose who harbor it for too long (see Offersen, this volume). Cancer health promotion organ­izations have also produced movies with clocks ticking and living rooms on fire, stressing the dangers of inattention. The images and statements in all ­these campaigns emphasize the dangers of and the potential ­futures lost to not paying attention to embodied sensations and linking them with cancer. The role of symptoms has therefore not dis­appeared in medicine; rather, symptoms have acquired a very potent presence. But the question is, How do we come to know what cancer symptoms are?

A Logic of Expansion Attention to symptoms did not play a decisive role in the early twentieth c­ entury campaigns that Childe and Dreyer ­were part of; and throughout the last c­ entury ­there was a remarkable stability in what was considered the core list of cancer symptoms (Arono­witz 2001; Toon 2007). In the early twentieth c­ entury, ­people

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­ ere primarily taught to respond to lumps or blood, and to what ­were (at that w time) considered vaguer signs: for instance, a sore that does not heal, blood in stool, or chronic indigestion. ­Today, early diagnosis initiatives are directed ­toward most cancer types. To harvest the benefits made pos­si­ble by the ability to detect the “early tumors” through visualization technologies such as magnetic resonance imaging (MRI) and computed tomography (CT) scans, cancer health promoters turned to large-­scale epidemiological research for help. They began systematically linking early-­stage tumors with what might manifest as a change in the tangible, perceptible body. In the following, I ­will discuss what constitutes this kind of knowledge. I ­will show that strong incentives to accelerate diagnostic practices have resulted in a vast expansion of what are considered symptoms of cancer. From an epidemiological as well as a clinical perspective, knowledge of what may be considered cancer symptoms and when to respond to them rests on the speculative forecast (Adams, Murphy, and Clarke 2009, 247) of what kinds of bodily change and sensations should be considered a risk. Is the threshold reached when a person pre­sents with sensations indicative of a 2 ­percent risk of an under­ lying cancer? Or a 5 ­percent risk? Some early papers and discussions within the cancer epidemiological community suggested that pursuing a 5 ­percent risk strategy would speed up diagnostic practices ( Jones et al. 2007). Leading epidemiologists and clinicians, however, quickly realized that this would result in a rather short list of cancer symptoms, which would not solve the “delay prob­lem” (Hamilton 2009a). As an example, hemoptysis or coughing, which are considered to be “red flags” or “alarm symptoms” of lung cancer, have predictive values of approximately 0.4 and 2.4 ­percent when occurring as singular symptoms among p­ eople who have sought care. The same predictive values are reproduced when exploring the relation between rectal bleeding and colon cancer, or postcoital bleeding and ovarian cancer (Hamilton 2009a; Hamilton et al. 2016). The cancer risk that a given bodily sensation carries with it naturally increases with age and when symptoms cluster. But a 5 ­percent risk would not ensure early detection of small tumors b­ ecause it would leave too many bodily changes and sensations to simply “go unnoticed” in homes and in clinics. During the past de­cade, as the early diagnosis and do-­not-­ delay messages have gained po­liti­cal and public momentum, a still more ideological position has come into being based on the logic of urgency, resulting in the expansion of what are considered “symptoms of cancer” (Andersen 2017; Hamilton et al. 2016a). In the United Kingdom, the National Health Ser­vice recently initiated a large national make­over of cancer diagnostic guidelines. Overall, this make­over has resulted in a lowering of risk thresholds. In 2015, leading epidemiologists in the field published a report comprising lists of hundreds of cancer symptoms, specifying in detail the symptoms that warrant urgent intervention. Electronic risk tools have also been implemented in general practice medical rec­ords, prompting gen-



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eral prac­ti­tion­ers to consider a referral for further diagnostic examination if ­people presenting in the clinic have an estimated 3 ­percent risk of having cancer (Hamilton et al. 2016). Denmark has witnessed a similar pro­cess whereby p­ eople presenting with bodily changes or sensations of low risk are being examined. This is partly a response to the implementation of the national cancer pathways (2007–2009), but it has been further enhanced by ongoing initiatives. Danish epidemiologists have shown that the introduction of cancer pathways has reduced diagnostic delays for some, but only half of all individuals eventually diagnosed with a cancer initially presented in a GP clinic with symptoms that warranted a referral to a cancer pathway (Vedsted and Olesen 2015). The other half initially experienced symptoms that w ­ ere “too vague” to warrant a referral. This has spurred leading cancer researchers to argue for the implementation of more differentiated diagnostic pathways for managing ­people who pre­sent with what leading epidemiologists have referred to as vague or “low-­risk but not no-­risk symptoms” (Hamilton 2009a). The notion of low-­risk-­but-­not-­no-­risk symptoms was originally introduced by GP and epidemiologist Willie Hamilton and his research group in 2009 as part of a pro­cess of changing diagnostic pathways in the United Kingdom. Using constipation as an example of a low-­risk-­but-­not-­no-­risk symptom, they argued that NICE guidance explic­itly states that constipation does not qualify for urgent referral, despite this symptom having a risk of an under­lying colorectal cancer of just ­under 1% in the over-40s once it has been reported to primary care. Patients with a low-­r isk symptom are not rare: less than half of colorectal cancer patients have a symptom qualifying for urgent referral. (Hamilton 2009b, 441)

Hamilton (2009b) refers to constipation, tiredness, or diarrhea as examples of low-­risk-­but-­not-­no-­risk symptoms that should warrant examination. ­These are symptoms that, when presented in general practice, have a lower than 1 ­percent likelihood of indicating a cancer and that in a population who have not sought care are indicative of a much, much lower risk. In Denmark, diagnostic pathway subdivisions guided by notions of low-­ but-­ not-­ no-­ risk-­ symptoms are being implemented, and further research proj­ects have been initiated identifying the nonspecific and low-­risk-­but-­not-­no-­risk symptoms of diverse cancers. The current incentives to accelerate cancer diagnostics have thus resulted in an expansion of what we have come to know as cancer symptoms, exemplifying the way in which symptom categories have become impor­tant signifiers of action in cancer control (Andersen 2017; Andersen, Offersen, and Merrild 2023). Before I turn to explore health care seeking in a context where bodily experiences and decisions are made dependent upon probabilistic calculations of sensory experience, let me briefly turn to describe the instability that this form of knowledge production also represents.

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Instable Knowledge Epidemiological research on cancer symptoms is designed in the form of case-­ control studies. The most influential of ­these have been conducted on patient files in U.K. primary care clinics by some of the leading epidemiologists, as previously mentioned. Case-­control studies are case based, meaning they compare retrospective information on “symptom pre­sen­ta­tions” in clinics between two epidemiological populations: one with a cancer diagnosis and one with no cancer. This means that risks—or the anticipated predictive value of sensations to individual cancers—­are based on what ­people have reported to their general practitioner and what the doctors have noted in the journals. However, what ­people experience and report about their bodies in a GP clinic is not, in essence, the same kind of information that is transformed into patient journal data. This means that the data used in determining what kinds of bodily changes or sensations might be a symptom of cancer depend on how the local clinics and doctors operate (i.e., what is noted in patient files) and on local patients’ motives when care seeking (i.e., who seeks medical advice and what ­people pre­sent to their doctors). If the care-­seeking motives or clinical operations change, the epidemiological population also changes, which results in altered estimated risk levels and hence, fundamentally, in alterations in what we come to know as cancer symptoms. The knowledge basis for the definition of cancer symptoms is thus not stable across populations but is highly dependent on a variety of (shifting) sociotechnical practices (Barad 2007). Or—­one could say—it depends on the very same practices (seek care, be aware of cancer symptoms) for which it is providing a knowledge basis. Moreover, the epidemiological, case-­based approach to the identification of cancer symptoms reveals that con­temporary cancer epidemiologists cultivate the idea of the universal normal body (Lock 2017), whereby cancer is considered a standard disease, similar across similar biological bodies. Following this logic, symptoms may be identified in empirical research and grouped into taxonomies according to the under­lying cancer that is thought to cause them. For example, a colon cancer is thought to reveal itself in the same ways across h­ umans of dif­fer­ent ages or cultures, depending on the stage of the tumor growth (and stage being determined by time and tumor aggressiveness). The least aggressive and youn­gest tumors ­will produce the vaguest symptoms (irritability in the gut), and the largest and oldest ­will produce the most alarming symptoms (rectal bleeding or anemia). Therefore, cancer epidemiological studies do not take into account that the ­human body is a site of considerable commonality and difference, nor that ­people’s perceptions of potential illness are continually recast from the standpoint of many dif­fer­ent bodies, each embedded from moment to moment in a world of practice and ­future (Andersen, Nichter, and Risør 2017; Offersen et al. 2016). As discussed by Margaret Lock (2017), Lenore Manderson (Warren and Manderson 2013), and ­others (Merrild, Vedsted, and Andersen 2017; Nichter 2008), to mention only a



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few, an ethnographic approach makes it pos­si­ble to sense that the normal does not exist in any tangible or sensory sense. (I w ­ ill discuss some of the implications of this ­later.) Within medicine the idea of the universal normal body has already been u­ nder challenge for a few de­cades now. As vividly described by Lock and o­ thers (Niewöhner and Lock 2018; Seeberg, Roepstorff, and Meinert 2020), epigenet­ics has contributed to this change, suggesting that the ­human genome—­and inherently the individual’s embodied disease dispositions—­may change within a single lifetime. Lock is currently warning against the formation of neobiological reductionism (Niewöhner and Lock 2018). Also, as I have briefly touched upon, the idea of the normal body is contested in clinical visions known as personalized medicine, where tumors are theorized as highly differentiated biological phenomena. It is thus reasonable to question ­whether what we are coming to know as cancer symptoms is indeed actionable knowledge that pays attention to the biological, perceptional, or sensory differences that make up ­human lives or bodies.

Part 2: Seeking Care in the Abductive Mode In this second part of the chapter, I w ­ ill draw on the parts of my fieldwork that focused on understanding what moved ­people to seek medical care and how cancer suspicions are dealt with in GP clinics. I spent several months in Danish GP clinics and interviewed health care professionals as well as the p­ eople who visited the clinics. The interviewees had all experienced vari­ous kinds of bodily changes that had made them worry and think they needed a doctor’s advice. Most of them had vari­ous kinds of illnesses or ailments (e.g., diabetes, chronic obstructive pulmonary disease, allergies, or hypertension), but none of them had cancer. I did not bring up cancer specifically when I asked if I could interview them, and I would bring it up only very late in the interview if they had not done so themselves. But they often did. We talked broadly about their notions of health and illness, their experiences with health care, and why or when they considered themselves in need of medical expertise. Some w ­ ere hesitant when it came to taking medi­cation and accepted that they ­were at risk of developing diabetes or other conditions, but none would question the significance of “early diagnosis” of serious diseases such as cancer. Rather, the shortness of time elapsed was often used as a marker of the quality of care (i.e., my doctor did good). The same moral judgment was placed on themselves, and stories of “not wanting to miss out on potentially serious symptoms” dominated many stories of how or why the interviewees had sought medical care. Let us turn to Hanne, whom I interviewed at her ­house a few weeks ­after I had met her at her GP’s office. Hanne was upset. When I arrived at her h­ ouse, she had clearly been crying, but as she let me in, she used her hands to cover the traces of redness and tears on her

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face. She smiled, showed me into the kitchen and excused herself. I sat down at the kitchen ­table, and Hanne’s husband, Lars, showed up in the door. Like Hanne, he was in his late fifties, and he was still working as a schoolteacher. I had never been to their ­house before, and he—as tradition bids—­greeted me with a handshake and asked if I wanted a cup of coffee. I accepted, and Hanne returned. The traces of tears ­were gone, and we could “begin the interview,” she said. I had met Hanne at her GP’s (Lisa’s) clinic two weeks e­ arlier, where she had made an appointment b­ ecause her stool had changed. Lisa had ordered a test of Hanne’s stool to check if ­there w ­ ere traces of blood in them. Moments before I came to the ­house, Hanne had received the affirmative answer: small traces of blood had been found. Hanne was worried about the prospect of cancer, and she wondered if she had been too late. “I also had an upset stomach last year when we ­were in Madrid during the holidays. But I never thought of it as anything . . . ​you know.” She looks at her husband, smiles, and says, “At that time I was more concerned about your cholesterol levels, but I have not convinced you to take a test.” Lars nods and says, “No, but maybe I ­will now.” I ask Hanne why she thought that Lars should have his cholesterol levels tested, and she replies, “Well, you know, you hear p­ eople talk, colleagues and friends and the like . . . ​now they have checked this and then that. Perhaps it is b­ ecause we are growing older. You also read about it in the press. Mea­sure your blood pressure, do this, do that. . . . ​But you know, it is difficult to go and ask all ­these ­things from your doctor, ­isn’t it? And you ­don’t want to make a fuss about small ­things. But this blood, this is not small. Maybe I should have made a fuss before?” When I meet Hanne at Lisa’s clinic again a few weeks ­later, a colonoscopy has cleared her of all cancer suspicions. She is relieved. Also, Lars has booked a consultation to get his cholesterol checked, and Hanne is pleased about his decision.

Hanne’s story of care seeking is a very typical one. First, it is a story about making sense of the body while trying to be sensible. Most ­people’s decisions to seek care are rooted in reflections on what might be fair and sensible ways to conduct oneself, and not “misusing the health care system” (see Hay 2010; Offersen, Vedsted, and Andersen 2017). When p­ eople talk about ­going to the doctor, they often say, “I would not go if it was not necessary,” or “I am not one of ­those ­people who go for nothing.” “­Going for nothing” is not considered sensible. But as I have previously described, the contours of what may be considered sensible are growing rather dim. An expanding medical semiotics brings with it an infinite space of possibilities and instabilities, and attempts to tame time (Willerslev, Christensen, and Meinert 2013) have infused a sense of looming time limits that generates an urgency in acting now to protect the ­future. As noted by Hanne, she was worried that she might be “too late,” and while I was talking with her she was searching for clues in the past that she might have responded to.



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Before I turn to discuss this in more depth, let me briefly introduce one more case from the clinic: One after­noon, I was sitting in GP Carsten’s consultation room. A young ­woman, Laila (around 30 years of age), was sitting in front of him. Laila was dressed in blue overalls, as she had come directly from her job in a big w ­ holesale business that sells supplies to construction companies. Laila had called the clinic in the morning hours and booked an “acute consultation.” In Danish GP clinics acute consultations are short, (often) five-­minute time slots that may be booked by p­ eople who cannot wait (for example, a child with a high fever or in connection with suspected appendicitis). Laila had experienced pain a­ fter sexual intercourse, and she was scared that it might be a sign of something serious. She had called the clinic in the early morning hours and convinced the secretary that she needed to see Carsten for an acute consultation. Carsten told me before he saw Laila that he was not too happy about his secretary’s decision, but Laila had sounded ­really scared on the phone, and the secretary had thought that she needed to be calmed down by Carsten. Laila had specifically told the secretary that she was afraid that it might be something serious ­because her ­mother had died from cancer in the ovaries. When Laila turned up in Carsten’s consultation room, she was obviously worried. Carsten asked her if she was regularly experiencing pain, and Laila said that she had not. “Just this once.” Carsten asked her another series of questions and told her that such pains ­were not necessarily signs of illness. “It was prob­ably just caused by a scratch or dryness in your vagina. Many w ­ omen experience this,” he told her, and explained that he could not give her a proper (gynecological) examination as he only had a few minutes available. He also encouraged her to come back if the pain returned or if she experienced other kinds of symptoms. When Laila had left the consultation room, Carsten looked at me, shook his head, and stated that “­people simply scare too easily ­these days.”

Carsten is not an insensitive doctor, but he is too busy to deal with what he considers to be “small complaints,” and the amount of small complaints in the clinic is on the rise, he believes. A week l­ ater, I visited Laila in her home. She was still worried ­because she considered pain to be a sign of malignancy: “And you know what they say; the cancer can suddenly be ­there. And my ­mother was ­really young when she died.” Laila was determined that she would go and see Carsten again if her pain returned, and this time she would ask for a scan “or something like that, you know. To be sure. What if it is just hiding?” During fieldwork, I met many ­people who had had similar experiences and expressed how a verbal reassurance from the doctor was not enough to comfort them. For many p­ eople, meaningful plans of action for dealing with uncertainty involve “some kind of technology,” and this technology is rarely available in a Danish

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GP’s office. With its linoleum flooring and high-­quality, easy-­to-­clean furniture, mixed with indoor plants, art on the walls, and health care professionals dressed in everyday, ordinary clothing, the atmosphere in GP offices resembles the odd mix of a home-­state-­like atmosphere found in other welfare institutions such as kindergartens or nursing homes. Some tests (e.g., C-­reactive protein, hemoglobin A1c) and physical examinations (e.g., gynecological examinations) as may be performed in the clinic, but more invasive diagnostic investigations are always done at hospitals. Also, most Danish GPs take pride in their role as gatekeepers ­because it enables them both to protect ­people against iatrogenic harms and to safeguard the hospitals, which they consider to be common goods. An expanding medical semiotics, however, has challenged the role of the gatekeeper and ­people’s trust in this position. Lars, a thirty-­five-­year-­old entrepreneur who had sought medical advice b­ ecause of “tiredness and frequent urination,” as he put it, expressed it like this: Well, I think it is ok that they [the doctors] d­ on’t just refer all kinds of p­ eople . . . ​ but I know a bit about physiology, and I know that if the body strug­gles with something, it makes it tired. And therefore I was afraid that something serious was hiding—­physically—­inside my body and causing this tiredness. I was keen to find out what that was. Testing or a scan or what­ever. But my doctor hesitated, and I was concerned about this.

Many GPs are aware of the attraction of diagnostic technologies in terms of re-­ establishing certainty. In theory, the fear of overlooking cancer inspires individual GPs to do their best to identify ­those who are ­really in need of further testing. In practice, however, this is extremely difficult. As ­will be further discussed by Benedikte Møller Kristensen (this volume), GPs, like patients, navigate in complex systems and often in the darkness of uncertainty. The expansion of what we have come to know as symptoms of cancer and the instability that is characteristic of this knowledge, I suggest, add to the building of a culture of care seeking (Hay 2010), where the clinic is transformed into a place of uncertainty characterized by abductive reasoning (Adams, Murphy, and Clarke 2009). Tentatively following Adams and colleagues, I take abduction to refer to a temporal mode of being, in which “ideas about what to do” are generated “by tacking back and forth between nitty gritty specificities of available empirical information and more abstract ways of thinking about them” (Adams, Murphy, and Clarke 2009, 255). In the context of accelerated diagnostics, Laila and Hanne must make distinctions between everyday bodily changes or sensations such as tiredness, itching, or changes in bowel habits, and clinical guidelines only provide Carsten and his fellow doctors with some direction in the prediction of pos­si­ble hiding cancers. When patients enter the consultation room with coughing, bleeding, itching, or tiredness, the list of symptoms in the guidelines mixes oddly with the thudding temporality and emotionality of real life. Bodily changes and sensations



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such as tiredness, coughing, and pains may be ascribed to an everyday bodily normal. But an expanding medical semiotics also allows for bodily sensations to be ascribed significance through abstract—­and potentially terrifying—­imaginings of an under­lying cancer. In the context of accelerated diagnostics, the clinic is transformed into a place of uncertainty characterized by abductive reasoning. As a result, many consultations end in uncertainty and awkwardness, and the lack of closure often replaces clarity. The examples of uncertainty, however, offer a win­dow into the larger social implications of cancer control. They exemplify how the speeding up of cancer diagnostic practices is much more than a merely practical task. Accelerated diagnostics do much more than prevent “diagnostic delays.” It is a stance that encourages bodily attention in ways which have anticipatory and affective (Am I sick? ­Will I die?), moral (Am I too late? Am I behaving sensibly?), and hands-on material consequences (Do I need a scan?). It is a moral and social intervention that produces uncertainties that impact the worlds of GPs and ­those who have come to worry about cancer. As exemplified in the cases of Hanna and Laila, it sets in motion a need for diagnostic technologies that can alter the ways we practice and experience reassurance. During our conversations, both Hanna and Laila told me they trusted and appreciated the advice and care they received from their GPs. But, as Laila kept emphasizing, “He cannot know what my body looks like on the inside. What if the cancer is just hiding?” Abduction in this sense also has a temporal dimension: it names, as noted by Adams, Murphy, and Clarke, “the ‘how’ of inhabiting the pre­sent” (2009, 251) in order to predict and control the f­ uture. “It is an action of determining a course of action in the face of ongoing contingency and ambiguity” (255). And this brings me to one of the central points I wish to raise in this chapter. ­There is a vast public health lit­er­a­ture on “patient delay” that explores care seeking for cancer symptoms. Often, in this lit­er­a­ture, care-­seeking decisions are linked to acts of symptom recognition, and “delays in care seeking” are described as the result of lack of symptom recognition. As Rikke Sand Andersen and Mette Bech Risør (2014) have pointed out elsewhere, this is a simplistic understanding of what moves ­people to seek medical care. I suggest instead that care seeking should be considered an embodied life-­preserving practice caused by moments of subjective health destabilization and marked by the experience of par­tic­ul­ar sensations, sentiments, and moods. It is to be expected that the number of destabilized moments ­will increase with an expanding medical semiotics, which ­will, again, make it increasingly difficult for p­ eople to “be sensible” and know when and with what bodily changes to seek medical advice. The stories of Hanne and Laila both entail reflections on being on time and taking proper care of one’s health, and they remind us about the difficulties they face in making sense of their bodies and knowing when to seek care. As has been described by Cameron Hay (2008) and ­others (Offersen et  al. 2016; Offersen, Vedsted, and Andersen 2017), sensations are embodied. Decisions

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regarding what sensations are attended to in the first place and eventually articulated as potential symptoms are the result of intersubjective and personal awareness of cultural ideas (Meinert and Whyte 2017; Nichter 2008) and individual vulnerabilities (Merrild, Vedsted, and Andersen 2017; Offersen, Vedsted, and Andersen 2017). “The interpretation of sensations is always tentative, conditional on further cultural information regarding ­w hether the sensation should be constructed into a symptom” (Hay 2008, 221). If we accept the premise that con­ temporary medicine is a source that gives shape to the ways we pay attention to our bodies and the bodies of o­ thers (Hay 2008; Nichter 2008), then an expanding medical semiotics and the dangers communicated in the do-­not-­delay scheme introduce embodied ways of orientation in which ­people may find it difficult to trust their bodily selves, which result in clinical situations where it is difficult to bring closure.

Conclusion In this chapter, I have argued that the acceleration of cancer diagnostic practices has emphasized the importance of cancer symptoms and proliferated the growth of an expanding and instable medical semiotics. The expansion of what are considered “cancer symptoms” encourages care seeking in the mode of abduction, and it is increasingly difficult for p­ eople (and their doctors) to know w ­ hether “they are fine or sick” (Hay 2008). An expanding medical semiotics makes it difficult for ­people—­patients as well as doctors—to be sensible and show proper judgment regarding the use of health care ser­v ices b­ ecause it challenges pre-­ existing practices and understandings of what constitutes everyday, actionable, and embodied forms of knowledge. It also results in situations where it is difficult to establish diagnostic closure, compromising not only the certainty that pervades the public health lit­er­a­ture but also the role of the GP as gatekeeper.

note 1. ​This is a somewhat caricatured repre­sen­ta­tion of the wider epistemic claims made by Fou-

cault. In The Birth of the Clinic (1963), he gives a detailed historical account of the birth of anatomy and clinical science in the nineteenth c­ entury, arguing eloquently that the clinical science of medicine changed what was known to be real. In privileging the empirical sciences and the visually observed body, this new medicine propelled the pathological lesion as the “site” for disease (and ultimately death) into the foreground. Symptom-­based medicine, conventionally understood as the patient’s subjective repre­sen­ta­tion of his or her illness, thus became of less importance in the pro­cess of detecting pathologies. This shift established a new hierarchy in the clinic, in the sense that patients’ symptom repre­sen­ta­tions w ­ ere now deemed of less importance than the clinical signs identified by the doctor. Anthropologists and ­others have since borne witness to how patients’ symptom repre­sen­ta­tions are met with suspicion, particularly if no “objective cause” can be identified (e.g., Armstrong 1995; Good 1994). Th ­ ere is no room in this chapter to engage further with this point, but the argument that I am making could indicate that the hierarchical position of symptoms in the medical episteme is changing.



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—­—­—. 2017. “Entangled Local Biologies: Ge­ne­tic Risk, Bodies and Inequities in Brazilian Cancer Ge­ne­tics.” Anthropology and Medicine 24 (2): 174–188. https://­doi​.­org​/­10​.­1080​/­13648470​ .­2017​.­1326756. Good, Byron J. 1994. Medicine, Rationality and Experience: An Anthropological Perspective. Cambridge: Cambridge University Press. Good, Mary Jo Delvecchio. 2001. “The Biotechnical Embrace.” Culture, Medicine and Psychiatry 25: 395–410. https://­doi​.­org​/­10​.­1023​/­A :1013097002487. Hamilton, W. 2009a. “The CAPER Studies: Five Case-­Control Studies Aimed at Identifying and Quantifying the Risk of Cancer in Symptomatic Primary Care Patients.” Supplement, British Journal of Cancer 101 (S2): S80–­S86. https://­doi​.­org​/­10​.­1038​/­sj​.­bjc​.­6605396. Hamilton, William. 2009b. “Five Misconceptions in Cancer Diagnosis.” British Journal of General Practice 59 (564): 441–447. https://­doi​.­org​/­10​.­3399​/­bjgp09X420860. Hamilton, Willie, Fiona M. Walter, Greg Rubin, and Richard D. Neal. 2016. “Improving Early Diagnosis of Symptomatic Cancer.” Nature Reviews: Clinical Oncology 13 (12): 740–749. https://­doi​.­org​/­10​.­1038​/­nrclinonc​.­2016​.­109. Hay, M. Cameron. 2008. “Reading Sensations: Understanding the Pro­cess of Distinguishing ‘Fine’ from ‘Sick.’ ” Transcultural Psychiatry 45 (2): 198–229. https://­doi​.­org​/­10​.­1177​/­1363461508089765. —­—­—. 2010. “Suffering in a Productive World: Chronic Illness, Visibility, and the Space beyond Agency.” American Ethnologist 37 (2): 259–274. https://­www​.­jstor​.­org​/­stable​/­40784520. Heinsen, Laura Louise, Ayo Wahlberg, and Helle Vendel Petersen. 2021. “Surveillance Life and the Shaping of ‘Genet­ically at Risk’ Chronicities in Denmark.” Anthropology and Medicine 29 (1): 29–44. https://­doi​.­org​/­10​.­1080​/­13648470​.­2021​.­1893654. Jones, Roger, R. Latinovic, J. Charlton, and M. C. Gulliford. 2007. “Alarm Symptoms in Early Diagnosis of Cancer in Primary Care: Cohort Study Using General Practice Research Database.” BMJ 334 (7602): Article 1040. https://­doi​.­org​/­10​.­1136​/­bmj​.3­ 9171​.­637106​. ­AE. Keating, Peter, and Alberto Cambrosio. 2014. Cancer on Trial: Oncology as a New Style of Practice. Chicago: University of Chicago Press. Lock, Margaret. 1993. Encounters with Aging: Mythologies of Menopause in Japan and North Amer­i­ca. Berkeley: University of California Press. —­—­—. 2017. “Recovering the Body.” Annual Review of Anthropology 46: 1–14. https://­doi​.­org​ /­10​.1­ 146​/­annurev​-­anthro​-­102116​-­041253. Löwy, Ilana. 2007. “Breast Cancer and the ‘Materiality of Risk’: The Rise of Morphological Prediction.” Bulletin of the History of Medicine 81 (1): 241–266. https://­doi​.­org​/­10​.­1353​/­bhm​ .­2007​.­0007. —­—­—. 2010. Preventive Strikes: ­Women, Precancer, and Prophylactic Surgery. Baltimore: Johns Hopkins University Press. Meinert, Lotte, and Susan R. Whyte. 2017. “Social Sensations of Symptoms: Embodied Socialities of HIV and Trauma in Uganda.” Anthropology in Action 24 (1): 20–26. https://­doi​.­org​ /­10​.3­ 167​/a­ ia​.­2017​.­240104. Merrild, Camilla Hoffmann, Peter Vedsted, and Rikke Sand Andersen. 2017. “Noisy Lives, Noisy Bodies: Exploring the Sensorial Embodiment of Class.” Anthropology in Action 24 (1): 13–19. https://­doi​.o­ rg​/­10​.­3167​/­aia​.­2017​.­240103. Nelson, Nicole C., Peter Keating, and Alberto Cambrosio. 2013. “On Being ‘Actionable’: Clinical Sequencing and the Emerging Contours of a Regime of Genomic Medicine in Oncology.” New Ge­ne­tics and Society 32 (4): 405–428. https://­doi​.­org​/­10​.­1080​/­14636778​.­2013​.­852010. Nichter, Mark. 2008. “Coming to Our Senses: Appreciating the Sensorial in Medical Anthropology.” Transcultural Psychiatry 45 (2): 163–197. https://­doi​.­org​/­10​.1­ 177​/­1363461508089764. Niewöhner, Jörg, and Margaret Lock. 2018. “Situating Local Biologies: Anthropological Perspectives on Environment/Human Entanglements.” BioSocieties 13 (4): 681–697. https://­ doi​.­org​/­10​.­1057​/­s41292​-­017​-­0089​-­5.



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4 • C ANCER, IN­E QUALIT Y, AND EXPECTATIONS OF SA MENESS C A M ILL A HOFFM ANN M ERRILD

Introduction This chapter is an attempt to improve our understanding of social in­equality in cancer in a welfare state that is often understood through the gatekeeping concepts of universality, homogeneity, and sameness (Gullestad 1992). It is about sameness as an imaginary that is reflected in con­temporary approaches to cancer control which, in Denmark, are s­ haped by a strong focus on acceleration, vigilance, proactive attention to the body, and early care seeking.1 It is also about the life worlds of ­people living what I refer to as less privileged lives, and how con­ temporary cancer control fits with ­these lived realities. My background for taking on this task is a long-­standing interest in social differences in what moves p­ eople to seek medical care. My interest was initially sparked by social differences in cancer outcomes in Denmark—­particularly differences in the stage of cancer at the time of diagnoses (Dalton et al. 2011, 2019; Hansen et al. 2008). Over the years, my attention has moved from a specific interest in cancer outcomes to a more profound interest in the social disadvantages that I encountered during fieldwork. I carried out more than sixty interviews and spent 1.5 years ­doing fieldwork in social contexts that w ­ ere marked by differences in wealth and resources. I paid attention to dif­fer­ent aspects of care seeking, what p­ eople considered to be signs of illness, and how they distinguished between “the normal” and “the pathological.” I have worked with ­people who lived with a wide range of diseases, some of whom had cancer and some who did not. What they had in common was that they lived less privileged lives, in the sense of having l­ ittle or no education and low levels of income. They also had difficult ­family relations and strug­gled with multiple social, physical, and m ­ ental challenges; most of them ­were also outside the ­labor force (udenfor arbejdsmarkedet). 78



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In Denmark, being outside the ­labor force means that p­ eoples’ livelihoods are closely tied to the welfare state, primarily through the provision of welfare benefits and the obligations and responsibilities that being dependent on social support implicates, such as job training and continuous upskilling to get ­people back to work. However, as pointed out by Susanne Højlund and colleagues (2011), the welfare state acts as an ideological and normative enterprise that plays an active role in shaping the pursuit of the good life in Denmark in many other ways than merely providing economic support. It mediates f­amily life when, for instance, it deems parents unfit to raise their ­children and places such families ­under intense supervision or in the extreme cases removes c­ hildren from the home. It influences where and how ­people live by, for example, making affordable housing available in designated housing associations, thereby actively creating low-­income neighborhoods. And it most certainly plays a role in how health is managed: monitoring health status and levels of impairment in relation to the ability to work, imposing mandatory job (re)training, and testing continuously the recipients’ skills and capabilities as part of welfare-­to-­work schemes, all of which significantly impacts trust, ethics, and professional identity. ­These ­were just some aspects of my interlocutors’ experiences with the extensive Danish welfare system, which was established in the 1930s with the aims of ensuring equal rights and opportunities for all and securing a high level of social ser­vices such as education, health care, childcare, and eldercare. This model of the welfare state is based on princi­ples of egalitarianism and universalism (Esping-­ Andersen 1990), but as Norwegian anthropologist Marianne Gullestad (1992, 2002) has argued, certain public debates help us become aware of social differences and thereby rattle the foundations of egalitarian welfare society. One such debate could be the con­temporary discussions on immigration (Gullestad 2002; Jöhncke 2011; Rytter 2019). Another, I suggest, may be social in­equality in health in general, and cancer survival in par­tic­ul­ ar. Vast social differences in cancer outcomes fundamentally challenge the ideal of egalitarianism and universality with its implicit promise that all citizens have equal opportunities in all aspects of life. One point I wish to address is ­whether this focus on homogeneity, universalism, and egalitarianism hinders our understanding of, and ways of addressing, social in­equality in cancer. Imaginations and expectations of sameness seem to underpin what I call the master narrative that links social in­equality and cancer control in Denmark. It is a narrative that builds on the rhe­toric of certainty, which characterizes accelerated cancer diagnostics (seek care in time, pay attention to your body), and hides the ambiguities and uncertainties while making individual risks and responsibilities the primary ­drivers in controlling the disease (Offersen et al. 2018). I argue that imaginations of sameness, or what we have described elsewhere as expectations of sameness (Merrild and Andersen 2019), are reflected in public health approaches to accelerated cancer diagnostics. ­These expectations rest on assumptions that

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bodies and lives are equal and roughly the same across the Danish welfare state; therefore, they can be governed by the dominating ideals of what Byron Good called the medical behavioral sciences (Good 1994, 37). My argument attends to “the relation between the phenomenal and the discursive—­between, that is, experience, being, and sensate perception, on the one hand, and language, aesthetic and rhetorical forms, and communicative practices more generally on the other hand” (Desjarlais and Throop 2011, 97). One concept that has enriched my way of thinking about this is what Gullestad (1992, 2002) refers to as “­imagined sameness.” Emerging from theories of egalitarian individualism, Gullestad developed the concept of ­imagined sameness during her study of everyday life among the lower social classes in Norway. She found that social interaction and organ­ization in Scandinavia rests on a collective imagination and a form of social organ­ization that upholds social bound­aries between social groups but si­mul­ta­neously underplays social differences and hierarchies (Gullestad 1992, 63–64). This is done, Gullestad argues, by building “invisible fences” (Gullestad 2002)—­for instance, geo­graph­i­cal separation when ­people tend to live in social enclaves (e.g., social housing estates) or expensive residential areas, social seclusion (via social network, choice of schools, education, ­etc.), and cultural segregation (resulting from the other par­ameters). When I first started working in the field of social in­equality, I found myself confronted with t­hese invisible fences. My first fieldwork proj­ect was designed as a comparative study of care seeking and the experiences involved in moving from feeling fine to feeling sick (Hay 2008). I followed ­people from dif­fer­ent social backgrounds, which meant that I constantly shifted between social contexts, moving from more privileged to much less privileged settings. The social shift, which geo­graph­i­cally covered only a few kilo­meters, was fundamental. As the architecture changed, so did the concrete practicalities of life. The differences in the ways of talking, moving, and dressing, and in what occupied ­peoples’ attention, how relationships w ­ ere maintained, how time was passed, and how the good life was ­imagined w ­ ere profound and constituted life worlds that had to be understood in their own right.2 This chapter is an attempt to explore how the assumptions and expectations of accelerated cancer diagnostics overlook the lived realities of p­ eople living less privileged lives. Before I go into detail with this, let me elaborate on what I call the master narrative of social in­equality in cancer in Denmark.

The Narrative of Knowledge and Awareness Despite improvements in overall survival and quality of life, per­sis­tent inequalities in cancer continue to pose substantial challenges for improvement in cancer outcomes, and it has been suggested that if we can raise survival levels among the lowest socioeconomic groups, overall survival would increase by 5 ­percent (Dalton et al. 2019). In Denmark, and globally, social in­equality in cancer prevalence



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and survival has been subject to substantial research for many years (e.g., Dalton et  al. 2008; Woods, Rachet, and Coleman 2006). Epidemiological studies have pointed ­toward risk ­factors such as smoking, physical inactivity, overweight, exposure to ultraviolet light, work environment, and infections, all of which rise as levels of education and income decrease (Mihor et al. 2020; Olsen, Kjær, and Dalton 2019). O ­ thers have focused on differences in the stage of cancer at the time of diagnosis as a marker of in­equality in care-­seeking practices and access to care (Lyratzopoulos et al. 2013; Neal and Allgar 2005). It has also been suggested that ­people with lower incomes and education are less likely to seek medical care or to recognize so-­called alarming cancer symptoms, and they may have negative beliefs about cancer treatment (Beeken et al. 2011; Hvidberg et al. 2015). Much cancer research in the context of public health3 calls for better information about symptoms aimed at disadvantaged groups (e.g., Ibfelt et al. 2015; Larsen et al. 2020; Winther et al. 2017), which suggests that certain groups are perceived as “unknowing” or having l­ittle understanding of the significance of early symptom recognition and care seeking. ­These depictions of ­people as unknowing or ignorant, along with the po­liti­cal and practical challenges of achieving high levels of survival, play a vital role in constructing what I describe as a master narrative of social in­equality in cancer. This narrative associates inequalities in cancer with lack of knowledge and understanding, and it links certain forms of health be­hav­ ior or lifestyles, such as smoking, drinking, lack of exercise, diet, and, most recently, sexual practices with socioeconomic markers. Accordingly, the primary approach taken to reduce social in­equality in cancer has been to focus information campaigns “early” or “timely” care seeking through information on “alarm symptoms of cancer” (Andersen, this volume), with dif­fer­ent attempts to target the TV spots or printed advertisements t­ oward certain socioeconomic groups, which w ­ ill thereby provide them with the knowledge they are expected to be lacking. One example of how cancer control campaigns target p­ eople from lower socioeconomic groups has been TV spots that portray overweight men in their sixties in somewhat ste­reo­typical, low-­income settings, such as a building site, a pub, or a nondescript ­house, while they discuss care seeking and the importance of g­ oing to see the doctor when experiencing blood in the stool, which may picture a somewhat simplified ideal of how care seeking unfolds. As a strategy to reduce differences in health-­care–­seeking practices and survival among lower social classes (which is a proxy for the stage a cancer has reached at the time of diagnosis), this approach has not seemed to be successful (Davies et  al. 2018). At the beginning of 2019, the Danish Cancer Society published a White Book on social in­equality in cancer in Denmark, which presented a collective, systematic overview of the past ten years of, primarily, clinical epidemiological research on the subject (Olsen, Kjær, and Dalton 2019). The report painted a gloomy picture: social inequalities in cancer not only persist but have increased for most cancers. The report shows per­sis­tent in­equality throughout the entire cancer trajectory, from risk ­factors (lifestyle), occurrence, and stage at

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diagnosis to survival and recurrence of cancer. By way of conclusion, the report argues that inequalities in cancer can only be understood in a life perspective, where interactions between structural conditions in society, the economic context, and individual health be­hav­ior through life influence dif­fer­ent steps in the cancer trajectory—­from early development of cancer, to diagnosis, treatment, rehabilitation, palliative care, and death. (Olsen, Kjær, and Dalton 2019, 20, my translation)

This illustrates a central challenge in how we address and understand the in­equality involved, which is sometimes related with causality of risk ­factors that may lead to differences in cancer survival and other times as resulting from individual lifestyles and (uninformed) choices. Increased attention to the individual and structural connections within epidemiology, sometimes with reference to eco-­social theory and sometimes also with reference to embodiment (e.g., Krieger 2005), reflects a growing attention to context and the lived experience of ­people living in diverse social situations. Nevertheless, public health discussions on social in­equality in cancer (and in health and illness in general) rarely move to fully engaging with the meaning of ­these circumstantial ­factors and, therefore, still primarily refer to lifestyle, levels of knowledge and understanding of risk, and potential signs of cancer. In other words, explanations of social inequalities in cancer most often rest on a master narrative of flawed or faulty be­hav­iors which are considered to be ­causes of the adverse outcomes. One reason for this, I argue, is that expectations of sameness spill over onto how bodies are ­imagined and expected to act. In the cases I unfold I w ­ ill elaborate on this point and exemplify some of the complex interactions between experiences of the body, symptoms, and care seeking.

Cancer, In­equality, and the Welfare State Sandra, one of my key interlocutors, usually meets me with a smile, laughter, and lots to talk about in her hoarse, dry voice, which is prob­ably s­ haped by the many cigarettes she smokes. She has short, curly hair of an indefinable color. She looks a lot older than her forty-­four years. Her skin is wrinkled and bears the traces of the hard life that she has lived. She was born with withdrawal symptoms, and both her parents ­were addicted to dif­fer­ent forms of narcotics. Her childhood was spent passing in and out of care institutions: back to her parents, then in and out of care institutions once again. When she was thirteen, she went to live with a foster ­family, and a few years ­later social ser­vices arranged for her to go to boarding school to get her away from the bad com­pany she was in. Sandra’s biological ­father died of an overdose when Sandra was very young, and her ­mother passed away a few years ago, addicted to drugs ­until the day she died. Sandra was allocated an early retirement pension around the time she turned



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twenty-­eight ­because of prob­lems with her knees stemming from a failed operation and also ­because of her childhood. “They always bring up my childhood,” Sandra complains. “And I am so sick of it. That is also why I lost custody of my c­ hildren when their f­ ather and I divorced.” Her ­children are now grown up, but most weekends Sandra w ­ ill get a call in the ­middle of the night to go downtown to get them out of fights and scuffles. Sandra is worried about them, but she does not know how to help them, nor does she feel able to. “They ­don’t listen to me anyway,” she says. Sandra spends most of her time in her apartment ­because the pain in her knees makes it difficult for her to manage the two flights of stairs. She also has back prob­ lems from a car accident many years ago, and she is taking between ten and twenty painkillers ­every day to numb her pain. Her pills are strictly regulated by her general practitioner (GP) following several suicide attempts, which culminated eight years ago and left her in intensive care for a week a­ fter swallowing a bag full of painkillers and adrenal cortex. When Sandra is fi­nally referred for another knee surgery, she is so happy and hopeful that ­things w ­ ill look up, and her head is filled with plans and ideas about what she wants to do once she gets better. ­After the operation, she moves in with Jim and his son William. William has attention-­deficit/hyperactivity disorder (ADHD) and is very hostile t­ oward her. He calls her abusive names and refuses to accept that she is ­there, even though it is only for a few weeks, which leaves her in tears and somewhat helpless on the sofa in Jim’s home. Her recovery from the operation drags on; when I visit her, she sits inertly on her sofa with an empty look in her eyes. A few weeks l­ ater, she does not show up for our appointment, and I call her on the telephone. Her voice is tired and slow when she answers the phone. I ask how she is and tell her that I have been a ­little worried about her. “It is like every­thing is falling apart,” she sighs. “My ­daughter has got involved with drugs and now she wants to move in with her boyfriend who lives at the other end of the country, but he beats her up all the time. I cannot count all the times we have had to go down ­there and sort t­ hings out for them when they have gotten into arguments and fights. And now she wants to move away with him.” Sandra’s voice thickens, and she is in tears. Her knee is not healing ­after surgery, and she was admitted to hospital last week with a suspected blood clot. It turned out to be a pulled muscle; she is still using crutches, and she is not following the assigned rehabilitation program at the municipality. She tells me that she does not know how to get down t­ here, her knee is just hurting too much, and “the past three weeks I have just been sitting ­here crying.” This was the last time I spoke with Sandra b­ ecause I was not able to reach her ­after this phone call. Her ­whole life Sandra has strug­gled with the consequences of her parents’ addiction. Against all odds she has stayed out of trou­ble herself, but she is suffering from the effects of a lifetime of broken relations and instability. Her ties with her own ­children are difficult, ­shaped by constant stress, conflict, and disappointment and also an enormous sense of responsibility and concern. She is in constant

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pain, physically and mentally, so that, as exemplified in the field extract above, a seemingly ­simple knee operation can become a crippling and complicated pro­cess that adds to her ­mental and social overload. So what does all this mean in terms of con­temporary, accelerated cancer diagnostics? For one, it illustrates how experiences and management of the body are tied in with everyday concerns and practicalities. This may not seem a particularly groundbreaking insight, but my intention with this case is to bring attention to the life worlds—­the very practical, historically conditioned, and concrete worlds of ­people’s everyday lives (Desjarlais and Throop 2011, 91)—in which the experiences and practices of the body are carried out. But I also want to tell the story of the life worlds that do not conform to what Linnet (2011) describes as “in-­between middle-­class-­ness,” which is a form of social imaginary that most Danes subscribe to, where not sticking out is valued and something to which p­ eople aspire (Faber 2008). Sara Marie Hebsgaard Offersen and colleagues have shown how one central aspect of Danish middle-­class-­ness is living an ordinary life, managing on one’s own, and preserving the common good, for example, by using the health care system appropriately and managing without help from the welfare state (Offersen, Vedsted, and Andersen 2017). Writing in a Scandinavian context, this middle-­class-­ness bears strong connotations to what Marianne Gullestrad (1992) has described as “individualism which coexists with a strong emphasis on equality defined as sameness” (192), where fitting in or being like every­one e­ lse is of ­great importance. Nothing about Sandra’s life seems to fit the in-­between middle-­class category. Sandra lived much of her early life in institutions, and the care and support provided by the welfare state has most likely saved her life. From the day she was born, access to foster care, social benefits, and f­ree health care has provided her with a safety net and has continued to offer massive social and material support throughout her adult life. However, this support comes with a set of responsibilities as to how welfare citizenship should be enacted (Merrild and Andersen 2019), expectations that are deeply grounded in the idea of a proactive citizen who manages on her own. It has been suggested that the welfare state may be considered to be based on a system of lifelong reciprocity between citizens and the state (Rytter 2019), where the state invests in its citizens by providing them with welfare ser­vices, which they are expected to repay through taxes as well as responsible and appropriate use of the ser­vices offered. In fact, it has been argued that the very foundation of “faring well” through life in the Danish welfare state is tied in with par­tic­ul­ar forms of ethical orientation and normative expectations of what and how the good life is envisioned (Langer and Højlund 2011). When it comes to health and illness, some of ­these tendencies are embodied (Ludvigsen 2016; Offersen, Vedsted, and Andersen 2017): for instance, ­people are expected to work on maintaining healthy bodies by attending to the KRAM f­ actors of Kost (diet), Rygning (smoking), Alkohol (alcohol), and Motion (exercise).



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Interaction with the health care system, one of the fundamental pillars of the welfare society, is highly regulated by responsibility, cost effectiveness, and biomedical prioritizations (Kristensen, Lim, and Askegaard 2016). This means that healthy living is encouraged so that ­people can avoid getting sick (thus limiting their use of the health care system). Care seeking should be timely—­not too late, not too early, but at the right time—to detect serious disease before it gets too serious, without overburdening the system. However, the subjective experiences of the body and care-­seeking practices that I encountered bore l­ittle resemblance to ­these expectations or ­those of con­ temporary cancer control and symptom awareness campaigns, which emphasize attention to irregularities, excessive pain, and prolonged discomfort. Campaign messages of “seek care before it is too late” and “take alarm symptoms seriously” shift between power­ful images, such as a burning ­house or the potential loss of a ­mother, ­father, or grandparent. Cancer is portrayed as an overarching e­ nemy, which appears in small glimpses of symptoms or discomfort. Yet the ways in which the ­people I worked with experienced their bodies and sought care w ­ ere often combined with a strug­gle to get through life day by day (Merrild and Andersen 2021), a strug­gle related to a number of concerns reaching beyond the biomedical sphere and where discomfort and potential disruption w ­ ere part and parcel of their lives.4

Encounters with Cancer I first made contact with Sandra ­because of her having had cancer. Years before, Sandra had had a radical hysterectomy b­ ecause of a suspicion of cancer a­ fter an abnormal screening result. She did not know why they removed her uterus, nor was she told if they found any cancer in her uterus or cervix—­but she did not pursue an answer ­either. Whenever I tried to ask about the operation or the alterations made to her body, she would quickly change the subject; maybe she did not feel comfortable talking about it, or maybe ­because it held ­little relevance for her life now. All that r­ eally mattered to her in the pre­sent was ­whether she carried any ge­ne­tic tendencies for breast cancer or lymph cancer or something like that: I have thought about that, and I want to talk to my GP about how to get tested . . . ​I know ­there is some test that tells you that . . . ​If you are at risk of getting cancer. I know that it is pos­si­ble to have such a test; I heard about ­people who did. But how it is done I d­ on’t know, but I guess I w ­ ill have a chat with my GP about that. B ­ ecause my c­ hildren, they ­won’t survive that, if I have to go through something like that [cancer], they just ­won’t.

The quote above vividly demonstrates that Sandra cared about and understood the risk of cancer. But it also shows that her most urgent concern revolved around causing more pain and distress to her ­children.

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For all my other interlocutors, the importance of seeking care early figured vividly in their descriptions of care seeking and cancer trajectories among friends and relatives, and cancer did indeed pre­sent a scenario of worry and concern. Within cancer control, the messages of early detection emphasize a moral obligation to act on signs and symptoms of cancer with proper timing and attention, and when ­people fail to do so they are portrayed as unknowing, failing to understand the significance of potentially harmful symptoms, and failing to proactively take good care of their health and bodies. However, looking more closely at the lived realities of Sandra’s life tells another story, in which the master narrative of social in­equality in cancer, with its tenacious messages of improving knowledge and awareness as a way of improving the situation, may be somewhat simplistic if not downright naïve. One reason why the narrative proves so per­sis­tent, I suggest, may be ­because the cultural and social expectations of sameness spill over onto how bodies are ­imagined and how they are expected to be experienced and practiced. Hence, the implicit expectations of accelerated cancer diagnostics are grounded in forms of anticipated sameness—in terms of what life is like, what occupies ­peoples’ attention, what bodies mean, and how they are experienced. When ­people diverge from ­these expectations—­for instance, by not reacting “appropriately” to symptoms that are designated to raise alarm or by seeking care “too late”—­the most obvious response may be that they have not understood. Why ­else would they diverge from what is expected? Providing knowledge and raising awareness, the logic seems to go, enables ­people to act as responsible citizens who anticipate cancer by appropriately responding to prob­lems and caring for their bodies (see also Offersen, this volume). Of course, improving knowledge and awareness in order to improve in­equality in health is and has been a central tenant of public health promotion across time and space (e.g., Lupton 1995; Robinson and Pérez 2023). However, the imagination of sameness in a Danish context is not just about biological sameness but also about biographical sameness: sameness in circumstances, sameness in desires, and sameness in how ­things are expected to turn out. This may explain why in­equality in cancer persists as an unexplainable national paradox.

Symptoms and Bodies in Context As eloquently described by scholars (e.g., see Hay 2008; Lock 1993, 2001), studies of care seeking and bodily experiences of signs and sensations require contextualization. To understand connections and discuss notions of causality, it is vital that we attend to the worlds that p­ eople live in. However, con­temporary approaches to cancer control rest on assumptions about symptoms as stable entities (Andersen 2017) that can be interpreted and experienced in a somewhat similar fashion and that reflect an understanding of the universal, normal body as “the gold standard



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against which difference is seen ­either as statistical deviation or as due to cultural difference alone” (Lock and Nguyen 2010, 88). Likewise, explanations of unhealthy lifestyles and morbidity and mortality rates rest on definitions of individual lives and bodies as “normal” when they fall within the confines of statistically established tendencies defined by biomedicine as a healthy body (Lock and Nguyen, 2010, 32–56; see also Niewöhner 2021). However, as argued by Julie Livingston (2020), the prob­lem of living with comorbidity (and in destitute situations) is that bodily insults cluster together in experiences that do not fit the narratives and meta­phors of disease-­specific bio-­ sociality (166). The bodily insults experienced by Sandra had resulted in exhaustion, anxiety, and disillusion. Strug­gles with mounting social concerns and suffering from multiple physical and psychological challenges can come in many forms and may not be as palpable as ­those experienced by Sandra. They may be more subtle, albeit no less complex, as in the case of Fanny, another of my key interlocutors who has lived a difficult and challenged life. As a child, Fanny moved around a lot. Her parents w ­ ere alcoholics, and, being the eldest, she was left in charge of her younger siblings. She left school ­after tenth grade and never ­really had any formal education or training a­ fter that. For the past four years, Fanny has been living on social security benefits, and now she is undergoing job training at the competence center run by her municipality. On a cold December morning we are walking briskly t­ oward the activity center where Fanny is currently in job training [aktivering]. I am freezing despite my warm coat and woolen hat and gloves. Fanny is wearing a thin summer jacket and no gloves or hat, but she is not cold she says. Fanny is very talkative t­ oday, and much of our conversation initially revolves around her boyfriend, Brian, and the prob­lems he is struggling with. His oldest d­ aughter Sarah’s pregnancy is draining him of energy (incidentally, his youn­gest ­daughter is also pregnant). It has been de­cided that the baby, who is due within the coming month, w ­ ill be placed in foster care right ­after birth. Sarah can visit with the baby but cannot stay the night, and Brian is worried that he ­will not be able to see his grand­child. On top of that, Brian is also ­really worried about his ­mother. Fanny sighs, “She is ­really sick with her cancer.” I ask what kind of cancer his m ­ other has, but Fanny is not sure; something with the bones or maybe the blood. Suddenly, it seems like she gets annoyed with all the talk about Brian. “I also have my own stuff to deal with,” she tells me in an agitated voice. Fanny has a big meeting with social ser­vices next week where it w ­ ill be de­cided ­whether she qualifies for an early retirement pension, and she worries that they ­will refuse and she ­will be “tossed around” the system again for the next four years. “And then I have a ­daughter who is seeking attention, in the negative way,” she interrupts herself. How is that? I ask. “By r­ unning around trying to get pregnant . . . ​she seems to think that she can punish me by ­doing that.” Fanny sighs and continues

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to muse on her and Brian’s prob­lems with their c­ hildren. Suddenly she interrupts herself again, as if she has just thought of more ailments that she has to deal with: “I also have stomach prob­lems and this pain in my abdomen. It has been t­ here for a long time, and I keep getting bladder infections. I am trying to get myself together to go down ­there [to her GP] and have it all checked out.” Fanny does not have it checked out. She never brings it up with the doctor during the year I work with her, despite her frequent visits to her GP for other health-­ related prob­lems (e.g., pain, assessments of her ability to work, and her ­daughter’s overweight condition and asthma). Although Fanny experiences and explicates a potential alarm symptom—­and reflects on how she ­ought to have it checked out—­her somewhat chaotic living situation influences her care seeking more than her experience of symptoms (which may, in fact, indicate cancer). This exemplifies a way of being in the world where urgency and severity are most often grounded in subjective life worlds (Throop and Murphy 2002).

Biosocial Realities Each in their own way, the stories of Fanny and Sandra encourage us to consider the master narrative of in­equality in cancer in the context of cultural, social, and po­liti­cal expectations of sameness. Their stories push back at the master narrative as they articulate a dif­fer­ent form of bio-­sociality that is largely absent in the explanations of social in­equality in cancer in the Global North. Th ­ ese stories comprise difficult childhoods, poverty, unemployment, and desperate situations that have made it impossible to fare well through life, and they highlight some of the challenges when reducing social in­equality in cancer to merely a lack of knowledge and awareness. Within anthropology, Margaret Lock has been one of the most influential critics of biomedically informed understandings of the universal body. Through substantial comparative analy­sis she has established how sociocultural environments and biology are deeply intertwined, and how experiences of sensations are embedded in both the biological and the social (e.g., Lock 1993, 2001). Empirically and theoretically, the perspectives offered by the key concept of local biologies (or what Lock has since rephrased to “situated biology”; Niewöhner and Lock 2018) have enriched our understanding of the practices and experience of bodies, encouraging attention to the social production of biological difference. One of the main contributions that the concept of local biologies has made is the recognition that bodies are experienced and practiced differently. More importantly, bodies also may be considered as being dif­fer­ent, grounded in the ways in which biological and social processes—­nature and nurture—­are everywhere entangled and profoundly influence well-­being (Nguyen and Lock 2010, 319). I am by no means the first to point to differences in how the body speaks (Das and Das 2007), but the point I wish to make h­ ere is slightly dif­fer­ent. It is about



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more than embodied experiences of signs and symptoms, about vigilance, attentiveness, knowledge, or awareness. It is about how our social and cultural forms of interaction and organ­ization may obscure the texture, the very material that constitutes social inequalities in cancer and about how con­temporary approaches to cancer control think about, describe, and try to manage t­ hese inequalities. Let me, by way of conclusion, turn ­toward one of my interlocutors, Simon, to describe how subjective counternarratives, however quiet they may be, challenge the master narrative of social in­equality in cancer through assumptions of biographical and biological sameness.

Lives and Bodies Entangled Simon was diagnosed with bladder cancer in 2012. “I guess I waited way too long before I was diagnosed,” he tells me. He continues on to explain how he had blood in his urine, but the doctors kept telling him that nothing was wrong. A ­ fter a long and difficult period of treatment and recovery, he was fi­nally getting back on his feet when a sore appeared on his tongue that did not heal. One month passed, maybe two, and eventually his wife Anna convinced him to go and see his GP. It was cancer—­once again. When I visit Simon for the first time, he has finished his second treatment regime, and his body is disfigured by radiation and surgery. He has a large hole in his jaw, his tongue is gone, and he has only one, brownish tooth left in his mouth. He can barely speak, and Anna has to translate much of his incomprehensible speech sounds for me. He is still, however, the man of the h­ ouse. It is clear in the way that he talks and in his matter-­of-­fact way of drinking his beer while Anna and I are having coffee and biscuits. Simon has worked as a fisherman and a manual laborer all his life, and he never ­really had much interaction with the health care system before he got sick with cancer. “He was the kind of man who went to work even though he had the flu,” Anna tells me proudly, and he managed for years with his disabling arthritis. Nowadays, however, t­ hings are dif­fer­ent; Simon spends much of his time g­ oing in and out of hospital. Simon seems tired, perhaps a ­little drunk, and even though he tries to be polite and patient, he responds to my questions more or less abruptly, and I have difficulty engaging him in conversation about his health. It is not b­ ecause Simon does not want to talk. He explains how he was diagnosed, and he eagerly tells me about his previous work life and how he met Anna at the harbor where he and Anna’s ­father both worked on fishing vessels. But whenever our conversation turns t­ oward how he lives with cancer and how getting sick has impacted his everyday life, he seems to drift away and appear uninterested—­even dismissive. Simon’s brusqueness also surfaces when I try to turn our conversation ­toward f­amily and social relations. When I ask him about their neighbors and the ­people who live in the locality, he brushes me off: “We

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d­ on’t talk much with anyone; p­ eople keep to themselves around h­ ere.” He has no contact with his siblings, nor with his ­children or grandchildren. Anna still works although she suffers from chronic pain in her joints and in her abdomen. It is hard for her to continue in the canteen where she is currently a temporary worker, but she has to make ends meet. Simon spends most of his time alone, which seems to suit him fine. He does not like to leave the ­house ­because he worries that his ostomy might break. His balance is also bad; he trips easily, but he does not want to use a cane or a walker. “He is quite stubborn,” Anna sighs. The falls have left him with bruises, broken bones, and a lot of pain—­ but he does not like to take painkillers. When I ask him why not, he dismissively replies, “I just d­ on’t,” suggesting that this is not something that needs to be discussed. When I left Simon and Anna’s small, dark, and smoke-­filled terraced h­ ouse, I  felt discomforted—in fact, disheartened—­about how the master narrative of in­equality in cancer overlooks fundamental aspects of what it means to live less-­ privileged lives in the Danish welfare state. How are Simon and Anna’s life worlds, which inform and give meaning to their lived experience of health, illness, and the body (Throop and Murphy 2002), to be affected by information campaigns that underline the importance of acting early on alarm symptoms? Simon knew he had waited “too long,” and Anna knew that his unhealing sore could be serious. Their bodies testify to the hard life that they have both lived, where the day-­to-­day strug­ gle leaves them ­little attention to or concern about their ailing bodies—­lived realities that are rarely considered by accelerated cancer diagnostics. As the cases I have presented illustrate, the social and the biological circumstances of ­people’s lives are entangled, and sometimes, one could say, the social eats biology for breakfast. If we try to unravel the situations of Sandra, Fanny, and Simon from this perspective, ­these entanglements are obvious. Sandra’s recovery from her knee operation and her experience with cancer prevention is just one example of how her management of her body is firmly tied to her social circumstances and less tied to her understanding of how she might improve her prognosis. Likewise, it seems reasonable to ask ­whether Fanny’s care seeking for complaints that, from a biomedical perspective, may seem less impor­tant than her potential cancer symptoms, and Simon’s numbness and his aloneness with his crippling cancer experience, may be explained by lack of knowledge and awareness, health literacy, personal traits, and abilities. They prob­ably are not. But looking into the particularities of their social situations—­how the layering of their physical and ­mental ailments influence the ways that health and illness are subjectively constituted—­teaches us about situated experiences, attributions of meaning, and cultural constitutions of dif­fer­ent life worlds (Throop and Murphy 2002). Without attending to ­these life worlds and situated biologies, our understanding of social in­equality in cancer remains ­limited b­ ecause it is in t­hese life worlds that in­equality is lived, felt, and managed.



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­Toward an Assumption of Difference The master narrative of social in­equality in cancer unfolds as causal explanations that focus on individual competencies and characteristics: lack of knowledge or understanding of potential alarm symptoms, or risky be­hav­ior and late care seeking. My intention has been, in part, to draw attention to how settling blame on knowledge or ability implies a failure to live up to the expectations of sameness in terms biologies, biographies, expectations, and endings. The focus on proactivity, symptom recognition, and early care seeking that characterizes con­temporary cancer control does not seem to recognize the variations in how lives are lived and how bodies are experienced and practiced across dif­fer­ent social groups. This is not to suggest that some segments of the population are indifferent to the risk of getting cancer—­they are as concerned as anyone ­else. But I would suggest that attempts to explain social in­equality in cancer in terms of knowledge, understanding, and inappropriate health be­hav­ior overlook the significance of the immediate, day-­to-­day strug­gles faced by ­people who are living with multifactorial challenges. I have argued that expectations of sameness in the realm of cancer control overlook the diverse realities of ­people living in the Danish egalitarian society—­realities related to the broader social and po­liti­cal structures—­that are difficult to embrace within the master narrative of social in­equality in cancer. Epidemiological studies increasingly incorporate contextual f­ actors in descriptions of in­equality in cancer (Krieger 2005; Olsen, Kjær, and Dalton 2019). Th ­ ese descriptions, however, remain just that: descriptions. They refer to context, but they do not (and perhaps cannot) engage with how life is lived within ­these categories. The almost circular explanation of cancer in­equality with reference to education, income, or habitation status reveals the challenges of fully engaging with how lives (and bodies) are conditioned by their situation in the world (Desjarlais and Throop 2011). Approaching in­equality from a more contextual perspective may be difficult to incorporate, let alone operationalize, in population-­based descriptions of in­equality in cancer, and the complex realities of living in difficult social circumstances are hard to embrace within causal explanations. However, attending to the a­ ctual lived experience of p­ eople—­and what it means to live lives that are affected by strug­gle, hardship, dreams, and aspirations—­may enrich our understanding of social differences in cancer outcomes in more refined ways than referring to individual character traits. A point that one may tentatively draw from this is that con­temporary discussions and explanations of social in­equality in cancer unwittingly place some groups of p­ eople outside the conformity of the welfare state, using labels for them such as noncompliers, delayers, and difficult or uninformed patients who take up too much time. In fact, ­these discussions ostracize large parts of the population, who live in less privileged situations, by rendering certain forms of suffering more legitimate than ­others (Wilkinson and Kleinman 2016). Confronting the master

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narrative with the lived realities of dif­fer­ent social worlds enables us to consider the multiplicity of suffering and hardship experienced by ­people living less privileged lives: what moves ­people, what ­matters to them, what occupies their attention? Hence, one step t­oward understanding what is at stake when we talk about social in­equality in cancer (and most other areas of health) is to recognize and acknowledge the lived realities of ­people from all parts of society, perhaps from a respectful assumption of difference. This is not to suggest essentialist constructions of cultural difference, with potential implications of designating deviance, health deservingness, or access to care or even citizenship (Martín 2017), but rather to challenge the expectations of sameness not only in terms of how lives may be lived, but also how health and illness may be experienced.

notes 1. ​See the chapter by Rikke Sand Andersen this volume for further elaboration about how this

focus evolved in the early 2000s. 2. ​I have described this elsewhere as “parallel lives” (Merrild 2015). 3. ​I understand public health broadly to refer to health promotion (messages and campaigns) directed at the public with the intent of assisting ­people with improving health and preventing illness. 4. ​I do not mean to suggest that reacting to cancer alarm symptoms is a straightforward pro­ cess for p­ eople who live more privileged lives. The chapter by Sara Marie Hebsgaard Offersen this volume enriches our understanding of the complex pro­cess of navigating con­temporary cancer control, what she refers to as living with cancer as potential.

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Niewöhner, Jörg, and Margaret Lock. 2018. “Situating Local Biologies: Anthropological Perspectives on Environment/Human Entanglements.” BioSocieties 13 (4): 681–697. https://­ doi​.­org​/­10​.1­ 057​/­s41292​-­017​-­0089​-­5. Offersen, Sara Marie Hebsgaard, Mette Beck Risør, Peter Vedsted, and Rikke Sand Andersen. 2018. “Cancer-­before-­Cancer Mythologies of Cancer in Everyday Life.” Medicine Anthropology Theory 5 (5): 30–52. https://­doi​.­org​/­10​.­17157​/­mat​.­5​.5­ ​.5­ 40. Offersen, Sara Marie Hebsgaard, Peter Vedsted, and Rikke Sand Andersen. 2017. “ ‘The Good Citizen’: Balancing Moral Possibilities in Everyday Life between Sensation, Symptom and Healthcare Seeking.” Anthropology in Action 1 (1): 6–12. https://­doi​.o­ rg​/­10​.­3167​/­aia​.­2017​ .­240102. Olsen, Maja Halgren, Trille Kristina Kjær, and Susanne Oksbjerg Dalton. 2019. Hvidbog social ulighed i kræft i Danmark. Copenhagen: Kræftens Bekæmpelse. Robinson, Kelly Fagan, and Ignacia Arteaga Pérez. 2023. “ ‘Hard-­to-­Reach’? Meanings at the Margins of Care and Risk in Cancer Research.” In Cancer and the Politics of Care Inequalities and Interventions in Global Perspective, edited by Linda Rae Bennett, Lenore Manderson, and Belinda Spagnoletti. London: University College London Press. Rytter, Mikkel. 2019. “Writing against Integration: Danish Imaginaries of Culture, Race and Belonging.” Ethnos 84 (4): 678–697. https://­doi​.­org​/­10​.­1080​/­00141844​.­2018​.­1458745. Throop, Jason, and Keith M. Murphy. 2002. “Bourdieu and Phenomenology: A Critical Assessment.” Anthropological Theory 2 (2): 185–207. https://­doi​.­org​/­10​.­1177​/­1469962002002002630. Wilkinson, Ian, and Arthur Kleinman. 2016. A Passion for Society: How We Think about ­Human Suffering. Oakland: University of California Press. Winther, Dorte, Tina  K. Nygaard, Trine  A. Horsbøl, Trille Kjær, Peter Vedsted, Christoffer Johansen, Hanna B. Hovaldt, Mette Sandager, and Susanne Oksbjerg Dalton. 2017. “Associations between Education and Physical Functioning and Pain in Adult Danish Cancer Survivors.” Acta Oncologica 56 (2): 348–353. https://­doi​.o­ rg​/­10​.1­ 080​/­0284186X​.2­ 016​.1­ 268712. Woods, Laura M., Bernard Rachet, and Michel Coleman. 2006. “Origins of Socio-­Economic Inequalities in Cancer Survival: A Review.” Annals of Oncology 17 (1): 5–19. https://­doi​.­org​ /­10​.1­ 093​/­annonc​/­mdj007.

5 • THE GHOST OF C ANCER IN THE CLINIC BEN ED I KTE M Ø LLER KRISTENSEN

Cancer is the ghost of most consultations. Cancer suspicion is somehow always lurking. I initially always think the worst, and then I use the consultation to verify or disprove it. Still, . . . ​it can be difficult to rule out, b­ ecause . . . ​ anyone can hide cancer, without showing any alarm symptoms as such. (Nanette, a twenty-­nine-­year-­old general practitioner)

It is early March, a sunny after­noon in a small town in western Zealand. Spring has just arrived, daffodils and fruit trees are blooming across the town, and so are seasonal ills. I am sitting together with Nanette and her older colleague, Peter. I have asked them to reflect on their experiences with cancer diagnosis and how they have experienced the changes that have been implemented with the focus on “early diagnosis” and the fast-­track cancer pathways. Nanette has only been working at the clinic for a few months and just recently became a general practitioner (GP), and she explains how she often worries that she “might miss something” ­because she does not know the patients. Peter nods and explains that knowing the patients guides him but that it can also be “a trap” and prevent you from spotting serious illnesses, particularly in the case of patients who often worry. The quest to detect cancer early has resulted in both an expansion of symptom categories (blurring former distinctions between the normal and the pathological) (Andersen, this volume) and an increase in the number of patients a GP is expected to refer for further diagnostic testing at the hospitals. During the past de­cade, Danish GPs have been advised to lower their risk thresholds, but this is difficult advice to follow. As the words of Nanette and Peter reveal, cancer diagnostics in a time of early diagnosis do not merely require guidelines but also somehow entail the skills of navigating the ghostly traces of cancer within the familiar. The figure of the ghost may initially appear to be simply a reflection of the clinical uncertainty intrinsic to medicine, which ju­nior doctors, according to established clinical wisdom, must learn to tolerate and manage (Simpkin and Schwartstein 2016). However, I found that the ghost of cancer is emblematic of 96



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the elusive and affective aspects of cancer diagnostics in con­temporary general practice. In this chapter, I suggest that the po­liti­cal efforts to ensure early diagnosis of cancer both fix and order the diagnostic categories—­but they also unsettle and haunt the clinical encounter and the GP’s diagnostic work. The ghost of cancer captures the ghostly workings of clinical standards on early cancer diagnosis: despite being a rare disease in general practice, cancer is somehow ceaselessly pre­ sent as a potentiality b­ ecause “anyone can hide cancer, without showing any alarm symptoms as such,” as stated by Nanette. To unpack t­hese workings, I bring together two areas of scholarship: studies exploring the fluidity of diagnosis, such as the work of Mette Bech Risør and Nina Nissen (2018), who suggest that context and time are not merely a neutral background for diagnosis but vibrant cultural phenomena feeding into diagnostics, and Jacques Derrida’s work (1994) on the emergence of the ghost or specter, as I explore how the risk of cancer evokes vague and pre­sent sensations at the clinic. Derrida argues that the emergence of the ghost imposes a relational ethic on the haunted, an ethic unsettling the division between the good and the bad, demanding that the haunted show responsibility and justice t­ oward the ghost—­ that is, the other, the marginalized, or the silenced. As he eloquently said, “contrary to what we might believe, the experience of ghosts is not tied to a bygone historical period, like the landscape of Scottish manors, e­ tc., but on the contrary, is accentuated, accelerated by modern technologies like film, tele­vi­sion, the telephone” (Derrida [1994], quoted in Payne and Lewis 1989, 61)—­and, may I add, metrics. In 1911, to offer but one illustrative example, the Danish author Emma Gad, in a feature published in the national newspaper Politiken, described how she sat down next to the flowering roses and elderberries in her home garden, excited to read her newly received book with the intriguing title The Real Danger in the Dangerous Age. She recounts, Just a few pages into the book, I started to feel dizzy—­the summer dis­appeared. The sweet scent of roses and the sound of hummingbirds w ­ ere no longer. A cold and ugly haze arose from the pages of the book and darkened the sun. It gradually turned into an enormous grey phantom, which kept staring at me with its kind dark eyes, and she elaborates, “it is cancer, which is the real danger.” (Gad 1911)

Interestingly, Gad then noted that it was not the word “cancer” and its association with “the irreversible” but rather “the dry numbers” that summoned the grey phantom, by pointing out the high mortality rate among the wealthy class. Whereas metrics in the early twentieth ­century haunted Emma Gad, cancer metrics ­today and the excessive circulation of numbers ascertain the liveliness of the ghost of cancer not merely among the public but also among health professionals. Statistics may improve cancer control, but they also, as pointed out by Lochlann Jain, add to “the ghosting of real lives” (2010, 90). Like the other silenced

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dead in history, statistics return to unsettle the living, one of them being Nanette. In the Danish welfare society, the health care system is or­ga­nized around a gatekeeping princi­ple, which serves to control the allocation of health benefits and ensure cost-­effectiveness while caring equally for the pre­sent and the ­future of all citizens. It is the role of the GPs to function as the gatekeepers, and I argue that the task of gatekeeping reveals a tension pre­sent in the ethic duty of doctoring: the GP must be a good welfare state actor and care for the potential f­ utures, costs, and effectiveness of the welfare society while at the same time providing care for individuals suffering in the pre­sent. In this tension, I suggest, the ghost of cancer surfaces.

The Setting and the Study: Improving GP “Readiness to Investigate” In Denmark, all ­people are listed with a general practice clinic (GP clinic), and if they feel sick and need to consult a doctor, the GP clinic is their first point of entry into the health care system. Although the con­temporary welfare state portrays equality as one of its core values, its neoliberal turn introduced values such as equality in biological health and survival, individual responsibility, and productivity (Bruun 2018). Some GPs embrace this neoliberal version of equality; ­others consider ­these ideas to be at odds with their duty as doctors to care for the suffering of individuals and for the vulnerable and poor. ­There are approximately 3,500 ­family doctors in Denmark, and, on average, they diagnose cancer in six to eight patients ­every year while seeing patients ­every day with a range of bodily sensations and changes that are interchangeable with the so-­called cancer alarm symptoms (Hjertholm et al. 2014; Andersen, this volume). Much of the discussion among cancer epidemiologists regarding the puzzling statistical findings that Danish (and British) citizens have a poorer cancer prognosis than citizens from other countries centers on the gatekeeper role. A common hypothesis in the epidemiological cancer lit­er­a­ture is that the lower cancer survival rates could be partly rooted in GPs having too high a risk threshold for selecting patients for examination (Hamilton 2010). Also, following the implementation of cancer patient pathways in Denmark, the national media, as described by Marie Louise Tørring (this volume), abounded with stories of GPs having failed to spot cancer in time. Subsequently, a public and po­liti­cal critique of GPs for delaying cancer diagnosis arose. In 2011, several Danish newspapers quoted a survey conducted by the Danish Cancer Society that showed more than ­every tenth cancer patient had experienced her or his concerns not being taken seriously the first time they consulted a GP about symptoms l­ater ascribed to cancer. Commenting on the survey, the director of the Danish Cancer Society at the time, Leif Vestergaard Pedersen, declared, “GPs need a knowledge brush up” and need to be “better informed of which symptoms they ­ought to look for” (Ritzau Staff 2011). In 2015, updates from the Danish Agency for Patient Complaints, which are frequently mentioned



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by the Danish media (e.g., see Pedersen 2015), pointed out that the number of patients receiving compensation for a missed cancer diagnosis or delayed treatment between 2004 and 2014 had multiplied by five and that a fourth of them had been missed at the general practice level. In the public media, the Danish Cancer Society subsequently remarked that this survey showed that GPs ­ought to be better at interpreting ­whether a patient might be suffering from cancer. Hence, over the last de­cade, as in other parts of the Danish health sector, general practices have been subject to a range of regulatory initiatives aimed at ensuring equal health and effectiveness in medical work. Following the implementation of cancer patient pathways, symptom-­based guidelines for urgent referral ­were introduced in general practice (Ingeman 2015) to govern and direct the GPs’ clinical task of distinguishing between normal and potentially cancerous signs in order to ensure early detection and treatment of cancer (Aarhus, this volume). Also, GPs ­were summoned to cancer diagnosis training courses, which advised them to drastically lower their risk thresholds with a view to improving their readiness to examine (Toftegaard et al. 2016). At the training courses, GPs ­were encouraged to refer patients onward for further examination if they judged they had a 3 to 5 ­percent risk of cancer. As I ­will show in this chapter, this advice has proved to be difficult to follow. Although the turn t­ oward standards and evidence-­based medicine may improve efficiency, consistency, and evidence-­based decision-­making, it may, as scholars (Nettleton, Burrows, and Watt 2008) often have shown, erode or enhance the more subjective, tacit, experiential, and indeterminate aspects of clinical reasoning. In order to understand why the strict regulation of Danish GPs’ cancer diagnostic practices has not expelled the elusive and unsettling but instead brought it into being, we need to understand how standards are enacted in the context of general practice. This chapter takes its point of departure from my eleven months of ethnographic fieldwork at four dif­fer­ent general practice clinics located on the island of Zealand in Denmark. During this fieldwork, most of my observations centered on the clinical encounter between GPs and patients. However, I also spent several weeks observing the work of other staff at the clinic and participating in clinic meetings and informal talks during lunch and coffee breaks. I conducted in-­depth interviews with all the involved GPs and most of the clinical staff. Inspired by the methodology of visual and sensorial anthropology (Heath and Hindmarsch 2002; Pink 2007), I made video recordings of more than thirty consultations in order to access the more sensorial and nonverbal aspects of the clinical encounter.

The Specter’s Signals of Cancer It is the autumn of 2017 and I am observing Ole’s daily work at his solo clinic situated in a small Danish town on the island of Zealand. Unlike Nanette (mentioned ­earlier), Ole has never used the meta­phor of the ghost to describe the absent presence of cancer, but cancer frequently surfaces as a ghostly potentiality during his

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consultations. This has also been the case on this sunny morning in August when Vera, a seventy-­three-­year-­old w ­ oman, enters Ole’s clinic with a worried look on her face. Having seated herself in front of Ole, Vera says, Do you remember you checked ­those spots [moles] on my back? You said that they looked benign, but you said that if it would make me feel better, I could have them checked at the dermatologist. I have to tell you, it is a good t­ hing I went b­ ecause ­there was something bad [skin cancer] in them. It was difficult to see. . . . ​At first, he [the dermatologist] did not think it was anything e­ ither. He said they looked benign on the surface. [. . .] So now I have become frightened, and I cannot remember, and I am embarrassed about that, but I cannot remember if I have showed you the spot I have ­behind my ear?

Before he examines Vera, Ole looks through her papers from the dermatologist and tells her in a comforting tone of voice, “You have what we call sun-­damaged skin. It is very common and not dangerous. So I do not know why they call it cancer.” He then says that the spots the dermatologist had removed w ­ ere not malignant [fredelig kræft] and not dangerous malign melanoma. Ole then examines the mole ­behind Vera’s ear; he and tells her that it looks benign and she should not worry about it, but she can just have it checked next time she sees her dermatologist. “So I can sleep peacefully at night?” Vera asks in a relieved tone. Ole waits a second and then answers, “Well, yes.” He elaborates: By looking at a mole, I can only make an estimation. We can only know for sure what is inside if it is removed and looked at through a microscope. The reason why we are examining so many moles is to find the few that are malign. But in my twenty years of working ­here, I have only found two cases of malign melanoma, and I have examined hundreds of moles that w ­ ere not malign. Th ­ ere is no reason to hurry. Just let the dermatologist have a look at it the next time you see him.

Vera thanks Ole and says that she feels relieved and w ­ ill certainly consult her dermatologist about the mole. ­After Vera has left, Ole explains that considering the look of the mole, it is highly unlikely that it is malign, but he advised her to see the dermatologist anyway: She was very anxious, and she has a presumption that life is dangerous, and that is in a way true. And she is not seriously ill, but she is getting older. . . . ​Back in the day, the priests talked to p­ eople about life and death. I miss that. And now she is lying awake at night worried about sun-­damaged skin. But now I know what worries her, and that is helpful, ­because then we can talk about it.

Cancer is not pre­sent as a ghostly potentiality in all consultations. ­After Vera left, the ghost of cancer appeared to have left the consultation room as well for a



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while. During the next consultations, t­ here are patients with athlete’s foot, a cold and a cough, and depression and stress, as well as patients who need a checkup on medi­cation. Just before lunch, Ole tells me that the next patient is a man in his early fifties named Søren, which ­will prob­ably be a quick consultation—­just a checkup on back pain ­after physiotherapy. Søren enters the consultation room and greets me with a firm handshake. He then says to Ole, “We agreed that I should come t­ oday to have a checkup on my back pain, but what I ­really want to talk about is prostate cancer.” He explains that lately he has been worried about w ­ hether his back pain might be caused by prostate cancer; during a recent dinner party he happened to speak with a doctor who told him that in young men back pain could be the first sign of prostate cancer. Søren explains that both his f­ ather and older b­ rother developed prostate cancer in their eighties, and he asks Ole, “I won­der w ­ hether I ­ought to check up on that.” Ole explains to him it is highly unlikely that prostate cancer is causing Søren’s pain: his pain comes and goes whereas the pain caused by cancer usually is a per­ sis­tent pain. He says, “It is of course pos­si­ble to take a PSA [prostate-­specific antigen] blood test, but it is an uncertain test and not suitable for detecting serious diseases.” He adds that as men get older, they often develop prostate cancer cells, which can be identified through the test but w ­ ill often not cause any illness. The prob­lem with the test, Ole explains, is that it cannot distinguish between ­those who ­will and t­hose who w ­ ill not develop malign prostate cancer. He then tells Søren that he w ­ ill order an X-­ray to check up on his back pain, but that he should not decide t­ oday ­whether he wants a PSA test. Søren should go home and think about it ­because it is a big decision. The cases are examples of how Ole’s consultations, similar to ­those of the other Danish GPs I followed, sometimes turn the clinic into a kind of haunted ­house, where that which is absent or invisible (the spot and back pain that did not look like signs of cancer) becomes a latent potentiality (what if it is cancer?). As Geoffrey Bennington and Jacques Derrida wrote in 1993, “the f­uture belongs to ghosts, and modern image technology, cinema, telecommunications, e­ tc. are only increasing the power of ghosts” (349). Con­temporary biotechnological pro­gress has made it pos­si­ ble to look ever deeper into the hidden organic interior of the h­ uman body and make vis­i­ble what was long invisible to the medical gaze, such as cancer in its very early stages and cancer risks reflected in numerical expressions of the body. At the clinic, the promises of new biotechnologies to detect cancer early have not obliterated cancer in its ghostly form; rather they have called it forth, reminding patients and doctors that cancer may be pre­sent even though it is imperceptible to the ordinary h­ uman sensorium and only perceptible through the aid of technology. The challenge to the GP is that even though new biotechnologies make the invisible vis­i­ble, as they may indeed reveal cancer hidden b­ ehind a seemingly indistinct bodily sign, they also elicit new invisibilities, such as t­hose elicited through a prostate blood test. L ­ ater, while Ole is discussing Søren and the prostate blood test, he tells me,

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I have just been to this medical course where we learned a lot about the statistics of cancer screening, ­etc. The prob­lem is that in my daily practice I cannot use numbers, statistics for anything. [. . .] What should I tell the wife who wants me to refer her husband for cancer examinations? Should I tell her that statistically it is unlikely that his symptoms are due to cancer? If ­there is the slightest risk that it may be cancer, numbers ­will not comfort her. [. . .] Also, I cannot bear to miss a cancer diagnosis. If I miss more than one cancer diagnosis a year, my patients may lose their trust in me. What we need is not to learn more about the statistics. What we need is to learn more about clinical sense. Our everyday work is not about statistics. It is more a m ­ atter of sensations and hunches [fornemmelser].

As Ole’s words indicate, the logic of urgency characterizes the con­temporary politics of early detection—­namely, the necessity to act without delay to combat potential fatal cancerous ­futures—­and elicits a ghostly temporality, what Derrida (1994) termed a “disjointed time,” where the past and the future-­to-­come haunt the pre­sent. Amid this ghostly message on the ethical duty of doctoring, Ole regards a clinical decision based on numbers as not taking responsibility for a worried wife; he considers it a just action to refer her husband for further examination in order to provide them comfort, which is not a decision based on probability. The promises of new biotechnologies to make the invisible vis­i­ble summon new invisibilities at the clinic, but the logic of urgency captures current clinical encounters in a spectral temporality. This brings the past and the ­future into the pre­sent—­namely, into the patients’ or GPs’ lingering thoughts of “what if ” something that appears benign in the pre­sent turns out, as was the case with Søren’s ­father and ­brother, to be malign in the f­uture. To Vera the spot b­ ehind her ear becomes, at least according to Ole, a reminder that Vera is getting older and inevitably is approaching death. For Ole to miss a cancer diagnosis is not simply an inevitable part of medical statistics; it would have catastrophic consequences for the ­future of a patient, her or his spouse, their ­children, and Ole’s own ­future should his patients lose trust in him. Clinical reasoning is, according to Ole, not so much a ­matter of statistics but of sensations.

Living with Ghosts When Nanette describes the difficulty of disproving a cancer suspicion, her older colleague Peter, a forty-­one-­year-­old GP, nods and says, Yes, it is difficult with cancer. ­Because we have a lot of patients who are worried about illness. They come to see me each time they sense even the slightest ­thing. And . . . ​it can be hard. In such cases, it helps when you know the patients. I know that some patients are easily worried and that it is prob­ably nothing. In such cases, you must trust your gut feeling. Nevertheless, worried patients also get ill, so you must also be alert, make sure to do an examination, and use your gut feeling. . . . ​



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Maybe the patient looks more greyish or has become thinner. You must pay attention to ­these ­things. I am sure that gut feeling is of importance.

As Peter’s words reveal, the notion of “gut feeling” refers to the GPs’ ability, sensibility, and knowledge of par­tic­ul­ar patients when making the necessary distinction between the potentially well and the potentially sick. ­Every day, GPs are confronted with the ghost of cancer potentialities—­namely, ­whether an indistinct sign, such as a mole or a back pain, is to be perceived as normal or potentially malign. The appearance of the ghostly, as argued by Derrida, confronts ­humans with an ethical choice: to banish or to welcome and “encounter what is strange, unheard, other, about the ghost” (Davis 2005, 378). According to Derrida, the ethical injunction is to “live with ghosts” (Derrida 1994, xviii)—­that is, to allow otherness to disrupt our rigid categorizations (presence/absence, visible/invisible, sensible/insensible), to allow a sensitivity to meanings that moves beyond our ordinary way of thinking. I suggest that what Danish GPs mean when they talk about gut feeling is akin to a mode of living with ghosts, precisely ­because the task of GPs t­ oday is to deal with the imaginative and with that which configures in the liminal space between the vis­i­ble and invisible and the past, pre­sent, and ­future. While I am d­ oing fieldwork at the partnership clinic of Niels and Gitte, I ask Niels one day ­whether he also feels that cancer has become the ghost in the consultation. He laughs at my question, and then he answers, I am not afraid of ghosts; I have been trained to talk about ghosts . . . ​we are trained to ask patients about their fears. [. . .] The patient who was h­ ere ­earlier, some years ago she had a cancer tumor in her intestine, [. . .] and she has under­gone a radical treatment, and for the last eight years, she has been ­doing well. But then she comes to me with some back pain which she feels is somehow dif­fer­ent from normal back pain. And so I ask about her fears, and of course she is afraid of cancer, but then we can talk about it. It is out in the open. And I guess she must be further examined, [. . .] but some p­ eople are afraid just b­ ecause of a tiny abnormality in a blood test, and it may not be something they need to worry about. But the imagination of ­people—we need to get it into the open, to talk about it.

This is an example of how the predicament of being a GP in a con­temporary welfare state is not to banish but to care for its ghosts, as well as being attentive to their influence on the GPs’ own professional life. Often this expresses itself as the fear of missing a cancer diagnosis, which in subtle ways haunted most of the GPs I followed. Several of them described gut feeling as a sensation that, if left unattended, would continue to torment them. As Ole says, It is gut feeling that keeps us awake at night. You know, sometimes I cannot sleep ­because I cannot get rid of the feeling that something did not quite fit into the

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overall picture. But when I get this feeling, I know that t­ here is something I need to follow up on.

The words of Ole capture the way “gut feeling,” as a sense of alarm, shares similarities with the perception of the ghostly and contains the dynamics of haunting. According to Gregory Delaplace (2014, 65), perceptions of the ghostly are sensations that abruptly shake the implicit certainty of perceptual faith that the world is what it seems. Such perceptions trigger the dynamics of haunting, which, according to Avery Gordon (2008), consist in unsettling moments when blind spots come into view, prompting a conviction of “something to be done” (183). However, to sense what is to be done, as we ­will see, is a skill cultivated temporally and through situated relations. The GPs’ reflections reveal how the absence of clinical signs of a serious illness is not always considered enough to clinically establish that a patient is unlikely to suffer from a serious condition. On the contrary, GPs tend to turn ­toward their gut—­that is, a more temporal and embodied reading of their patients—to reassure themselves of the absence of any other subtle sign that could be an indication of the presence of a serious illness. This is the situation when GPs encounter the so-­called worried-­well patients, who confront the GP with the ghost of cancer despite the absence of alarm symptoms (the cancer may be hidden). ­Here it helps the GPs “to know their patients,” as they say. We are dealing with a mode of reasoning not based on an interpretation of the patient but on resonance with the patient, developed through the temporal flow of shared experiences between a specific GP and a specific patient. Cases I have discussed illustrate how the promises of the welfare state and its ghostly workings in patients’ bodies and lives, at the clinics, and in the GPs’ daily task of gatekeeping have transformed the task of spotting a diseased patient among the many healthy ones into a burdensome task. They also show how GPs feel required to carry out the elusive task of gatekeeping and guarding welfare—to protect the welfare state’s efficiency and prosperity in its pre­sent and f­uture, but also to ensure that individual patients do not have to go through unnecessary treatment.

Turning to the Guts Peter is not the only GP I met who considers listening to your gut feeling a means to distinguish the potentially ill from the potentially well. ­Today, prominent health promoters in Denmark and the United Kingdom advise GPs “to trust their gut feeling, if it says cancer” (Kristensen et al. 2022). This piece of advice is backed up by recent clinical studies conducted by GPs in Denmark and elsewhere in the Global North that suggest a GP’s gut feeling may be more indicative of an under­ lying cancer disease than the symptoms a given person pre­sents at the clinic (Donker et al. 2016; Ingeman 2015).



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A national policy of early diagnosis where cancer diagnostic practices are standardized along the lines of the science of medicine (symptom-­based guidelines) seems somehow ironically to mark a turn ­toward more embodied and situated modes of knowing at the clinic. During my fieldwork, I observed several medical students during their general practice internships. Often they had heard or read that the GP’s gut feeling about cancer is a good predictor of cancer and hence should be trusted. When I asked them w ­ hether they had experienced a gut feeling about cancer, they usually said that they had not, which they ascribed to their “­limited clinical experience” and “lack of background knowledge of the patients.” This did not mean that they seldom suspected cancer. On the contrary, cancer suspicion was omnipresent in many of their consultations precisely ­because they ­were trained at medical school to spot the cancer potentiality of the apparently normal. I met Karina, a medical student in her twenties, during her internship and my fieldwork at the solo practice of Ole, a GP in his early sixties. Karina explains, Before I came ­here, I worked at a hospital where the patients of course are ill. It is very dif­fer­ent from general practice. At the hospital, you know that the patients are ill, so your job is to determine the character or type of illness. H ­ ere most patients are not seriously ill; they just need to go home and relax with Netflix and a cup of chamomile tea. Often you have to wait and see and tell them to come back if it gets worse. You ­really have to get used to this mindset. For a long time, I was like, “Noooo, this can be this or that illness.” [. . .] But when I am in doubt—­and I often am ­because I do not have much experience and I do not know the patients like Ole does—­I often call him. . . . ​Like this morning, I called him twice, [to Ole:] do you remember? I was not sure about that mole, I thought it looked kind of strange, but Ole could see that it was not anything dangerous . . . ​and then ­there was this ­woman, she was r­ eally worried b­ ecause she had felt ill for a c­ ouple of weeks and then I got ner­vous too. I asked about other symptoms, and she did not have any. Still, she was very ner­vous, but Ole knows her; she is apparently a ner­vous kind of patient. [. . .] I am very cautious b­ ecause it is impor­tant not to miss a serious disease. Ole is not afraid to make a decision, but he has, of course, much more experience, and he is a very good doctor.

Karina’s story reveals how her training in attending to the potentiality of cancer makes cancer pre­sent in many of her consultations: Karina is attuned to the cancer potentiality of the numerous and often vague bodily signs categorized as symptoms of cancer in con­temporary guidelines. However, the challenge to medical students like Karina is that the potential signs of cancer may be similar to the potential signs of the normal body, as they signify meanings related to both the everyday and the cancerous body (Andersen, this volume). Karina’s consultations frequently take place as what we, drawing on Gordon (2008, 17), may term “ghostly moments,” where the overwhelming visibility of a phenomenon conjures

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up a type of invisibility, often leaving Karina with a nagging worry about “What did I see?” However, as Karina says, in general practice “most patients are not seriously ill,” and, she elaborates, “You cannot refer every­one, just ­because you are afraid to miss a cancer diagnosis. You need to carry some uncertainty and not worry about the patients for no reason.” Karina says that Ole has told her that, in general practice, continuity of care and observation is pivotal in distinguishing the ill from the well. Ole guides Karina regularly in spotting changes or lack of change in a patient’s appearance or be­hav­ ior over time. He often points out that he is not worried about a par­tic­u­lar patient being seriously ill b­ ecause the patient has been thoroughly examined, has no new symptoms, and has been worried for years, or that he is worried about a par­tic­ul­ ar patient ­because the patient’s appearance or be­hav­ior has somehow changed. Karina explains that Ole has taught her to observe: You need to be observant already when you see them in the waiting room. Do they sit in a drowsy way, or do they sit upright reading a magazine? Do they enter the consultation room panting or talkative and smiling? What is their color like? Is it reddish, as in the case of infection or fever, or is it pale, as in the case of tiredness or anemia? [. . .] It is of course a ­matter of diagnostics but also a ­matter of . . . ​How can I explain it? . . . ​[Of] being patient-­centered, being observant on what kind of person we are dealing with, and what her worries are.

Then Karina pauses and says, But . . . ​in the case of cancer, it is difficult ­because you have to identify it through ­these red flags . . . ​something that does not quite fit into the overall picture. It is about being able to read the patients, and, of course, I do not have this ability ­because I do not know the patients the way Ole does. For me it is more a ­matter of what the symptoms are and how they fit together with the patients’ age, medical history, and other symptoms, and ­whether ­there is something that does not fit into the overall picture.

As Karina indicates, medical students through con­temporary forms of cancer control are confronted with the necessity of cultivating embodied, situated, and responsible modes of attentiveness to individual patients’ lives and bodies in order to responsibly distinguish the potentially well patients from the potentially ill patients. Whereas the scholarly turn t­oward gut feeling is an attempt to (re)legitimize GPs’ gut feelings as a diagnostic tool to make the potential cancerous f­ utures vis­i­ ble, the turn ­toward gut feeling in the clinic is also a means to live with the ghost of cancer (cancer potentialities), which is increasingly considered to haunt the consultation. The (re)invigoration of the notion of gut feeling in the field of f­amily medicine reveals how modernity and science have summoned ghostly forms that



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cannot entirely be controlled through the disembodied forms of knowledge offered by science. Primary care research tends to portray gut feeling as if it w ­ ere an “it” that is elicited somehow automatically, making the main challenge of GPs w ­ hether to discount or to trust their gut feelings. In a portrayal echoing the logic of the physician, Erik Stolper and colleagues (2011) define gut feeling as an affect heuristic—­ namely, a m ­ ental short cut, where the emotional impacts of GPs’ prior experiences are stored in the brain and somehow automatically elicit positive or negative effects (gut feelings) when confronted with uncertain diagnostic situations. The limit of this perspective is that it presupposes that experience mediates between the world and the mind and ignores that ­these are not separate in the first place. Experience is, as argued by Tim Ingold (2000), “intrinsic to the ongoing pro­ cess of being alive to the world” (99); that is, a person’s total sensory involvement in a par­tic­u­lar environment. I suggest that gut feelings, as all kinds of perceptual skills and sensuous knowledge, are situated practices ­shaped by and brought into being through the GP’s involvement in specific tasks and working practices in a par­tic­ul­ar social and po­liti­cal environment (Grasseni 2010; Ingold 2000). The practical training and daily work of professionals in a certain taskscape amount to an education of attention (Ingold 2000), wherein one learns to spot and respond to subtle signs in the environment (cf. Kristensen et al. 2022).

The Ghostly Workings of the Welfare State It may seem odd to take Nanette’s picture of the ghost of cancer seriously as a meta­phor for what cancer is or has become in the context of a con­temporary Danish general practice where guidelines and standardization predominate. W ­ ere ghosts not exorcized from Western medicine long ago? you may ask. However, the value of the ghost as an analytical tool is that it enables us to re-­engage with what has often been overlooked and to move beyond established distinctions between what is known and what remains in the dark. As Derrida suggests, “haunting belongs to the structure of ­every hegemony” (1994, 46): politics is haunted by ­those phenomena it seeks to eliminate but which return as ghosts. Derrida shows how the cele­bration of the death of Marxism in the cap­it­al­ist world, which followed the collapse of Communism, summoned the ghost of Marxism: that is, the fear of “that which could come or come back; in the ­future” (1994, 63). As the collapse of Communism meant that Marxism was no longer vis­ i­ble, at least through its conventional signs, the Western establishment attempted to uncover and fight any po­liti­cal initiative that could be a sign of the arousal of a new Marxism (48). Inspired by Derrida, I suggest that while the po­liti­cal and biomedical attempt in Denmark to ensure timely detection of cancer has succeeded in increasing cancer survival rates, the emphasis on early signs of cancer summons cancer in a ghostly form, as an absent presence.

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The ghosts of cancer are enlivened by the memories, imaginaries, and hopes of the past and con­temporary welfare state. During the last two de­cades, the significantly low national cancer survival rates came to signify the Danish welfare state’s failure to protect the lives of its citizens. This gave rise to the con­temporary biopolitics on cancer and its vision to detect disease early in order to combat potential cancerous ­futures. The welfare state has indeed shown that longevity in the ­future is cultivated in the pre­sent, which is evident in the rising number of “cancer survivors.” Subsequently, new hopes and expectations have arisen, putting GPs in the predicament of needing to spot the cancer potentiality of faraway ­futures to ensure the longevity of the welfare state. The predicament of spotting what is not yet ­there but might come in the f­uture is to summon the ghosts of the welfare state’s dream of immortality. The biology of cancer permits the ghostly form of cancer: cancer may undertake the s­ ilent form of an absent presence, where familiar signs of cancer, such as bleeding or lumps, are absent though cancer is pre­sent in the organic interior of a patient’s body. Up through the twentieth c­ entury, the medical semiotics of cancer kept the ghost of cancer—at least partly—at bay; it provided GPs in Denmark, as elsewhere, with a relatively stable list of what they should—­and hence also should not—­ consider dangerous signs of cancer. In Denmark, and beyond, the number of bodily signs classified as alarm or nonspecific symptoms of cancer has increased steadily since the implementation of cancer patient pathways (Andersen, this volume). ­Today, early signs of cancer are the focus of clinical guidelines for urgent referral to the pathways, and national cancer campaigns instruct GPs and the public to be aware of, and react early on, the cancer potentiality of increasingly more vague bodily signs (Andersen 2017; Offersen et al. 2016). The national politics of cancer has, as described by Andersen (this volume), sparked an expansion of the medical signs of cancer, unsettling the former distinctions between signs of the everyday normal body and signs of the potentially cancerous body. This has given rise to a kind of “embodied subjunctivity” characterized by the potential or the ever-­present “what if” brought on by our con­temporary desire to alleviate or prevent disease (Andersen 2017). I suggest that the con­temporary biopolitics of early diagnosis summons cancer in its ghostly form ­because it makes “that which appears absent” become “a seething presence” (Gordon 2008, 115) in the consultation.

Concluding Discussion: From Fluid to Ghostly Diagnostics The politics of early diagnosis reminds GPs like Nanette that “anyone can hide a cancer” b­ ecause cancer “no longer [has] the face by which one was accustomed to identify it and put it down” (Derrida 1994, 62). I have explicated, we need to see how the emergence of new cancer potentialities at the clinic has sparked a scholarly quest within the field of general medicine to uncover, revalidate, and give preference to the diagnostic value of embodied and situated modes of clinical rea-



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soning (often named gut feeling) over, for instance, statistical styles of reasoning and increased use of technological/technocratic/disenchanted approaches to detecting cancer. Sigmund Freud famously portrayed the uncanny or ghostly as an eerie feeling produced when the familiar becomes strange and unfamiliar, and when something that we regard as imaginary appears before us in real­ity ([1919] 1953, 44). In Derrida’s work, the emergence of the ghost or specter signals that “time is out of joint” or, in the words of Martin Hägglund (quoted in Fisher 2014, 18), that pre­ sent time is haunted by “what is no longer [remembered pasts] or not yet [pos­si­ ble ­futures].” In this chapter, we have seen how the attempts of a con­temporary biopolitics of early diagnosis to standardize the cancer diagnostic practices of GPs according to the princi­ples of new epidemiological science (symptom lists in guidelines) somehow ironically summon cancer in its ghostly form—­namely, an absent pre­sent—­unmaking the pre­sent time of the consultation. The task of the GPs is no longer merely to deal with what is in the pre­sent but with what might be part of yet unknown ­futures. The expansion of the medical semiotics of cancer (Andersen, this volume) means that almost any cancer identified at a late stage may be conceptualized as a missed cancer, ­because the ethics of the con­temporary politics of early diagnosis inform medical professionals and patients of the risks of not acting on the cancer potentiality of the apparently normal. Not surprisingly, a new public and po­liti­cal critique accusing GPs of delaying cancer diagnosis emerged ­after the implementation of cancer patient pathways. I suggest that the effort of GPs to reinvigorate gut feeling as a valid diagnostic tool in cancer diagnosis is a counterreaction to the recent po­liti­cal and public accusations that GPs are delaying cancer diagnosis. In what I have termed the haunted h­ ouse of the clinic—­playing on the ghostly rhe­toric of Derrida—­the major challenge of the GP is, however, not to make the invisible cancer potentialities of ­human bodies vis­i­ble. Cancer awareness campaigns and clinical guidelines already perform the somehow spectral work of making that which appears invisible or absent become a seething visibility or presence at the clinic. The turn ­toward guidelines in cancer diagnostic practices has, somewhat ironically, sparked a turn ­toward gut feeling, understood as a more embodied and situated mode of reading patients’ bodies in order to make not only the potentially ill body but also the potentially well body vis­i­ble in the consultation. I suggest that gut feeling is a situated practice honed through the practices of patient-­centeredness and continuity of care, which gradually attunes the GP’s sensorium to spot subtle signs that are vital in order to distinguish a potentially threatening ­future from a potentially nonthreatening ­future. Derrida foresaw that the f­uture belongs to ghosts and that the ethical injunction of our con­temporary world is to live with ghosts. Whereas Max Weber ([1919] 1922) prophesized that the rise of modern science would mark the disenchantment of the world, the con­temporary pro­gress of medical science appears to

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reenchant the world and confront h­ umans with the premise of life itself being “dangerous” and inevitably ending with death, which even science cannot combat. To survive as a GP, you need to be able to bear uncertainty, the GPs I observed told me many times. It may be that to bear uncertainty is akin to living with ghosts, and it may be that in the clinic gut feelings serve as a diagnostic tool that enables doctors to live with ­those ghosts in a world enchanted by the prophecy of the certainty of science.

references Andersen, Rikke Sand. 2017. “Directing the Senses in the Con­temporary Orientations to Cancer Disease Control: Debating Symptom Research.” Tidsskrift for Forskning i Sygdom og Samfund 14 (26): 145–171. https://­doi​.o­ rg​/­10​.7­ 146​/­tfss​.v­ 14i26​.2­ 6282. Bennington, Geoffrey, and Jacques Derrida. 1993. Jacques Derrida. Chicago: University of Chicago Press. Bruun, Maja Hojer. 2018. “Social Imaginaries and Egalitarian Practices in the Era of Neoliberalization.” In Egalitarianism in Scandinavia: Historical and Con­temporary Perspective, edited by Synnøve Bendixsen, Mary B. Bringslid, and Halvard Vike, 135–156. Bergen, Norway: University of Bergen. https://­doi​.­org​/­10​.­1007​/­978​-­3​-­319​-­59791​-­1​_­6. Danish Agency for Patient Complaints. 2012. “Stigningen i anmeldelser til og erstatningstilkendelser fra Patientforsikringen 2006–2011—­analyse af baggrunden og prognose for 2012–2015.” Copenhagen: Danish Agency for Patient Complaints. Danish Cancer Society. 2011. “Kræftens Bekæmpelses Barometerundersøgelse, 2011 Kræftpatienters oplevelser med sundhedsvæsenet gennem udredning og behandling.” Copenhagen: Danish Cancer Society. https://­www​.­cancer​.­dk​/­dyn​/­resources​/­File​/­file​/­3​/­6553​/­1502882293​/­kraeftens​ _­bekaempelses​_­barometerundersoegelse​_­2011​.­pdf. Davis, Colin. 2005. “Hauntology, Spectres and Phantoms.” French Studies 59 (3): 373–379. https://­doi​.o­ rg​/­10​.­1093​/­fs​/­kni143. Delaplace Gregory. 2014. “What the Invisible Looks Like: Ghosts, Perceptual Faith, and Mongolian Regimes of Communication.” In The Social Life of Spirits, edited by Ruy Blanes and Diana Espírito Santo, 52–68. Chicago: University of Chicago Press. Derrida, Jacques. 1994. Spectres of Marx: In the State of the Debt, the Work of Mourning, and the New International. New York: Routledge. Donker, Gé, Eva Wierma, Lucas van der Hoek, and Marianne Heins. 2016. “Determinants of General Practitioner’s Cancer Related Gut Feelings—­A Prospective Cohort Study.” BMJ Open 6 (9): e012511. http://­doi​.­org​/­10​.­1136​/­bmjopen​-­2016​-­012511. Fisher, Mark. 2014. Ghosts of My Life: Writings on Depression, Hauntology and Lost ­Futures. Winchester, United Kingdom: Zero Books. Freud, Sigmund. (1919) 1953. “The Uncanny.” In The Standard Edition of the Complete Psychological Works of Sigmund Freud. Translated and edited by James Strachey, vol. 14, 219–252. London: Hogarth Press. Gad, Emma. 1911. ”Kronik: Det graa spøgelse. Den virkelige fare [The Grey Ghost. The Real Danger].” Politiken, July 9, 1911. Gordon, Avery. 2008. Ghostly ­Matters: Haunting and the So­cio­log­i­cal Imagination. Minnesota: University of Minnesota Press. Grasseni, Christina. 2010. “Introduction.” In Skilled Visions: Between Apprenticeship and Standards, edited by Christina Grasseni, 1–19. New York: Berghahn Books. Hamilton, William. 2010. “Cancer Diagnosis in Primary Care.” British Journal of General Practice 60 (571): 121–128. https://­doi​.­org​/­10​.3­ 399​/­bjgp10X483175.



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Heath, Christian, and Jon Hindmarsch. 2002. “Analyzing Interaction: Video, Ethnography and Situated Conduct.” In Qualitative Research in Action, edited by Tim May, 99–121. London: SAGE. Hjertholm, Peter, Grete Moth, Mads Lind Ingeman, and Peter Vedsted. 2014. “Predictive Values of GPs’ Suspicion of Serious Disease: A Population-­Based Follow-­Up Study.” British Journal of General Practice 64 (623): e346–­e353. https://­doi​.­org​/­10​.­3399​/­bjgp14X680125. Ingeman, Mads Lind. 2015. “Non-­specific Symptoms and Signs of Cancer in General Practice—­ Access to Investigation and Diagnostic Centres.” PhD diss., Faculty of Health, Aarhus University. Ingold, Tim. 2000. The Perception of the Environment: Essays on Livelihood, Dwelling and Skill. New York: Routledge. Jain, S. Lochlann. 2010. “The Mortality Effect: Counting the Dead in the Cancer Trial.” Public Culture 22 (1): 89–117. https://­doi​.o­ rg​/­10​.1­ 215​/­08992363​-­2009​-­017. Kristensen, Benedikte Møller, Rikke Sand Andersen, Brian Nicholson, Sue Ziebland, and Claire Friedman. 2022. “Cultivating Doctors’ Gut Feeling: Experience, Temporality and Politics of Gut Feelings in F ­ amily Medicine.” Culture, Psychiatry and Medicine 46: 564–581. https://­doi​.o­ rg​ /­10​.­1007​/­s11013​-­021​-­09736​-­3. Nettleton, Sarah, Roger Burrows, and Ian Watt. 2008. “Regulating Medical Bodies? The Consequences of the ‘Modernisation’ of the NHS and the Disembodiment of Clinical Knowledge.” Sociology of Health and Illness 30 (3): 333–348. https://­doi​.­org​/­10​.­1111​/­j​.1­ 467​-­9566​ .­2007​.0­ 1057​.­x. Offersen, Sara Marie Hebsgaard, Mette Bech Risør, Peter Vedsted, and Rikke Sand Andersen. 2016. “Am I Fine? Exploring Everyday Life Ambiguities and Potentialities of Embodied Sensations in a Danish Middle-­Class Community.” Medicine Anthropology Theory 3 (3): Article 4705. https://­doi​.­org​/­10​.­17157​/­mat​.­3.​ ­3​.­392. Payne, Andrew, and Mark Lewis, 1989. “The Ghost Dance: An Interview with Jacques Derrida.” Public, no. 2: 60–73. https://­public​.­journals​.­yorku​.­ca​/­index​.­php​/­public​/­article​/­view​/­29785. Pedersen, Flemming Steen. 2015. “Overset kræft giver kæmpeerstatning [Overlooked Cancer Grants ­Giant Compensation].” Berlingske.dk, May 11, 2015. Pink, Sara. 2007. ­Doing Visual Ethnography. 2nd ed. London: SAGE. Risør, Mette Bech, and Nina Nissen. “Configurations of Diagnostic Pro­cesses and Practices: An Introduction.” In Diagnostic Fluidity: Working with Uncertainty and Mutability, edited by Mette Bech Risør and Nina Nissen, 11–32. Tarragona, Spain: Editorial Publicacions URV. http://­doi​.­org​/­10​.­17345​/­9788484246633. Ritzau Staff. 2011. “Læger overhører kræftpatienters bekymring [Doctors Ignore Cancer Patient Concerns].” Ritzau, December 19, 2011. Simpkin, Arabella L., and Richard M. Schwartzstein. 2016. “Tolerating Uncertainty—­The Next Medical Revolution?” New ­England Journal of Medicine 375 (18): 1713–1715. https://­doi​.­org​ /­10​.1­ 056​/­NEJMp1606402. Stolper, Erik, Margje Van de Wiel, Paul Van Royen, Marloes Van Bokhoven, Trudy Van der Weijden, and Geert J. Dinant. 2011. “Gut Feelings as a Third Track in General Prac­ti­tion­ers’ Diagnostic Reasoning” Journal of General Internal Medicine 26 (2): 197–203. https://­doi​.­org​ /­10​.­1007​/­s11606​-­010​-­1524​-­5. Toftegaard, Berit Skjødeberg, Flemming Bro, Alina Zalounina Falborg, and Peter Vedsted. 2016. “Impact of Continuing Medical Education in Cancer Diagnosis on GP Knowledge, Attitude and Readiness to Investigate a Before-­After Study.” BMC F ­ amily Practice 17 (95): 1–10. https://­doi​.­org​/­10​.1­ 186​/­s12875​-­016​-­0496​-­x. Weber, Max. (1919) 1922. “Science as Vocation [Wissenschaft als Beruf].” In Gesammlte Aufsaetze zur Wissenschaftslehre, 524–555. Translated and published online by Weizmann Institute of Science. https://­www​.­wisdom​.­weizmann​.­ac​.­il​/­~oded​/­X​/­WeberScienceVocation​.­pdf.

6 • M AKING C ANCER PATIENT PATHWAYS WORK RI KKE A ARHUS

Introduction In the context of what Stephen Harrison and Bruce Wood (2000) called “scientific bureaucratic medicine,” integrated care systems (e.g., clinical pathways coordinating and standardizing ser­v ices) have been considered the superior orga­nizational model for solving health care issues such as delays, variation, and conflicting interests in the Global North since the 1980s (Allen 2014; Pinder et  al 2005; Power 1999). In 2007, Denmark implemented national cancer patient pathways to accelerate cancer diagnosis and treatment and provide seamless access to standardized, high-­quality cancer care (Probst, Hussain, and Andersen 2012). Accelerating diagnosis and treatment is a po­ liti­ cally and technologically enabled pro­cess (Rosa 2010) that assumes that lives might be saved by pushing the pace of decisions and reducing cancer-­related wait times (Tørring, this volume). Overall, acceleration of diagnostic interventions is a common approach to cancer control in the Global North (Hamilton et al. 2016; Mæhle et al 2021; Neal et al. 2014). In Denmark, acceleration was first promoted through the “Agreement on Acute Action” policy in 2007 (Danish Government and Danish Regions 2007). This agreement specifies acute action—­that is, timeliness—as the most efficient way to control cancer. In this chapter, I show how the logic of the pathways has manifested in the context of cancer control. As Lochlann Jain (2013) and o­ thers (Banerjee 2020; Greco 2019; Mulemi 2015; Offersen et al. 2018) have shown, cancer is associated with a “terror of a potentially ­limited f­ uture” ( Jain 2013, 40), which encourages practices and attention directed ­toward averting death and prolonging lives. Cancer is surrounded by uncertainty and a “fundamental unknownness” ( Jain 2013, 29) that makes it difficult to grasp and control. Anthropological cancer research has shown the diverse ways (anticipated) cancer alters individual lives, social communities, and how p­ eople think about life, death, and the ­f uture (Banerjee 2020; Gibbon 2013; Jain 2013; 112



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Livingston 2012; Offersen et al. 2018). For example, in her work on ge­ne­tic programs and breast cancer in Brazil, Sahra Gibbon (2013) shows how w ­ omen draw on colonial and generational pasts and present-­day difficulties of accessing health care resources when trying to make sense of risks and potential. Similarly, Sara Marie Hebsgaard Offersen and colleagues (2018) provide Danish examples of how ­people draw on dif­fer­ent cancer mythologies when ­handling ambiguous bodily sensations that do not correspond with the so-­called alarm symptoms communicated to the public through cancer awareness campaigns. In this chapter, I argue that the implementation of accelerated cancer diagnostics like “cancer patient pathways” combined with cancer imaginaries emphasizing “the terror of a potentially ­limited ­future” ( Jain 2013, 40) result in vigilant forms of attention (Lakoff 2015). Andrew Lakoff suggests that being vigilant means being alert to potentially unexpected and dangerous f­ uture events and to “enjoin action in a precautionary mode” (2015, 45). Lakoff (2015) uses “vigilance” to analyze strategies to manage unexpected global health crises, but I am concerned with unexpected health crises at the local and situational levels during cancer diagnostics. It is difficult to anticipate cancer or know the patient’s ­future at the local level. But the cancer risk is pre­sent, and so is the desire to avert death. Vigilance is a strategy to manage the uncertain and potentially catastrophic f­ uture when cancer is suspected. In my pre­sent analy­sis, vigilance thus refers to the readiness of patients and health care professionals to put into motion what­ever is required of them to interrupt any potential cancer from developing. I show how vigilance, which in my material is a proxy for “being on time,” is tied to practices of hope and life itself—or, in reference to the above, to reduce the potential terror of cancer. In the clinical and orga­nizational guidelines for diagnosis, treatment, and rehabilitation published online by the Danish Health Authority, Danish cancer patient pathways seem like a well-­oiled machine. Like a machine, the pathways are assembled to set ­things in motion. They are composed of many small and interlinked parts, like cogwheels designed to work si­mul­ta­neously to create a smooth-­running operation. General prac­ti­tion­ers (GPs) are given the role of feeding the machine with the right kind of material by making correct decisions on whom to refer for each pathway. Case man­ag­ers are set to coordinate ­these patients’ trajectories, monitor the time schedules, and h­ andle any bumps on the road such as circumstances at the local hospital or individual patient concerns (Aarhus et al. 2019). Hospital physicians perform the diagnostic tests, disclose their suspicions and diagnoses, and decide on the next steps. The patients follow the outlined trajectory, accept invasive tests, arrange for transportation, and take on the psychological burden of waiting to learn w ­ hether they have cancer. The system provides easy access to diagnostic resources through prebooking systems, per­for­mance monitoring, and other resources. However, this well-­oiled machine depends on more than its cogwheels to function. The pathway depends on dif­fer­ent forms of time work (Flaherty 2010, 2020). As suggested by several scholars, the f­uture becomes impor­tant when cancer is

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suspected, and the choices of the pre­sent may easily be downplayed to protect the ­future ( Jain and Kaufman 2011; McMullin 2016). The growing body of lit­er­a­ture on anticipatory practices points out that f­ utures play an impor­tant role in catalyzing and orienting actions in the pre­sent (Adams, Murphy, and Clarke 2009; Stephan and Flaherty 2019). This means that a potential cancer diagnosis already impacts ­people’s lives and pre­sent practices regardless of ­whether the disease is actualized. I suggest that patients and health care professionals perform future-­ oriented time work to clear away any obstacles that could hinder the smooth-­ running operation of a pathway’s cogwheels, including the emotional distress related to a suspected cancer or circumstances of everyday life or clinical practice. With this line of thinking, we see how time work focuses on enabling the pathways to realize a specific ­future that is hopefully cancer-­free or with cancer detected at a less advanced stage. Emphasizing anticipation, I explore the agency of patients and health care professionals through the concept of “time work.” American sociologist Michael Flaherty (Flaherty 2010, 2020) argues that time is not a given phenomenon. H ­ umans can choose to customize their temporal experience, he states, through tacit micro-­ practices of time work to exert “control over self and situation” (Flaherty 2010, 8) even when t­here are imposed structures. Time work can be used to provoke or prevent certain forms of temporal experiences and is rooted in ­human desire (Flaherty 2020, 13–14). Flaherty introduces six forms of time work that p­ eople manipulate to make time: allocation, sequence, duration, timing, frequency, and taking time (2010, 12–13). In my pre­sent analy­sis, patients and health care professionals engage in time work to enable accelerated diagnostics. They do this while considering the emotional distress that often comes with cancer diagnostics and the impeding circumstances of clinical practice and patients’ everyday lives. In this chapter, the case examples of Johannes and Mikael show that patients and health care professionals often act in situations of “unknownness.” Th ­ ere is no way to “know” the risk of cancer that they face, but they know that cancer may be fatal. I suggest that vigilance is part of what encourages patients and health care professionals, reflectively or unreflectively, to initiate time work.

The Pathways and the Study The Danish public tax-­financed health care system has experienced a tremendous push to improve cancer diagnostics and treatment in past de­cades. ­Today, more than thirty pathways are implemented nationally, with the majority focused on specific organs (e.g., the lung cancer patient pathway; Danish Health Authority 2018). Each clinic implements the pathway by developing local guidelines on managing the national standards, and local variations in cancer ser­vice delivery may still exist. Pathway implementation centralizes highly specialized diagnostic tests and treatments. Although geo­graph­ic­ al distances are short in Denmark, the

T­ able 6.1

Making Cancer Patient Pathways Work 115

Standard Time Regimen for Lung Cancer Standard time regimen

Pathway description

(calendar days)

From receipt of referral to first appointment in diagnostic clinic

6

From first appointment in diagnostic clinic to end of diagnostic evaluation

24

From end of diagnostic evaluation to start of:

Surgical treatment

14

Medical treatment

11

Total: From receipt of referral to start of treatment

Radiotherapy

15 44/41/45

Source: Danish Health Authority 2018, translated by the author.

change in cancer ser­vices still requires most patients to visit more hospitals and clinics during diagnostics and treatment than previously. The local hospital is responsible for the individual pathway during the diagnostic phase. Th ­ ere, patients receive test results and diagnoses. In 2018, more than 135,000 p­ eople ­were referred to a pathway, and approximately 35,000 w ­ ere diagnosed with cancer (Danish Health Authority 2019). Pathways cover three phases: diagnosis, treatment, and rehabilitation. The guidelines delineate the referral criteria, overall steps, availability of diagnostic resources, patient information requirements, and multidisciplinary decision-­making. To accelerate ser­vices, the pathways introduce parallel actions, where one test is initiated before knowing the result of the previous one. If capacity is lacking (e.g., endoscopy times), extra diagnostic capacity is granted—­even if it means canceling patients with presumed benign conditions. The pathways also outline a clear division of responsibilities, the role of the case man­ag­er, and a set of per­for­mance standards for mea­sur­ ing pro­gress through a standard time regimen with the defined number of days that each part of the pro­cess can last (see ­Table 6.1 for a description of the standard time regimen of the lung pathway) (Danish Health Authority 2021). This requires registration of specific time points (such as initiation of a pathway) in a national database. My fieldwork has shown that patients know of a pathway’s speed, but they rarely know about the per­for­mance standards attached to it. And although case man­ag­ers understand the details of standard time regimens, many physicians do not. Th ­ ere are no explicit sanctions for not meeting the per­for­mance standards. However, hospital statistics are publicly available online, and they are popu­lar with health authorities, patient organ­izations, and the media, putting each hospital’s reputation at stake. Accordingly, many hospitals work hard to comply with the per­for­mance standards. According to the Danish Health Authority (2019),

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77 ­percent of all patients in 2018 w ­ ere treated according to the standard time regimens. In general, health care promoters describe the pathway implementation as a success (Probst, Hussain, and Andersen 2012). In this chapter, I explore how this apparent success was made pos­si­ble by devoting attention to the convoluted and complex practices that make up pathways in clinical practice and everyday life. I suggest that it is not just technology and per­for­mance standards that drive the acceleration. It also comes from the anticipation of a potentially catastrophic cancerous ­future.

The Study In this study, I draw on ethnographic fieldwork from 2013 to 2015 in two GP clinics and at two hospitals: a regional hospital and a university hospital in the Central Denmark Region. This fieldwork explored the diagnostic phase of three pathways: lung cancer, colorectal cancer, and severe nonspecific symptoms that could be cancer. I observed the activities of ­these three pathways individually by observing GPs in their general clinical work and when a patient was referred to a pathway. Once referred, I accompanied the patient to consultations and tests at the hospital. I also observed case man­ag­ers, physicians, technicians, nurses, and secretaries at hospital clinics. I observed biopsies, patient consultations, computed tomography (CT) scans, registration, coordination work, and other clinic activity. Some health care professionals w ­ ere involved with cancer diagnostics full-­time, and some had other clinical tasks such as consulting with chronically ill patients at outpatient clinics. Besides observing health care professionals and patients from GP clinics, I also met patients at diagnostic clinics. I observed ­these patients during a single or several diagnostic tests and consultations (e.g., CT scans, colonoscopies, or first consultations with a physician). Most of the patients w ­ ere over sixty years old, both working and retired. Almost all arrived at the diagnostic clinic with a relative, though several lived alone. Some patients felt sick with numerous symptoms and had feared cancer when seeing their GP. ­Others had consulted their GP for what they believed ­were trivial m ­ atters. Some ­were also ­there due to diagnostics for a benign health prob­lem that showed suspected cancer. What­ever the circumstances, most patients w ­ ere distressed during the diagnostic period. Together, we shared doubts and fears as they tried to navigate the fundamental unknownness of cancer and the complexities of cancer diagnostics. My observations ­were accompanied by semi­structured interviews with thirteen patients and twenty-­six health care professionals (ten case man­ag­ers—­ secretaries/nurses; eight hospital physicians; and four GPs, three GP secretaries, and one GP nurse). The patient interviews took place in the patient’s home, often with relatives pre­sent. In addition, I interviewed health care professionals at the hospital during work hours. The interviews lasted between 35 and 120 minutes and ­were audio-­recorded and transcribed. My fieldwork also included collecting early



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diagnosis policy documents, patient leaflets, and pathway-­related orga­nizational and clinical guidelines. Pseudonyms are used throughout the chapter to protect the privacy of the individuals interviewed and observed.

Balancing Hopes and Fears Keeping patients on their feet during a strenuous diagnostic pro­cess is a vital concern for patients and health care professionals, as the case of Johannes, a sixty-­ five-­year-­old pensioner, illustrates. Johannes and his wife, Louise, live an active life in a typical Danish middle-­class single-­family ­house in a small town. I first meet them on a Monday after­noon just before their initial consultation with the hospital physician, Søren. They tell me that Johannes had a per­sis­tent cough that he believed was a remnant of a winter flu. He was other­wise healthy, taking a daily six-­kilometer walk in the hills. Nevertheless, the cough persisted, so he went to see his GP, who sent him to be checked for potential remnants of pneumonia in his lungs. No one suspected cancer u­ ntil they received a call from his GP on Friday after­noon. ­Earlier that Friday, I observed se­nior pulmonologist Søren g­ oing through the day’s CT scans at the lung cancer clinic. He brings up Johannes’s scan on his screen, which shows a six-­centimeter wide lung tumor—­possibly cancerous, Søren explains. Søren decides not to wait for the regular radiology conference to conclude. Instead, he asks Nanna, who does paperwork in the room next door, to call Johannes in for further diagnostics through a lung cancer patient pathway at the first available appointment. Nanna is an experienced nurse and case man­ag­er. She has the standard time regimen memorized, including which weekdays each diagnostic procedure is performed. I join Nanna while she uses this knowledge to coordinate Johannes’s diagnostic pro­cess “to avoid time waste and secure the pace of the pathway,” she says. Nanna plans Johannes’s initial diagnostic tests, and she knows that she has no other choice than to call Johannes for consultation with Søren the coming Monday. The upcoming weekend makes it impossible “to call him in through the usual channels,” Nanna explains. That is, according to the hospital’s ethics of good care, the referring physician—­often the GP—­should invite the patient to a pathway via an in-­person meeting, Nanna tells me. This should not be done on a Friday ­because it leaves the patient with nowhere to go with questions or worries over the weekend. However, Nanna does not have time to adhere to ­these local ethics of good care, so she decides to call Johannes’s GP to ask her to call Johannes and “ease the shock.” On Monday, I sit with Nanna, Johannes, and Louise in the consultation room and wait for Søren. Johannes and Louise are in shock, they say. They had been called by Johannes’s GP on Friday after­noon and been told, they explain to Nanna, that Johannes had lung cancer. Nanna looks surprised. Her eyebrows go up, and she is about to speak when Søren arrives in the consultation room and sits down

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with the rest of us at a small round ­table. “We called you in ­because ­there’s something on your CT scan,” Søren says. Looking down at the t­ able, Johannes replies, “Yes, it was the worst pos­si­ble message. Lung cancer is horrible . . . ​definitely! I am, no, we are, completely wrecked.” Søren looks bewildered and replies, “Hey! We ­don’t know yet if you have cancer—­that’s why y­ ou’re h­ ere.” Søren usually uses the CT scan pictures to illustrate to patients what has been found, but this time he does not. Instead, he goes on to explain the necessity of a biopsy. “Your GP’s cancer diagnosis is simply incorrect ­because nobody knows about cancer before a biopsy,” he says. Søren stresses that he has prepared several diagnostic investigations for them to find out ­whether it is, in fact, cancer. He explains that Johannes’s enrollment into a pathway provides them with easy access to the necessary tests—­and a quick diagnosis. Listening to Søren, Johannes and Louise seem slightly relieved. They turn their attention to Nanna, who explains the types of tests that are already booked. In the following weeks, Johannes is busy with the diagnostic tests. In the interview, Johannes calls the days in between the tests his “dark days,” where he sits in his homemade armchair with too much time to think. Nothing is happening for him diagnostically during ­these days. He has the impression that time is standing still—­and slipping away. Johannes and Louise also say that they strug­gle to find a balance between h­ andling the emotionally distressing situation and mobilizing enough strength to go through the diagnostic pro­cess. The pro­cess results in Johannes receiving a lung cancer diagnosis. Drawing on Flaherty’s conceptual notion of time work (2010), we may define the actions of Johannes, Louise, and their health care professionals as attempts to prevent a par­tic­u­lar temporality of the diagnostic pro­cess. Just de­cades ago, a cancer diagnosis was only disclosed to relatives, and the patient was left in the dark (Good et al. 1990). ­Today, pathway guidelines and hospitals’ ethics of good care explain that patients should be immediately informed about suspicions, test results, and diagnoses and clearly define how this information should be disseminated. Despite this, Johannes is not told about his suspected cancer face to face; instead he is called in by phone, which results in a situation where the GP tells the c­ ouple that Johannes has cancer—or, at least, Johannes and Louise only hear the word “cancer” and not the GP’s pos­si­ble reservations. Nanna is aware of the pathway guidelines and the hospital’s ethics of good care, but the pathway’s time regimen and the circumstances that define its schedule made it impossible for her to adhere to it. So she focuses her energy on customizing Johannes’s experience of disclosure. Nanna did this through “timing” (Flaherty 2010, 79), weighing the best way to call in Johannes against the need to coordinate a trajectory that provides quick clarification. She intentionally times when Johannes is notified of his potential diagnosis. Nanna knows from experience that being told about potential cancer is a difficult situation for the patient. Through such time work, Nanna manages the prob­lems of the pre­sent to increase hope and ­handle the uncertain situation of Johannes’s cancer diagnosis.



Making Cancer Patient Pathways Work 119

Like Nanna, Søren also does “timing” when he changes his usual disclosure practices and downplays the cancer risk. By customizing the timing of the bad news, Søren does what Ignacia Arteaga Pérez (2022, 207) in her work on colorectal cancer calls “emotion work to keep lives g­ oing.” Søren aims to balance hopes and fears to create a situation where Johannes can follow the pace of the pathway. Keeping patients emotionally stable in situations like this is common time work for health care professionals. For example, the word “cancer” is deleted in letters sent to ­people with suspected cancer, and “cancer” is left out of the clinic’s name when phoning patients. Th ­ ese ­simple steps are taken to avoid generating the worries that the word “cancer” can easily cause. ­These are, as Pérez suggests, moral practices to “strive for ‘the good’ within concrete circumstances” (2022, 198). Disclosure practices are pro­cessual and, in Johannes’s case, complicated by the pathway’s immanent time focus and the vigilant practices of patients and health care professionals. Søren also does the time work of “duration” (Flaherty 2010, 14). Duration is defined as an attempt to make an interval seem shorter or longer than its objective length. Søren emphasizes that enrollment in the pathway provides Johannes with a prompt clarification. He thereby uses the pathway’s pace to shorten the perceived period where Johannes does not have answers. Like Nanna, Søren is guided in his pre­sent actions by the catastrophic f­uture of potential cancer. Acting vigilant, he needs Johannes to be emotionally pre­sent to be able to take part in the pathway, which Søren considers the best option to have quick clarification. Søren aims to balance Johannes’s hopes and fears, even if Søren cannot adhere to pathway guidelines on patient information. Immoral or dishonest actions—­such as downplaying an inevitable cancer risk—­become meaningful examples of ongoing vigilance in practice. Balancing hopes and fears through the time work of “duration” also characterizes some of the work patients perform during the diagnostic pro­cess. In Johannes’s case, being busy with diagnostic tests, despite the discomfort they can bring, functions to customize his temporal experience of the duration of the difficult situation. While he interprets the business and speed of action as signs of seriousness, he also considers them a resource that works to his benefit and helps him manage his fears to meet his goal of timely action to h­ andle the uncertain situation. As Johannes said in the interview, “if we want, as we want to, to live a prolonged life together, then you have to put every­thing aside and make cancer diagnosis your highest priority.” In addition, Johannes engages in other forms of time work to reduce distress and allocate time for the diagnostic pro­cess. According to Flaherty (2010, 98), “allocation” refers to the efforts of making time for certain activities to make sure they can happen. For Johannes, allocating time is about making himself emotionally able to participate in the diagnostic pro­cess. To him, time work is inseparable from emotional work. Johannes engages in allocation activities by preparing Louise for a life without him. He teaches her about online banking and how to fuel the

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car, and he avoids research about lung cancer so he does not get more anxious. Johannes does this to control his pre­sent worries and anxiety about the f­ uture. Johannes does not know about the exact time regimen of the lung pathway, but he is told about the promise of quick action, which reassures him that he should stay vigilant. For Johannes, the pathway becomes a “technology of hope,” which I consider a resource of the pre­sent to achieve a ­future goal. It promotes the hope necessary for him to cope with the situation. He engages in dif­fer­ent forms of time work to avoid losing his footing and achieve the timeliness that he and Louise would like to reduce the distress of the situation. This work is catalyzed by Johannes’s wish to avert death and to have more time with Louise in the ­future. While Johannes experiences the “well-­oiled machine” described ­earlier, his case also illustrates that the pro­cesses of becoming a cancer patient and implementing the pathways in clinical practice are filled with ambiguities. Th ­ ese issues extend beyond the borders of the health care system and require vigilant action by both patients and health care professionals to h­ andle the uncertainties and unknownness of cancer diagnostics and secure the realization of the desired ­future.

Customizing Cancer Patient Pathways Case man­ag­ers often strug­gle to schedule appointments that balance patients’ current needs and ­future lives and well-­being. An example of this is the case of Mikael, an unskilled worker in his mid-­sixties who lives with his wife on a quiet street. Due to cutbacks at work, he has de­cided to retire soon. He is a bit restless about it, but he also looks forward to spending more time with his grandchildren. I meet Mikael at the cancer diagnostic clinic’s waiting room before his initial consultation, where he tells me that he has seen his GP a c­ ouple of times b­ ecause of a painful wound on his lower leg. The GP found swollen lymph nodes, a low hemoglobin count, and high infection counts. A ­ fter a month of Mikael’s GP trying dif­fer­ ent treatments, he referred him to the pathway of severe nonspecific symptoms that could be cancer. Mikael does not think he has cancer, he tells me in the waiting room, but he knows that his referral is “to rule out cancer.” I ask him how he managed to get a day off work on such short notice—it was only yesterday that his GP had sent the referral. “Well—­for such a t­ hing—­you’ll find a way,” he explains. “At this clinic, we aim to find out if cancer is the reason b­ ehind your symptoms,” says Karsten, a young physician at the clinic. He goes through Mikael’s symptoms and test results and asks about his health and well-­being. Karsten reassures Mikael that nothing is alarming, but he would like to do a physical examination and refer Mikael for further blood tests, a CT scan, and a colonoscopy. I wait in the office of Mikael’s case man­ag­er, Linda, during the physical exam. Karsten enters the office ­after a short while, and Linda asks, “Well, what do you think—­ does he have cancer?” Karsten says, “Prob­ably not. But the ­thing is, you never know.” He then informs Linda about the diagnostic tests that should be booked.



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I walk with Karsten to the consultation room. “It’ll prob­ably all happen next week—we are a fast-­working unit, you know,” he tells Mikael. Mikael asks if the tests must be next week b­ ecause it w ­ ill be his last week of work before retirement. Karsten explains, “When we suspect cancer, you have an accelerated diagnostic process—­it’s ­because y­ ou’re enrolled in a cancer patient pathway, you know. But ask Linda.” Karsten says that the risk of cancer is “not that high, but on the other hand, the pathway paves the way for access to other­wise busy health care resources and a quick clarification.” Mikael leaves for the waiting room, and I go to Linda’s office. She books the first examination and sends an online request for the second. When booking the colonoscopy, the booking slots reserved for her at the colonoscopy clinic are all taken. So she calls the clinic and persuades them to find an available slot in the coming week. Linda counts the days on the calendar on her desk and notes the upcoming national holiday, leaving her with fewer days to complete his diagnostic pro­cess. Linda calls Mikael in, and we sit around a small t­ able. Linda hands Mikael a paper with his scheduled appointments and explains the medical preparation pro­cess and food restrictions. Mikael interrupts her, saying that they coincide with his grand­child’s confirmation and his retirement. He asks if the investigations could be postponed another week: “then I’ll have plenty of time b­ ecause I’m retiring.” Linda replies, “It’s prob­ably best just to accept the plan, you know. We follow a fast pace h­ ere, with only twenty-­two calendar days to finish, and we are being monitored. You ­were lucky to get a fast appointment for the colonoscopy. They are difficult to get. Postponing it w ­ ill cost you wait time.” Mikael nods, “Okay, it’s fine.” They go on to discuss Mikael’s transportation options for the colonoscopy b­ ecause his wife w ­ ill be working that day. On the colonoscopy day, Mikael tells me that his neighbor took him to the hospital. He continues that Linda called him a few days ago, explaining that Karsten had de­cided to do yet another scan. I ask him about his grand­child’s confirmation. They had a wonderful day, but he had to inform f­ amily and other guests about his enrollment in the pathway to explain his lack of interest in the food that was served. “Well, not what I had preferred, but that’s how it is,” he sighs. ­After Mikael’s colonoscopy, I go to see Linda. She explains that she received the results from the extra scan this morning, revealing something on his adrenal glands. She was booking him for a third CT scan. She de­cided not to tell Mikael about it just before his colonoscopy—he was anxious enough as it was. A few days ­later, Mikael is back at the diagnostic clinic and told that cancer is ruled out. During my interview with Mikael a week l­ater, he says he feels a weight off his shoulders, knowing that he does not have cancer. He also explains that the fear of cancer had sneaked up on him and his wife during the diagnostic pro­cess. Something being found that needed further investigation, the many diagnostic evaluations, and the hurried pace of the appointments had changed their views from feeling convinced that ­there was no cancer to increasing anxiety and doubt.

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Mikael performs the kind of time work that centers on orchestrating the aspects of his daily life that could hinder an accelerated pro­cess. At the beginning of the diagnostic pro­cess, Mikael uses time work to change the “sequence” (Flaherty 2010, 57) by customizing the succession of scheduled investigations and his everyday activities. Although patient-­centeredness is an ambition in Danish health care, Mikael fails to customize the sequence of his appointments to meet other life obligations and desires. Mikael also fails in his time work of “timing” when he tries to control when to disclose that he might have cancer to friends and ­family. Mikael also fails to create his schedule of investigations to suit his social schedule. ­Because of all this, Mikael goes outside his comfort zone and balances conflicting demands on his time: his desire to be a good patient, his desire to attend the farewell reception and confirmation, and the increasing uncertainty of a cancer diagnosis. Mikael chooses to adhere to the diagnostic schedule to h­ andle the unknownness of a cancer diagnosis and have a quick clarification. But during fieldwork, I came across other examples where patients succeeded in customizing the sequence of their diagnostic procedures: for instance, by canceling diagnostic appointments on the phone rather than face to face or by not showing up for the planned consultations. By accepting the plan, Mikael engages in “allocating” time for the diagnostic pro­cess. He takes days off from work, asks his neighbor for transportation, and cancels his retirement cele­bration. Accepting the plan also means that Mikael must allocate time to prepare for diagnostic tests and examinations. He needs to coordinate practicalities, adhere to food restrictions, take medi­cation, and be alert to potential side effects. Through his time work and the resulting compromises, Mikael performs vigilant practices that aim to reduce his cancer risk through a fast clarification. Linda coordinates Mikael’s trajectory and does time work to ensure that the system is ready. To make the pathways work, Linda must make time by exercising control over the “frequency” (Flaherty 2010, 36) and availability of diagnostic resources—­like when she insists on extra capacity at the collaborating department or when she does not meet Mikael’s wishes. This becomes impor­tant ­because the success of pathways presupposes the availability of ­human and technological resources. But it does not consider that some resources are only available on specific weekdays, that outpatient clinics are closed on national holidays (which count in the standard time regimens), or that patients have other social obligations. Like Mikael, Linda also customizes the “sequence,” but her focus is primarily on the system and how she can design a trajectory without any time waste, despite institutional impediments like closing days and scarce resources. According to Flaherty (2020, 13), time work can be done to customize one’s own temporal experience or that of o­ thers. Linda works to customize Mikael’s understanding of the best succession of activities by alerting Mikael of the need for speed when he asks for postponement. Linda’s decision not to tell Mikael



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about yet another CT scan on the day of his colonoscopy is an example of how Linda “times” her actions to not add to Mikael’s anxiety. Karsten is also engaged in “timing” when he tries to convince Mikael that the proposed timing of the planned trajectory is in Mikael’s best interest. Fi­nally, when Karsten says that the suspicion is not big but books several diagnostic investigations, it can be interpreted as an act of not wanting to steal or “take time” from a potential cancer patient. In this case, Karsten engages in this form of time work by allowing the uncertainty in Mikael’s cancer diagnosis and the pathway’s availability of tests to guide his decisions. Linda and Karsten work to overcome obstacles in the clinical environment and to make sure that Mikael can accept the pathway pace. They do so in a vigilant response to the uncertainties, unknownness, and potential ­future crisis of cancer. My fieldwork provided numerous other situations where health care professionals did time work to take authorized action to overcome impeding institutional or clinical circumstances. ­These include when a biopsy technician made an extra phone call to change the “sequence” at the pathology department and not delay results, or when the “frequency” of having a blood test is extended by taking the test in the eve­ning to suit a patient’s schedule. Tests required for treatment are “timed” before the diagnosis is disclosed to the patient to avoid delay, and incorrect information is intentionally written in the booking system to “allocate” patient transportation. In a Norwegian study, similar practices of temporal agency are described as examples of “gaming the system” (Melby and Håland 2021, 8). I suggest that gaming the system is an attempt to realize a par­tic­u­lar desired ­future through vigilant practices. Although the work of patients and health care professionals may differ in nature, they unite in acting vigilantly in the face of potential cancer to make cancer diagnosis pos­si­ble, meet per­for­mance standards, reduce distress, and increase hope.

Encouraging Time Work I suggest that the time work of patients and health care professionals can be understood as acts of vigilance to ensure the success of the pathway. Analyses of standardization in practice often point out that standards restrict and constrain agency (Armstrong 2007; Bowker and Star 1999; Ritzer 2013; Timmermans and Mauck 2005). For instance, a study on Danish pathways showed that physicians feel restricted in ­doing proper clinical work (Obling 2013). Although I heard similar reservations during my fieldwork, my pre­sent analy­sis suggests that patients and health care professionals consider the pathways a “technology of hope” and therefore do what they can to make them work. Their efforts could be interpreted deterministically as a passive subordination to structures or the result of incentive structures such as per­for­mance standards. However, Flaherty has argued (2020) that what may look like deterministic demands on the surface consist of negotiations, choices, and deliberations on

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preferred temporal experiences. Thus, as suggested by Flaherty (2020) and ­others (e.g., de Certeau 1988; Greco 2019; Timmermans and Berg 1997), h­ umans find ways to navigate imposed structures to realize a par­tic­ul­ar ­future. The two cases I have presented illustrate that patients and health care professionals are not positioned as passive victims but are engaged through time work in making the pathways work. Further, their time work, in accordance with Flaherty (2020, 17), is conditioned not by duty but by dif­fer­ent aspects of cultures, orga­nizational contexts, and relationships. The cases show that the time work of patients and health care professionals is encouraged and conditioned by several ­factors. One ­factor is the temporal logic (per­for­mance standards), which is often considered the motivating f­ actor b­ ehind a desired be­hav­ior in economic theory and in the lit­er­a­ture on how standards affect practice (Timmermans 2005). The per­for­mance standards of the pathways ­were introduced to attain the government’s goal of timely action. Aside from the per­for­mance standards, cancer care is also governed by law regarding the maximum wait times for life-­threatening diseases. Unlike the per­for­mance standards, this law is a patient right. In practice, however, it is the per­for­mance standards that health care professionals refer to when talking about the pathways’ standard time regimens. As outlined by, among o­ thers, Anne Sidenius and colleagues (2020) and Kirstine Zinck Pedersen (2017), many Danish health care professionals have an ambivalent attitude ­toward the number of days defined in the pathways, perceiving them to be theoretical and a product of new public management. The cases I have presented show that while health care professionals express dual concerns about the risk of time waste and about patients not being able to manage the accelerated pro­cess, they also acknowledge that acceleration facilitates their work and is impor­tant for certain cancer types and subtypes. As I have shown, the accelerated pace was sometimes emphasized to convince patients to adhere to the outlined schedule. But, as in the case of Johannes, they could also become a hindrance to a trajectory’s design. Most of the patients I encountered during fieldwork w ­ ere convinced that suspected cancer requires timely action, and the cases h­ ere show that the pathways stand out as a “technology of hope” that can facilitate the desired acute action. Overall, the cases show that aside from per­for­mance standards, cancer imaginaries encourage the time work of patients and health care professionals. ­Here, cancer is promoted as a dreadful disease that the individual and the government aim to control to prevent cancerous death (cf. Jain 2013; Offersen et al. 2018). The cases illustrate that an anticipated catastrophic ­future encourages patients and health care professionals to do time work to avert or postpone death. Johannes speaks of his desire to have a long life with Louise; Mikael accepts the planned schedule despite other obligations; and health care professionals aim to provide patients with a quick diagnosis despite clinical circumstances. Furthermore, ­these cases show that in situations of diagnostic uncertainty, health care professionals



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focus on not stealing time by acting fast. Unlike per­for­mance standards, the cancer imaginaries do not spell out numbers or figures to comply with; instead, they act as a moral incentive to patients and health care professionals. Fi­nally, the cases show that both temporal logic and cancer imaginaries promote and substantiate vigilance as a strategy to ­handle the uncertainties and unknownness of individual cancer diagnostics. This vigilance materializes through time work aimed at making the pathways work ­because the pathways stand out as technologies of hope. Therefore, vigilance is part of what encourages patients and health care professionals to initiate time work. Vigilance pushes pathway implementation in Danish health care at the orga­ nizational and individual levels and contributes to its apparent success. Still, the ongoing practices of vigilance might inhibit the opportunity to opt out of the diagnostic pro­cess. Hospitals are mea­sured on their success in diagnosing disease on time. The desire to avert death orients the focus away from pre­sent hassles and ­toward a potential cancerous f­ uture. As Barbara Prainsack (2017) has warned, in situations with only difficult ways to opt out, power asymmetries and individual considerations may remain hidden. ­Those who are not able to succeed are left alone with ­little help, which is shown in my fieldwork examples. In the case of the pathways, we are reminded that while some patients potentially receive too much treatment, the patients who are not able to do the time work may be excluded, leaving them with less access to health care resources.

Conclusion In this chapter, I explored the dynamics of a highly alert health care system and how immanent timeliness at the micro-­level materializes as ongoing practices of vigilance. I have done so with a case that examines the implementation of the cancer patient pathways in everyday and clinical settings. I have shown that patients and health care professionals who are oriented ­toward an anticipated ­future with cancer do not question timely action and early diagnosis. This encourages the work performed. It is work that I have shown to be necessary for the smooth-­running operations of the pathways, regardless of their inherent promise of standardizing clinical practice. The work is required to allocate time and space to accelerate the cancer diagnosis and to ensure the care needed when facing a crisis and a strenuous diagnostic pro­cess. The work also extends beyond the borders of the health care system to involve ­family life, work life, morality, fear of d­ ying, and hope. With this in mind, we can begin to understand what it means to be a patient or a health care professional working in a vigilant mode. I also have shown that despite the standardized and time-­focused diagnostic pro­cess involved with the pathways, their implementation requires an interplay between temporal agency and structure to be successful. In line with Stefan Timmermans and Marc Berg (1997), I suggest that the work performed, the so-­called

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tinkering with protocol, does not show the limits of standardization—­rather it is necessary for its functioning. I demonstrated that the work performed is oriented ­toward the f­ uture of suspected cancer, and this f­ uture guides the practices of the pre­sent. As argued by Vincanne Adams and colleagues (2009), anticipations may have the role of “binding subjects in affective economies of fear, hope, salvation and precariousness oriented temporally ­toward f­ utures already made ‘real’ in the pre­ sent” (260). As ­these cases demonstrate, patients and health care professionals are drawn closely together, resulting in collective practices of vigilance to obtain quick diagnosis through pathways. The pathways thus operate through a configuration of a patient’s pos­si­ble f­ uture, which does not always become a real­ity yet nonetheless impacts the pre­sent. The question is, therefore, not w ­ hether the patient or health care professional is subordinated and a victim of acceleration and standardization or performs time work, but how patients’ and health care professionals’ agency affects or is affected by the pathway structures and the desire to avert death. In other words, we learn that practices that may appear immoral or untimely from the outside are, in fact, meaningful to make pathways work. Fi­nally, to better understand the current prob­lems of unwanted variation in the execution of the cancer patient pathways, we must acknowledge the amount of effort that patients and health care professionals invest in their daily endeavors to act vigilantly to prevent potentially cancerous ­futures and secure life.

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7 • “KEEPING AN EYE ON IT ” Infrastructures of Lung Cancer Uncertainty and Certainty M ICH AL FRUM ER

Introduction As medical historian David Cantor (2007) has argued, aspirations of controlling cancer in the twentieth c­ entury have come to embrace a medicalized notion of prevention that emphasizes early diagnosis and treatment, prophylactic surgery, and screening. Early diagnosis initiatives have increasingly sought to make p­ eople react to symptoms of cancer—­for instance, through so-­called awareness campaigns or by lowering referral thresholds and ensuring fast-­track cancer patient pathways (Aarhus, Andersen, and Kristensen, this volume). By contrast, early detection initiatives have sought to detect signs of cancer in presymptomatic populations—­for instance, through mass screening (Cantor 2007; Pérez 2021; Valier 2012). Throughout this chapter, surveillance denotes the practice of offering computed tomography (CT) scans to keep watch over ­whether a tissue change grows or other­wise develops, and this chapter focuses on CT surveillance of indeterminate lung tissue changes. Such changes are not yet cancer but might be indicative of a ­future cancer. Surveillance for tissue changes is not based on screening, nor is it based solely on symptom awareness or appraisal. Rather, it is based on the visualization of potentially pathological tissue changes, like regular CT scans performed ­because of symptoms like coughing. Hence, the case for surveillance on tissue changes conflates the distinction between diagnosis and detection. Additionally, the specific case made for surveillance is neither about genomics nor numerical testing of elevated levels, which have been explored by, for example, Helen Valier (2012), Sahra Gibbon (2007), Nicole Nelson, Peter Keating, and Alberto Cambrosio (2013), and Ignazia Arteaga Pérez (2021). Rather, it is an example of what Ilana Löwy (2010) has called “morphological risk”: the vigilant surveillance of mere changes in the form or structure of tissue that could be tied 129

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to a potential of cancer in the ­future. Other clinical examples of observing indeterminate tissue changes include colon or bladder polyps and in situ changes in the breast or cervix. Notably, the detection of subcentimeter lung changes is not based on a molecular gaze (Rose 2007, 12) but is made pos­si­ble through a visual gaze mediated by CT scanning. On CT images, small lung changes appear as denser white areas. In consultations, they are often described as “spots” or “shadows” on the lungs and in biomedical jargon are defined as pulmonary nodules. Subcentimeter lung changes “may be indicative of a cancer” in about 1 to 3 ­percent of detected changes, with the risk being exponentially related to the size of the change (McWilliams et al. 2013). Studies have suggested that somewhere between 20 and 60  ­percent of ­people older than fifty years ­will have such small tissue changes (Danish Lung Cancer Group [DLCG] 2020; Guldbrandt et al. 2014), so lung changes are very common at older ages and have a low risk of cancer. Moreover, t­ hese tissue changes may be vis­i­ble on a CT scan, but they are not perceptible as “symptoms” to the tactile, experienced body. In Denmark, as in other parts of the Global North, a strong emphasis on “timeliness” has accelerated cancer patient trajectories and lowered risk thresholds (Aarhus, this volume; Andersen 2017; Timmermann and Toon 2012; Naess and Haland 2021). In recent years, this has been accompanied by increased diagnostic activity, as still more ­people are investigated due to cancer suspicion.1 In the fall of 2018, I walked down one of the hallways of a Danish hospital clinic and into the consultation room of Birgitte, the nurse in charge of the clinic’s consultations on tissue changes. I greeted her and sat down on my chair in the corner ­behind her. When talking to me, Birgitte would sometimes reflect on the rationale ­behind the surveillance and stress to me, “We do this surveillance2 that might seem like a lot, so that ­these ­people w ­ on’t end up at the other end of the hallway.” Birgitte made this spatial reference to the part of the clinic where ­people go for cancer diagnostics, while implying that the offer of surveillance was a way to avert ­people receiving a lung cancer diagnosis. The spatial separation in the clinic between consultations about diagnostics and consultations about surveillance for tissue changes illustrates, in an analytical sense, attempts to prevent t­ hose in surveillance from moving into cancer diagnostics. With this meta­phorical and yet concrete image of the hallway, Birgitte emphasized the need to investigate cancer suspicions at early stages in order to control cancer and the spatial infrastructure that supports this need. We have only sparse insights into the building of cancer diagnostic infrastructures. Likewise, we know ­little about how t­ hese infrastructures mediate diagnostic practices and the embodied experiences of ­those involved. If we think of infrastructures as systems that facilitate flows (of ­people, objects, and ideas) and reflect and inform poetics (as emotional and signifying form) and politics (as aspects of government) (Larkin 2013, 328, 329), then—as seen from the ethnographic details of the diagnostic clinics—we are reminded of the affective dimensions invested in



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the offer and adherence to being monitored. The diagnostic infrastructure of surveillance thus acts as one vehicle, whereby a desire to control cancer materializes in practices (cf. Larkin 2013). To make sense of the movement of “healthy” Danish citizens into continuous medical testing and surveillance, I suggest attending to the infrastructures and their entanglements of the affective, the temporal, and the material (Carey and Pedersen 2017). My argument in this chapter is threefold. First, I argue that con­temporary time structures of cancer surveillance manifest as expanding infrastructures that build (and build upon) strong and interdependent relations between uncertainty and certainty, between fear and trust. Second, I suggest that ­these changing and expanding infrastructures reflect what the sociologist Hartmut Rosa has referred to as “acceleration” (Rosa 2013). Furthering a line of thought from the Frankfurt School, Rosa has presented a critique of late-­modern socie­ties (see also Rosa 2020). According to Rosa (2013), acceleration is a defining characteristic of con­temporary temporal structures and attempts to control, which comes with fundamental transformations in the tempo of modern social life (71–80). In the exploration of what the accelerated infrastructures entail, I argue that surveillance for tissue changes increasingly compresses the experience of the pre­sent (Rosa 2013, 76–77). Third, I argue that t­ hese infrastructures cultivate positive attitudes ­toward “keeping an eye on” an identified lung change, which affords a social contract of intimate and expanding relations of surveillance between the Danish welfare state and its citizens. I suggest that such infrastructures may have a “promissory effect,” as previously suggested by Madeleine Reeves (2017).

Predicting Cancerous ­Futures As testified by research, attempts to control ­future cancers often produce groups of “pre-­symptomatic” or “at-­risk” patients (Svendsen 2006; Gibbon 2007; Löwy 2010). Overall, research exploring the experiences and management of being “at risk” of getting cancer has tended to focus on female cancers and screening, especially on ge­ne­tic testing for breast cancer and the Pap smear for cervical cancer (Blomberg et al. 2009; Forss et al. 2004; Gibbon 2007; Mozersky 2012). This lit­er­a­ ture often emphasizes questions of subjectivity and how new types of (bio)sociality converge around dif­fer­ent forms of at-­risk status (Scott et  al. 2005; Gibbon and Novas 2008). It further suggests how attempts to prevent suffering and death also foster fear and uncertainty (Forss et al. 2004; Gibbon 2013; Heinsen, Wahlberg, and Petersen 2021; Jain 2013). Ilana Löwy (2010) has described how the detection of at-­risk states in the area of breast and ovarian cancer has become an increasingly common consequence of routine medical care. She argues that this push for yet e­ arlier diagnosis of cancer has created a gap between “lived cancer” as experienced suffering and “biomedical cancer” as defined through diagnostics at molecular or cellular levels. Overall, this continuing growth of at-­risk patient groups suggests a general disease sensitization

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(Andersen 2017) with the entailed experiences of anticipating and fearing disease that may never occur (Adams, Murphy, and Clarke 2009). As Laura Louise Heinsen and colleagues (2021) argue in the case of ge­ne­tic risk for hereditary colorectal cancer (what is called Lynch syndrome), this sort of “preventive healthcare complex” pushes ­toward aspirations of “staying healthy” and entails expanding groups of ­people who come to live “surveillance lives” ­shaped by lifelong interactions with the health care system, such as through regular outpatient colonoscopies. Furthermore, continuing research illustrates that patient expectations as to the benefits of biomedical interventions are overestimated—­characterized by hope and expressing a clear preference for intervention at all risk levels—­whereas potential harm is correspondingly underestimated (Hoffmann and Del Mar 2015; Kaufman 2015; Rose 2007). Research on at-­risk populations supports this and illustrates that p­ eople willingly engage in biomedical intervention even if participation changes their thoughts and practices on kinship, f­amily building, old age, and health (Gibbon and Novas 2008; Jain 2013; Konrad 2005; Svendsen 2006). In a Danish setting, Mette Nordahl Svendsen (2006) has explored notions of kinship and ­family in cancer ge­ne­tic counseling and how ­these predictive practices transform understandings of biology and sociality and influence how relations are constituted or not. In a similar manner, Gibbon (2013) has explored the intricate relations between kinship, clinical practice, and medical repre­sen­ta­tions and research. Gibbon describes the pro­cesses of localizing readings of heredity or “ge­ne­tic ancestry” in cancer-­genetic clinics in southern Brazil. She argues that “embodied risk” or “embodied vulnerability” is dynamically constituted, with the potential of cancer being ambiguous and “plastic,” both oriented ­toward the ­future but also ­toward immediate attempts to secure basic health needs. This chapter contributes to this growing field of research on “at-­risk” prediction and prevention, yet outside the prominence of cancer ge­ne­tics, by exploring the expanding infrastructures that connect and mediate between ­people, place, and risk.

Detecting Lung Cancer and Tissue Changes in Denmark With more than 40,000 deaths each year, cancer is the leading cause of death in Denmark. ­Every year, more than 4,600 Danes are diagnosed specifically with lung cancer, and around 3,700 p­ eople ­will die from it. Lung cancer thus accounts for most cancer deaths.3 As cancer stage at the time of diagnosis is seen as the strongest predictor of survival (the lower the stage, the better), diagnostic efforts have turned t­oward increasingly smaller and potentially significant signs of a f­uture cancer. Generally, tissue changes are detected via CT scans, which are performed due to bodily sensations such as prolonged coughing or breathlessness. Another route to detection is when a CT scan is performed for reasons other than lung-­ related issues (such as heart trou­bles) but a part of the lung is also scanned; the detection of a tissue change is then denoted as an “incidental finding.”



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As a socially mediated technology, the CT scanner acts as a condition for the possibility of receiving surveillance care ­under the Danish politics of cancer control; it mediates what may be conceived as “a risk” (see also Pérez 2021). In the relatively affluent Danish health care system, CT scans are routinely used in the diagnostic pro­cess. CT scanners are located in ­every radiology department throughout the country at both specialized and regional hospitals. Since the early 2000s, the resolution in CT scanners has accelerated tremendously. This means that smaller and smaller tissue changes are detectable, faster, cheaper, and at decreasing radiation doses. This development has brought an explosion in the use of CT scanning in Denmark during the past two de­cades; their use increased by more than 250  ­percent from 2003 to 2014, from around 230,000 CT scans in 2003 to 850,000 CT scans in 2014.4 The structured cancer patient pathways have also pushed the increased use of CT scans. Now, radiologists may detect changes that cannot be biopsied (as would be the gold standard of cancer diagnostics) and, therefore, are indeterminate by definition.5 My fieldwork focused on the daily clinical work of two hospital outpatient clinics for lung cancer diagnostics, which ­were located in the Central Denmark Region. One of ­these clinics was a university clinic, and the other was located at a smaller hospital in the provinces. I had been acquainted with the university clinic since 2015 as the site of my fieldwork for my master’s thesis and my PhD studies. Between August 2018 and March 2020 when I revisited the field, I included the second clinic and spent the majority of my time ­there. This chapter is empirically situated in clinical settings. Through the clinics, I followed the trajectory of tissue changes in diagnostic practices, in professional guidelines, in public debates online and at conferences, and in the homes of ­people experiencing surveillance. I participated in clinical lung CT conferences, where a pulmonologist and a radiologist, based on CT images, would decide on diagnostic strategies. I also participated in consultations about tissue changes with ­people offered surveillance. ­After t­ hese consultations, I arranged a telephone conversation with some of ­these patients; I could introduce my proj­ect and arrange for home visits and semi­structured interviews. The ­people I interviewed found it difficult to put the meaning and experiences of tissue changes into words and coherent narratives. Taking ­these inconsistencies seriously made me look deeper into the ambiguities, subtle implications, and conflicts of anticipating and wanting to detect cancer early. As has been noted by Mette Bech Risør and Nina Nissen (2018, 22), diagnostic categories and practices are increasingly fluid in the sense that they expand and have permeable and ambiguous bound­aries. This is also the case for cancer control and practices of early diagnosis and early detection. As I described in the introduction, in clinical or public health jargon, early diagnosis and early detection are used to designate two dif­fer­ent forms of control, targeting symptomatic or asymptomatic populations. As ­will become evident throughout this chapter, in daily clinical work and for p­ eople in surveillance, ­there is no clearcut differentiation

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between so-­called symptomatic diagnostics and asymptomatic testing such as screening. For instance, from one point of view the diagnostic practices of tissue changes are not screening b­ ecause, as a rule, p­ eople themselves approach their general practitioner with complaints related to the lungs or other organs. However, some pulmonary specialists emphasize how the investigations based on vague suspicions or incidental findings, which might also prompt surveillance, actually do become a form of screening (DLCG 2019). Instead, they advocate for systematic, national lung cancer screening, which the Danish health authorities do not currently endorse. Before ­going into the ethnographic details of uncertainty and certainty, I w ­ ill first situate my field in relation to the Danish welfare state and specific concerns about safety, security, and prioritization. This empirical setting points to how diagnostic acceleration, through expanding infrastructures of surveillance, not only affects temporal modes of being but also alters economic, spatial, and moral concerns and engagements.

Balancing Surveillance, Trust, and (Un)certainty in the Danish Welfare State As the Danish government emphasized recently, the “first priority” or foremost purpose of the Danish welfare state is to ensure “safety and security” (tryghed og sikkerhed). The politics of ensuring safety and security for Danish citizens often entail increased surveillance of threats. In everyday Danish terminology, surveillance is often translated into “being kept an eye on” (blive holdt øje med). Both the media and many Danes regard this idea of “being kept an eye on” as “a valued good,” which may reflect the notion of the state as a friendly and good neighbor, emphasizing a well-­intended and near relation ( Jenkins 2012). Likewise, when I talked to p­ eople in surveillance, many of them emphasized feeling safer or calmer when being kept an eye on. They explained that it gave them reassurance: if the tissue did change and develop further, somebody would notice, and mea­sures could be taken against cancer illness. In the attempt to ensure safety and security, the Danish welfare state cultivates and supports extended infrastructures that promote predictability and attempt to control uncertainty (Rosa 2020, 19). As noted by Steffen Jöhncke (2011) and Susanne Langer and Susanne Hojlund (2011), ­these include ­free education, ­free health care, and financial support when sick or unemployed. This is financed through a progressive re­distribution of wealth through taxation. In recent years, public finances have been fiercely debated in terms of how to spend common—­but scarce—­resources. The health care system, including cutbacks in hospital bud­gets, has been a key arena for this debate, with a declared po­liti­cal aim of “giving the Danes the most health for the money” (give danskerne mest sundhed for pengene). Within the health care system (as well as within education), efficiency is increasingly sought through strict time regimes. In the building of infrastructures such as



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health care, the emphasis on prioritization and expenditures has been accompanied by calls by health care professionals to acknowledge the devastating effects of cutbacks on the possibilities for care and treatment. At a conference on prioritization in the health care system held at the Danish Parliament in October 2018, the Danish Council on Ethics highlighted what they called “an unjust, opaque, and random” prioritization in the Danish health care system, where “treatment quality depends on the specific disease.” In the surrounding news coverage, cancer epitomized the example of a disease that was highly prioritized over many other serious diseases. The centrality of the health care system in ensuring safety and security points ­toward the orchestration of the Danish welfare state around means for managing uncertainty through expanding infrastructures. The proliferation of at-­risk states blends into this configuration of time, resources, and collective fears of illness. I suggest that it is in this light that p­ eople accept the surveillance of tissue changes with the diagnostic infrastructures of uncertainty and certainty. As suggested by Mary Douglas (2001), certainty is culturally mediated and something to establish institutionally by blocking doubt. Douglas explored how communities arrive at enough certainty to foster confidence in the proposed means of managing uncertainty. I suggest that this form of confidence is expressed as “trust” in the biomedical practices of keeping an eye on tissue changes in the welfare state. As an infrastructure, the surveillance regime moves p­ eople into the flow of continuous medical testing based on the potential of cancer, specifically materializing in the indeterminate tissue change. Thus, in the attempt to “diagnose cancer early,” uncertainty is always on the ­table, and it must be on the t­ able. It is the open space of interpretation that makes ­people move. However, sustaining and generating degrees of uncertainty come with the threat of mobilizing “too many” smaller complaints. This holds a threat of a pos­si­ ble breakdown of unboundedness, which is likely to make anything or anybody a potential object of medical surveillance in anticipation of a crisis (Adams, Murphy, and Clarke 2009). I suggest that ­these threats generate an institutional need for certainty and confidence in the form of “trust” in order to convince p­ eople that they actually need to be observed and that every­thing is u­ nder control. I w ­ ill explore the mobilizing and interdependent dimensions of uncertainty and certainty first by presenting a specific, yet typical, consultation.

Consultations of Uncertainty and Certainty In June  2019, Birgitte prepared a consultation with a sixty-­six-­year-­old w ­ oman, Lene, who had been in surveillance for twelve months. Birgitte explained to me that, ­after the first scan in June 2018, Lene had a CT scan six months ­later in January 2019. The more sensitive scan indicated that the detected tissue change seemed to have grown in size from four millimeters to six millimeters between the first scan in June 2018 and the second in January 2019. Nevertheless, in June 2019 the

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change had been stable; it was mea­sured to be the same six millimeters as in January. Birgitte prepared to offer Lene another scan in six months. As usual, Birgitte began the consultation by following the same “script” (Timmermans 2005, 1006) I had observed many times before. Birgitte steered the conversation through the pre­sen­ta­tion of the tissue change and the offer of surveillance, scripting how ­people could behave and what to expect. She talked about the tissue’s trajectory so far and the characteristics of the change, focusing on size and location, and noting that the change was small. Birgitte was trying to guide Lene “not to worry”; she then suggested a plan for surveillance, which adhered to the guideline and had been agreed on between a radiologist and a pulmonary specialist at the lung CT conference. Thus, Birgitte implied that the tissue change was “­under control.” “Right now, we want to keep an eye on the change,” Birgitte explained. “If it then stays the same one more time, we might push a ­little to the interval and perhaps give it a year instead of six months. If that is OK with you?” “Yes, of course,” Lene replied. “That w ­ ill be nice [rart]. But this more dense area [fortætninger], what is it?” “Well, we d­ on’t know for sure. It’s presumably scar tissue, prob­ably benign, from infections ­you’ve had before. Many, many ­people have t­ hese changes, and we c­ an’t always give an explanation,” Birgitte answered.

Lene then told Birgitte that she was a former smoker, and Birgitte explained that smoking certainly gave Lene an elevated risk of lung cancer. However, Lene, like every­one ­else, exposed herself to all kinds of particles in the air she breathed, some of which her lungs would not be able to get rid of. When smoking, Lene had exposed herself to more. Birgitte then continued, “As time goes by, we develop changes. We get wrinkles on the skin, and our hair turns grey. ­After age twenty-­five, it goes downhill. You cannot yourself keep an eye on the change as you would with a mole. Therefore, we offer to follow it for you. You ­shouldn’t expect it to dis­appear, but we ­don’t want to see it grow. This is why we offer surveillance.” “What if it grows?” Lene asked. “What can it then be? Cancer?” “Yes,” Birgitte answered, “then we would suspect cancer. E ­ very cancer has, at some point, been very small.”

For many ­people, the image of cancer connotes dreadful, horrifying ­futures of suffering with uncontrollable growth ( Jain 2013). Cancers can be big and, through metastasis, gain a systemic presence in the body. Thus, the relation between tissue change, growth, and the risk of developing cancer underscores the ­whole conversation: the bigger and more pre­sent the change, the closer one comes to death. With certain thresholds, size also defines the surveillance intervals of the surveil-



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lance regime. Furthermore, Birgitte framed Lene’s pos­si­ble expectations through invoking the past of a life lived, with its inevitable and common illness episodes, as well as invoking the f­ uture of old age with expected physical decline. At the end of the conversation, Birgitte questioned Lene on how she felt physically and then reiterated the suggested plan. Birgitte said, “The ­thing we are following is very, very small—­you cannot feel it. But I believe we need to keep an eye on it, if you also want to?” Lene said, “I think we might as well do that, yes. You are the ones who know what is best.” Birgitte replied, “Yes, but it is your body [du lægger krop til]. But I also think you should. Sometimes we do find one that grows.” “I’m more comfortable when you watch it, and it i­sn’t something that worries me or that I think about,” Lene smilingly added as we shook hands for goodbye.

A routine consultation like this one would take about fifteen to thirty minutes, depending on ­whether it was the first or a subsequent consultation. A characteristic of ­these conversations is the balancing of and interdependence between uncertainty and certainty. Uncertainty and certainty come into being together when Birgitte is confident about the need for surveillance, and yet she accentuates the uncertainty about the properties of the tissue change. The nurse, Birgitte, represents the clear message that surveillance is impor­tant to keep an eye on the change over time. Time ­here mediates the certainty of surveillance, as the passing of time and the rhythm installed in the diagnostic infrastructure through time intervals may bring clarity ­either through growth or through stability. For Lene, the uncertainty of what the tissue change might be directly relates to the potential of it being cancer. This duality of (un)certainty is also reflected in the diagnostic infrastructure: if cancer was not culturally established as a risk (cf. Douglas [1992] 2003, 29), the surveillance regime would not exist. Tissue changes do not pose a pathological danger per se, and the subcentimeter tissue changes do no physical harm. They become potentially dangerous entities worthy of attention in association with an uncertain f­uture of potential cancer. As ele­ments in the diagnostic infrastructure, ­these uncertainties drive attempts ­toward further clarity (Frumer et al. 2021). Furthermore, Lene also probes about the aspect of smoking, which seems to destabilize her confidence in the tissue change not growing. Birgitte acknowledges this uncertainty, especially concerning growth, and that not all changes are “explainable.” The dreadful anticipation of cancer ­here again mediates uncertainty ­because “all cancers have at some point been very small.” ­After the consultation, Birgitte shared some of her thoughts with me. “Why does this spot grow? And why has it been stable for the past six months? Of course, at some point in time, it has to grow. It ­isn’t just ­there, pling, all of sudden, six millimeters in size,” Birgitte said, then paused. “But we actually ­don’t know. When is

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it that we catch it? While growing? Has it just de­cided that it wants to be six millimeters and then it stops at that size?” As I ­w ill elaborate in the next section, the way that ­people at the clinics cannot know at what size a tissue change ­w ill show up in a scan—­what they w ­ ill “actually find,” as they say—is a key effect of the shrinking pre­sent and the ways that experiences and expectations become transient. However, the acknowl­edgment of the lack of certainty does not seem to imply that ­people doubt the abilities of the biomedical setup to manage the potential of cancer. Instead, it becomes a starting point for generating conviction and trust. The uncertainty of smoking transforms into a question about stratifying p­ eople into risk groups. The uncertainty of growth molds into questions about the inevitable development of wrinkles and grey hair. It molds into questions of old age and the common and often benign signs of a long life lived. A sense of certainty about the practices of surveillance is thus generated by balancing enough uncertainty and openness in the outcome to motivate surveillance, and enough confidence to convince that this is not serious (at the moment, cancer is not expected) and that it does not need additional testing (besides the regular CT scan). Lene helps on this part by acknowledging the expertise of biomedicine and her trust in it: “you know best.” By being observed, she feels “more comfortable,” encouraging a sense of safety and security through the possibility of timely care. P ­ eople in surveillance often explained that it was reassuring that someone would “see it through” (følge det til dørs) and “be ready if something came up” (der står nogen klar, hvis der er noget). Within the diagnostic infrastructure, ­these balancing acts of degrees of uncertainty and certainty are further underpinned by profound temporal structures that affect the experiences of bodies and the pre­sent.

Bodies in a Contracting Pre­sent Hartmut Rosa (2013) has suggested that the temporal patterns of con­temporary modern life are defined by acceleration or continuing change. Drawing on the concept of “the contraction of the pre­sent” (Lübbe 2009), Rosa specifically points to the fact that the acceleration of social change entails an increase in contingency and a pre­sent that becomes more transient (Rosa 2013, 76–77). Accordingly, the experience of what we knew (the past) and what we do not yet know (the f­ uture) is ­under constant transformation. Yesterday’s experiences have become obsolete (­today’s scan may show something other than yesterday’s scan), and tomorrow may not be predicted (only a f­ uture scan can tell the f­ uture). The pre­sent, defined as a time when experiences and expectations converge and when certainty is felt, therefore shrinks. Experiences lose their reliability in anticipating the f­ uture—­and they do so by yet increasing rates of decay (Rosa 2013, 76, 301). The infrastructures of surveillance reflect this when potentialities and opportunities expand whereas the ­actual diminishes.



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Together, Birgitte and Lene try to manage this peculiar form of embodied temporality. In the conversation, they play out specific temporal rhythms that seem to make experiences and expectations become unreliable, thereby shrinking the pre­ sent. The past and the f­ uture are invoked at a general level. Birgitte suggests that, like all ­people near age seventy, Lene has already lived a rather long life with dif­fer­ent exposures and experiences along the way. In the same overall imagery, old age awaits Lene, with its expected physical decline. Nevertheless, the specific expectations for the ­future are not very precise. When Birgitte explains about the surveillance intervals and uses the phrasing “if the change stays the same,” it is exactly this form of unreliable f­uture expectations that she emphasizes. Moreover, the past similarly provides no clear explanation about what the tissue change is or why it has developed. Yet, in line with other forms of diagnostic practices, or what David Armstrong (1995) famously called “surveillance medicine,” the c­ auses of ­these tissue changes are of minor relevance as anything other than risk ­factors. Instead, Birgitte gives several general suggestions—­like wrinkles, gray hair, and moles—to signify decline, but no firm explanation is made. Importantly, the CT surveillance itself is justified through this unreliability of experience when Birgitte says, “You cannot yourself keep an eye on the change.” Through this dependence on ever more sophisticated forms of technology, the transience and unreliability of Lene’s own body and her sensations are enhanced. Thus, the use of the CT scanner partly shapes the diagnostic infrastructure as a condition of possibility and assists in contracting the pre­sent, understood as the time when Lene may feel certain that she does not have a cancer hiding within her body. I suggest that h­ ere it becomes clear how diagnostic acceleration has more than strictly temporal effects; it also includes a multilayered moral and spatial expansion. As the observed tissue changes exist beyond the threshold of ­human sensorial experience, p­ eople in surveillance do not experience any bodily sensations they may relate to the tissue change. The uncertainty of subcentimeter, indeterminate tissue changes detected by ever more fine-­graded CT scans and the lack of attributable sensations encourage the “watchful waiting” of biotechnologies. By accelerating diagnostics and trying to intervene “early,” surveillance of tissue changes defines “a cultural need” (Timmermans 2005, 1007) for biomedicine as a form of expertise needed to interpret both images and bodies. The tissue changes, ­people’s bodies, and the regular CT scans offer provisional and transient interpretations. At the moment, Lene does not have cancer, but even tomorrow she might; she cannot know before she is (re)scanned. The same goes for the experience of the past. When Birgitte asked ­people in surveillance ­whether they had had cancer before, some p­ eople answered, “No, not that I know of ” (ikke hvad jeg ved af) as if they ­were not quite sure w ­ hether they might have had cancer without noticing. The diagnostic infrastructure of surveillance cultivates, and yet tries to manage, this shrinking pre­sent imbued with degrees of uncertainty and certainty, fear of cancer suffering, and confidence in the welfare state’s practices of surveillance and biomedical forms of control.

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­After studying a road-­building proj­ect in Kyrgyzstan, Madeleine Reeves (2017) suggested that infrastructures have a “promissory quality: the prospect that the ­future might be more secure, more prosperous, or more peaceful than the pre­sent. It is this simultaneous gesturing t­ oward past and f­ uture that makes infrastructures sites of intense social and affective investment” (Reeves 2017, 717). As such, infrastructures encode collective forms of desire and fantasy as “the vehicles whereby ­those fantasies are transmitted and made emotionally real” (Larkin 2013, 333). I suggest that, in this temporal structure of f­ uture building and due to the shrinking pre­sent, the diagnostic infrastructure of surveillance anticipates cancer (Adams, Murphy, and Clarke 2009), but it also alludes to a desire for an almost cancer-­free ­future. The hopes and dreams of a f­ uture even more in control of cancer in contrast with the history of “poor survival rates” in Denmark compared with the other Nordic countries (Tørring, this volume); t­hese hopes are thus cultivated by the con­temporary time structures of cancer control as early and fast diagnosis and are activated in its diagnostic infrastructures. ­Because most of the p­ eople who participated in my proj­ect, and Danes in general, think of the welfare state as a trustworthy, ­great watcher—­a kind neighbor ( Jenkins 2012) who is helping you out—­the offer of surveillance becomes “a common good” and a reassuring gesture. Most ­people accept this gesture as a specific version of the biopolitics of safety and security and acknowledge the intimate relation it affords to biomedicine and the welfare state to avoid being “left alone.” Being left alone or overlooked echoes fears of being abandoned (perhaps in the waiting list) and missing out on the potential win­dow of opportunity to act against cancer. Consequently, the surveillance for tissue changes and the intimate relation to the welfare state are considered both disturbing and comforting. Nevertheless, not all p­ eople subscribe to this view on cancer control. As I have discussed elsewhere, the comfort comes with continuous existential and ethical concerns when being “in the meantime” (Frumer et al. 2021). Next I ­will describe a consultation with Peter, who rejected the offer of surveillance. His story brings out other aspects of the temporal and moral patterns in the diagnostic infrastructure of surveillance; it is a story about feeling trapped in diagnostic cycles and reacting against the push ­toward biomedical surveillance.

A “Diagnostic Mill” of Surveillance Sitting at her desk by the computer, Birgitte prepared for the next conversation with Peter, a sixty-­six-­year-­old man. Birgitte browsed Peter’s medical rec­ord, writing notes on a piece of paper and explaining his story to me. One year ago, Peter had been offered surveillance. However, at the first consultation with Birgitte, Peter postponed the repeated scan to twelve months, although the guideline recommended it a­ fter three months. Birgitte commented to me, “Luckily, t­here ­wasn’t anything,” implying that the change did not develop into cancer in the time between the scans. Peter strug­gled with chronic obstructive



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pulmonary disease (COPD) and still smoked at the time. On the CT images, his tissue change was still mea­sured to be around ten millimeters. According to the guidelines, he should be offered a surveillance scan ­after twelve months b­ ecause his change had already been stable for a year. ­After a year, if the change once again proved not to have grown, he would not be offered additional surveillance. Before bringing Peter in, Birgitte commented, “­We’ll see if he agrees to be part of it.” She paused and continued, “He ­will figure that out for himself.” ­After welcoming Peter and showing him to his seat in front of her desk, Birgitte reiterated Peter’s trajectory. Peter quickly commented, “Yes, you c­ ouldn’t r­eally understand what it was.” Birgitte agreed, but she emphasized that now “we are calmer” ­because the change had not grown during the surveillance period, even though “we still d­ on’t know what it is.” Quickly ­after this exchange, Peter interrupted Birgitte and said, “I ­don’t want to end in a ‘diagnostic mill’ [­undersøgelsesmølle] of investigations. I ­don’t like that.” Birgitte offered the plan of a twelve-­month scan and potential closure ­after that. She then directly asked Peter, “What do you want?” Peter firmly rejected the plan and summed up, “All right, then it stays that way ­unless I feel something [med mindre jeg mærker noget].” Birgitte responded, “If we look, we can always find something,” somehow showing empathy with Peter’s decision not to continue surveillance. Before letting Peter go, Birgitte asked him about feeling shortness of breath, which was the original complaint that had prompted the initial CT scan. Peter answered that it had not ­really become any better, but it had not gotten worse ­either. “I’m not getting any younger, you know,” he said. As a final note, Birgitte encouraged Peter to contact his own doctor “if anything would come up.” It seemed to me that the consultation with Peter had ended even before it had started and that Peter came into the consultation knowing what he wanted. He did not have any questions. When Birgitte told Peter that the change “was stable,” he did not show sustained interest in the uncertain properties of the tissue change. Instead, he stressed that his body was behaving as expected and framed his sensations as part of getting older. The emphasis on luck that Birgitte communicated to me before the consultation illustrates how expectations feel unreliable, imbued with fundamental unpredictability, as was also the case with Lene. However, for Peter something ­else was at stake. As described, he included the potential and ­actual sensations of his body as his grounds for rejecting surveillance, and he did so several times. He emphasized that he experienced his body behaving “as it used to,” with its regular coughing and shortness of breath, and that he was confident that he could interpret its signs so that he needed only to seek additional care if he would “feel something.” This seemed to counteract his perceived need for surveillance through the CT scan and its biomedical interpretation. ­After the consultation, Birgitte opened a win­dow to air out the cigarette smell, and she mused, “I like that phrasing, ‘diagnostic mill.’ That is what it is. When we look, we ­will find something. We are not pristine on the inside. Some ­people are

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stuck in this for 1½ years with new suspicions being raised all the time—­but they are not sick.” Then Birgitte turned back to me, and she concluded that, still, it was difficult to decide when to refuse ­these diagnostic cycles. Like Birgitte, I was also intrigued by Peter’s analogy of the mill. Peter seemed to suggest a diagnostic mill generating potential signs of disease, which would entail surveillance or further investigations. Through the investigations, signs are meta­phor­ically construed as “suspicions” in need of being “ruled out”; they are molded into new configurations, calling for additional or repeated investigations and adding yet new cycles of diagnostic work. It seems that the mill somehow enables activity without an end product. At least, it might end up giving no additional information to the p­ eople who are being surveilled: what is certain is that this tissue change w ­ ill prob­ably not develop further. However, other tissue changes ­w ill definitely come, due to age or smoking. Some of ­these ­w ill be detected—­some by coincidence—­and some ­will yield new cycles of investigations, which may (or may not) lead to a cancer diagnosis at some point and which may reduce suffering. Peter and Lene reacted very differently, but they also had diverse experiences. Peter seemed to insist that his bodily sensations could be explained by his continued smoking and his COPD. Being at risk of cancer is less of a surprise in this configuration. By contrast, Lene opened the potentially boundless space of at-­risk cancer. Additionally, she was a former smoker, having tried to minimize the adverse physical effects of smoking. Their situations gave rise to dif­fer­ent relations between uncertainty and certainty that steered the movement in specific ways. Importantly, both situations illustrate how uncertainty and certainty shape bodily and temporal reliabilities as necessary components of the diagnostic infrastructure of surveillance.

Concluding Discussion I have argued that the expanding diagnostic infrastructure of surveillance cultivates and thrives on uncertainty and certainty as mutually constitutive. The openness of interpretation and the fear of consequences move p­ eople, both affectively and concretely, into continuous CT surveillance. At the same time, the message for ­people in surveillance is that cancer is controllable by acting in “due time.” The fostered confidence becomes achievable through control as surveillance, through the surveillance regime. Uncertainty and certainty ­here make space for conflicting simultaneous expectations of what is to come, a cancer-­free ­future always anticipating cancer. ­These are the workings of at-­risk cancer. “Keeping an eye on it” thus implies a form of surveillance lingering around uncertainty and certainty, fear of cancer illness, and trust in the shape of confidence in biomedical surveillance. I have argued that ­people being observed continuously accept this both disturbing and comforting intimate social contract between bodies and the state, and they do so through allegories of the watchful,



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friendly welfare state having well-­faring and well-­caring intentions ( Jenkins 2012; Jöhncke 2011; Langer and Hojlund 2011). As explained by the p­ eople in surveillance, they feel comforted and reassured ­because “someone ­will catch it” if the tissue change starts to grow. Even though the clinicians cannot know ­whether the tissue change ­will develop, they can assure p­ eople they w ­ ill take care of it. On the injunctions of “early” cancer control, the detection of small, unspecific tissue changes is disturbing b­ ecause of its relation to cancer and death. In a sort of circular reference (Timmermans 2005), this disturbance then prompts a need for the comfort of extended surveillance. As has continuously been described in anthropological lit­er­a­ture on cancer control, this exemplifies that the responsibility for the outcome moves away from ­people in surveillance and t­ oward the state and biomedical means of control (Blomberg et al. 2009; Gibbon 2013; Heinsen, Wahlberg, and Petersen 2021; Svendsen 2006). The structured surveillance regime becomes an anchor in a sea of ambiguity. As Mary Douglas (2001) and more recently Hartmut Rosa (2020) have reminded us, this anchor thrives in socie­ties cultivating interdependence, stability, and uniformity. As a relatively small and affluent welfare state, the Danish state is still in a good position to enhance ­these aspects to foster confidence in the state and its proposed means of managing uncertainty. As I have described, we see it when the politics of the Danish welfare state prioritize safety and security, and we see it when ­people accept surveillance. For the majority of p­ eople in surveillance, however, the anchor comes at a cost: they must submit to the continuous ethical concern and the paradox of “keeping an eye on it” in the hope that a change ­will not develop without being found out. In other words, they must submit to the unending task of keeping an eye on “nothing” happening to prepare for early diagnosis and treatment if a cancer develops. Expanding on Rosa’s description of con­temporary temporal structures as defined by acceleration (Rosa 2013), I have argued that experiences of accelerated technological innovation and a shrinking pre­sent foster a perception of bodies as out of reach of sensorial interpretation. This tends to destabilize the interpretation of bodies-­in-­the-­present and to expand illness potentialities by making the stable interpretation of “a noncancerous body” an even more fleeting or provisional possibility. This was the case for Lene as well as most of my interlocutors. However, experiences of diagnostic surveillance may also generate reactions against this transience and unease and against biomedical control mea­sures, as suggested by Peter’s framing of surveillance as a “diagnostic mill.” Both of ­these cases suggest a shared experience of the mediating effects of diagnostic infrastructures and the changing relations between bodies, time, and clinical practice. In the accelerated attempt to control potential cancer, the continuous production of at-­risk populations and the notion of keeping an eye on it as a desirable, common good seem to expand ­toward increasingly wider fields of medical tasks and responsibilities of the Danish welfare state. Thus, compressing the experience of the pre­sent with accelerated strength holds the risk of r­ unning wild, imploding

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the health care system as well as ­people’s everyday lives. ­Here, the diagnostic infrastructure of surveillance and the intimate relation to the welfare state both result from and challenge the welfare state’s efforts to enhance safety and security. It raises the empirical question of ­whether surveillance of tissue changes adds to the welfare of ­people living in Denmark. Meanwhile, health care prac­ti­tion­ers together with at-­risk ­people are left to navigate and manage this unfamiliar and transient body and time, as p­ eople move through “the hallway” trying to stay out of “that end” of cancer diagnostics.

notes 1. ​Sundhedsdatastyrelsen, Danish Health Data Authority (2021), “Kræftoverlevelse i Danmark,”

https://­sundhedsdatastyrelsen​.­dk​/­da​/­tal​-­og​-­analyser​/­analyser​-­og​-­rapporter​/­sygdomme​-­og​ -­behandlinger​/­kraeft​/­kraeft​_­overlevelse. 2. ​In Danish, the specific surveillance scan is literally called a “control CT.” The term “control” has many associations in Denmark. For instance, ­people with so-­called chronic illness “go to controls” [gå til kontrol]. They “have control” (of a [potential] disease) and are “in control,” but they are also “­under control” [i kontrol] by ­others. Thus, it resonates with the notion of being “kept an eye on.” 3. ​Numbers from NORDCAN (2021), “The NORDCAN Proj­ect: Cancer Statistics for the Nordic Countries,” https://­www​-­dep​.­iarc​.­fr​/­nordcan​/­English​/­frame​.­asp. 4. ​Sundhedsstyrelsen, Danish Health Authority (2015), “Udvikling i brug af røntgenundersøgelser i Danmark—­med fokus på CT 2003–2014,” https://­www​.­sst​.­dk​/­​-­​/­media​/­Udgivelser​ /­2015​/­Udviklingen​-­i​-­brug​-­af​-­r%C3%B8ntgenunders%C3%B8gelser​-­i​-­Danmark​.­ashx. 5. ​The use of CT scanning to detect lung cancer continues to be debated at the local, national, and international levels. Questions concerning choices of modality and influencing sensitivity are coupled with public fears of overlooking cancer. They also include scientific debates on “overdiagnosis,” discussing both tendencies in practice to “overevaluate” tissue changes (offering more prolonged or more intense surveillance than recommended) and “overdetection” (that the detected tissue change w ­ ill not lead to lung cancer–­related suffering or death in the individual’s remaining lifetime) (cf. DLCG 2020).

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Carey, Matthew, and Morten Axel Pedersen. 2017. “Infrastructures of Certainty and Doubt.” Cambridge Journal of Anthropology 35 (2): 18–29. https://­doi​.­org​/­10​.­3167​/­cja​.­2017​.­350203. Danish Lung Cancer Group (DLCG). 2019. “Notat: Vedrørende brug af lavdosis CT ved mistanke om lungekræft.” https://­www​.­lungecancer​.d­ k​/­wp​-c­ ontent​/­uploads​/­2019​/­12​/V ­ edr​ -­brug​-­af​-­LD​-­CT​-­ved​-­mistanke​-­om​-­lungekr%C3%A6ft​-­udtalelse​-­fra​-­DLCGs​-­Bestyrelse​ -­Dec​.­​-­2019​.­pdf. —­—­—. 2020. “Klinisk retningslinje: Lungecancer—­visitation, diagnose, stadie.” Version 2.0. Revised June  2020. https://­www​.­lungecancer​.­dk​/­w p​-­content​/­uploads​/­2020​/­12​/­DLCG​ _­visitation​_d­ iagn​_­stadie​_­AdmGodk141220​.­pdf. Douglas, Mary. 2001. “Dealing with Uncertainty.” Ethical Perspectives 8 (3): 145–155. https://­doi​ .­org​/­10​.­2143​/­EP​.8­ ​.­3​.­583185. —­—­—. (1992) 2003. Risk and Blame: Essays in Cultural Theory. Reprint. London: Routledge. Forss, Anette, Carol Tishelman, Catarina Widmark, and Lisbeth Sachs. 2004. “­Women’s Experiences of Cervical Cellular Changes: an Unintentional Transition from Health to Liminality?” Sociology of Health and Illness 26 (3): 306–325. https://­doi​.­org​/­10​.­1111​/­j​.­1467​-­9566​.­2004​.­00392​.­x. Frumer, Michal, Rikke Sand Andersen, Peter Vedsted, and Sara M. H. Offersen. 2021. “ ‘In the Meantime’: Ordinary Life in Continuous Medical Testing for Lung Cancer.” Medicine Anthropology Theory 8 (2): Article 5085. https://­doi​.­org​/­10​.1­ 7157​/­mat​.8­ ​.2­ ​.­5085. Gibbon, Sahra. 2007. Breast Cancer Genes and the Gendering of Knowledge: Science and Citizenship in the Cultural Context of the “New” Ge­ne­tics. New York: Palgrave. —­—­—. 2013. “Ancestry, Temporality, and Potentiality: Engaging Cancer Ge­ne­tics in Southern Brazil.” Supplement, Current Anthropology 54 (S7): S107–­S117. https://­doi​.­org​/­10​.­1086​/6­ 71400. Gibbon, Sahra, and Carlos Novas. 2008. Biosocialities, Ge­ne­tics and the Social Sciences: Making Biologies and Identities. London: Routledge. Guldbrandt, Louise Mahncke, Torben Riis Rasmussen, Finn Rasmussen, and Peter Vedsted. 2014. “Implementing Direct Access to Low-­Dose Computed Tomography in General Practice: Method, Adaption and Outcome.” PLoS One 9 (11): e0112162. https://­doi​.­org​/­10​.­1371​ /­journal​.­pone​.0­ 112162. Heinsen, Laura Louise, Ayo Wahlberg, and Helle Vendel Petersen. 2021. “Surveillance Life and the Shaping of ‘Genet­ically at Risk’ Chronicities in Denmark.” Anthropology and Medicine 29 (1): 29–44. https://­doi​.­org​/­10​.­1080​/­13648470​.­2021​.­1893654. Hoffmann, Tammy C., and Chris Del Mar.  2015. “Patients’ Expectations of the Benefits and Harms of Treatments, Screening, and Tests: A Systematic Review.” JAMA Internal Medicine 175 (2): 274–286. https://­doi​.­org​/­10​.1­ 001​/­jamainternmed​.­2014​.­6016. Jain, Sarah S. Lochlann. 2013. Malignant: How Cancer Becomes Us. Berkeley: University of California Press. Jenkins, Richard. 2012. Being Danish: Paradoxes of Identity in Everyday Life. 2nd ed. Copenhagen: Museum Tusculanum. Jöhncke, Steffen. 2011. “Integrating Denmark: The Welfare State as a National(ist) Accomplishment.” In The Question of Integration: Immigration, Exclusion and the Danish Welfare State, edited by Karen Fog Olwig and Karsten Pærregaard, 30–53. Newcastle upon Tyne: Cambridge Scholars. Kaufman, Sharon R. 2015. Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line. Durham, NC: Duke University Press. Konrad, Monica. 2005. Narrating the New Predictive Ge­ne­tics: Ethics, Ethnography, and Science. Cambridge: Cambridge University Press. Langer, Susanne, and Susanne Hojlund. 2011. “An Anthropology of Welfare: Journeying t­ owards the Good Life.” Anthropology in Action 18 (3): 1–9. https://­doi​.o­ rg​/­10​.­3167​/­aia​.2­ 011​.1­ 80301. Larkin, Brian. 2013. “The Politics and Poetics of Infrastructure.” Annual Review of Anthropology 42 (1): 327–343. https://­doi​.­org​/­10​.­1146​/­annurev​-­anthro​-­092412​-­155522.

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8 • ­SILENT C ANCER VACCINE ENCOUNTERS Young ­Women’s Experiences with Suspected HPV Vaccine Adverse Reactions STI N E H AU BERG N I ELSEN

Introduction Dear Stine, Thank you for your mail. I do remember you. It’s exciting that ­you’re working with this subject, and I do want to help you in your proj­ect. However, I can only do so if you promise that my contributions w ­ on’t lead back to me, which is to say that my name must not appear anywhere. It’s not that I ­don’t stand by what I say. But I am very uncomfortable about ­going public with it ­because the debate about the HPV vaccine’s adverse reactions is extremely polarized and increasingly cruel. [. . .] Best regards, Lily1

When I met Lily in the spring of 2018, she told me that she did not want to disclose her experiences publicly b­ ecause she feared it might make her the involuntary voice of suspected h­ uman papillomavirus (HPV) vaccine adverse reactions. Having experienced firsthand how the debate about the HPV vaccine and its suspected adverse reactions had grown increasingly polarized and abusive, she preferred to keep anonymous or s­ ilent to avoid social repercussions. ­After receiving a vaccination against HPV infections in 2012 intended to prevent the cervical cancer caused by ­these infections, Lily developed fatigue, throat pain, hand cramps, and dizziness, among other symptoms. With only a temporal correspondence between her symptoms appearing and her HPV vaccination to go by, she 147

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initiated what would become almost a decade-­long pro­cess of seeking care. Whenever she brought up her suspicion that the HPV vaccine might have caused her condition, she was met with skepticism and ridicule from some medical professionals. To circumvent such encounters, Lily fell s­ ilent about the vaccine—­and she was not the only one, I discovered. Based on ethnographic fieldwork in Denmark that I conducted on and off between 2016 and 2020 in private homes and in clinics for ­people with suspected HPV vaccine adverse reactions, I explore in this chapter the lives of young ­women like Lily and the silence that has emerged as an integral part of their pain experiences.2 In defining ­these young ­women’s conditions as “suspected HPV vaccine adverse reactions,” I refer to the ­women’s own perceptions of their pain as potentially having been caused by the HPV vaccine and to the institutionally constructed category of ­people experiencing unexplained symptoms in a temporal correspondence to an HPV vaccination—­a category that justifies care seeking but remains somewhat elusive and contested (Hammer et al. 2016). Overall, I argue that ­these w ­ omen’s silences reflect an inherent tension in the Danish welfare society. By voicing doubts and suspicions about the HPV vaccine, the ­women not only compromise the immediate goal of securing high vaccination coverage but also compromise the long-­term protection of the population against HPV-­induced cancers due to the effect of what epidemiologists call “herd immunity.” The term carries a variety of meanings, but the most commonly used refers to a reduced risk of infection among unimmunized or unprotected individuals who live in a population with a sufficiently large proportion of immune individuals (Fine et al. 2011, 911). In general, protecting both o­ thers and ourselves constitutes a g­ reat motivation for public funding of vaccination. This is evident in the Danish context where state-­funded vaccination programs and con­temporary cancer control mea­sures are widely considered to be in the public interest. Regarding the HPV vaccination in par­tic­ul­ar, vaccination as cancer control taps into the current biopolitics of the Danish welfare state by promising population-­level protection against an anticipated cancer presence (Andersen, this volume; Foucault [1978] 1990; Rose 2007). Young w ­ omen bore the burden of this promise: they w ­ ere framed as being at risk of cervical cancer, so they w ­ ere the HPV vaccine’s primary target group. This was the backdrop of ­these w ­ omen’s reports of suspected adverse reactions to the vaccination; and their subsequent silences, I suggest, contain t­hese tensions. Their experiences imply that ­there is narrow space for raising doubts about a vaccine when the protection of the population against cancer is at stake.

“Contagious Cancer” When the first HPV vaccine, Gardasil, was marketed in 2006, the anticipation was im­mense ­because HPV infections constitute one of the most common sexually transmitted infections globally. In Denmark, for instance, it is estimated that



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around 80  ­percent of sexually active adults ­will be infected with HPV at some point during their lives (Rosendahl 2019). Although most HPV infections are harmless and clear on their own, ­others persist and may cause vari­ous cancers, of which cervical cancer is the most common (Okunade 2020). Globally, cervical cancer is the fourth most frequent form of cancer in w ­ omen, and so far more than eighty countries have introduced HPV vaccination programs (World Health Organ­ization 2018, 2021). In Denmark, ­there are approximately 370 annual cases of cervical cancer. Although the national cervical screening program, which covers all w ­ omen between the ages of twenty-­three and sixty-­four, has been celebrated for reducing cervical cancer mortality over the past several de­cades, it is estimated that around 100 ­women still die from the disease ­every year (Statens Serum Institut 2019). Furthermore, about 6,000 ­women undergo a cone biopsy yearly to prevent cancer progression ( Jensen 2021). In anticipation that the HPV vaccine would reduce ­these numbers significantly, it was made available through the Danish childhood vaccination program in 2009 to girls aged twelve to fifteen. Two temporary catchup programs made the vaccination available to w ­ omen born between 1985 and 1995, and participation was strongly encouraged by the Danish Cancer Society. The decision to include HPV vaccination in the Danish childhood vaccination program was in tune with the governmental focus on cancer control, which had intensified during the previous two de­cades in Denmark. With the aim of reducing or even averting the potential ramifications of the disease, the Danish government and health authorities defined the management of cancer as an urgent area of focus (Tørring, this volume), introducing policy changes to reor­ga­nize the health system and educate the public to recognize cancer signs and symptoms (Andersen 2017). Central to ­these changes was accelerated diagnostics, which rely on symptom awareness as the solution to diagnostic delays (Andersen 2017). The focus was placed on the early identification of cancer symptoms, public information campaigns, and regulations related to speeding up the diagnostic pro­cess and improving the standardization of treatment within the hospital setting (Vedsted and Olesen 2015). In this general atmosphere of cancer being treated as an acute condition, the HPV vaccine was regarded as the next big medical breakthrough: that is, cancer may be lurking everywhere—­you could even contract an infection that could cause it—­but now it is preventable through a ­simple prick of the skin. By its very characteristics, a vaccine transcends the idea that early detection is a prerequisite for controlling cancer. The HPV vaccine contained rather high hopes that cervical cancer could be preventable by the same strategy used against infectious diseases (Scheffler 2019, 230). Despite the promising nature of the HPV vaccine in preventing the high incidence of HPV infections and the dreaded disease of cervical cancer, the introduction of HPV vaccination in Denmark followed a twisted, turbulent path (the contours of which my colleagues and I have explored in depth elsewhere; see

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Nielsen et al. 2020). A ­ fter having been stable at approximately 80 ­percent of the targeted cohort (girls born between 1998 and 2000), cohort-­specific HPV vaccination coverage began to plummet in 2013 (Statens Serum Institut 2017). Between 2013 and 2015 dramatic stories ­were shared across national news and social media platforms about girls and young ­women who had been seemingly happy and healthy before their HPV vaccinations yet now ­were confined to a wheelchair or bed, who ­were unable to stay in school or sustain a job due to a variety of symptoms that had appeared a­fter their HPV vaccinations. Th ­ ese girls and young ­women experienced widespread pain, headaches, dizziness, fainting, fatigue, and cognitive dysfunctions (Danish Medicines Agency 2021). The controversy that would begin to surround the HPV vaccine was unusual for Denmark, where generally high levels of vaccination coverage have been the norm for de­cades; even the long-­standing concerns about the measles, mumps, and rubella vaccine causing autism had l­imited impact on Danish vaccination uptake (Berg 2020). The young ­women who ­were reporting suspected HPV vaccine adverse reactions thus received massive attention in the media and from the public, to which w ­ ere added case reports of similar conditions occurring in ­women in other countries ­after HPV vaccination (e.g., see Kinoshita et al. 2014; Palmieri et al. 2017; Simas et al. 2019). However, in stark contrast to the loudness of the attention they received, many of the ­women I met during my fieldwork had fallen ­silent. I set out to understand why.

Approaching Silences In general, the Danish health authorities recognize that vaccines, like all other medical products, can cause adverse reactions (Danish Health Authority 2019). Given that vaccines are approved regularly, one may deduce that if only a few individuals experience adverse reactions or if the adverse reactions are mild, the vaccine’s potential benefits are deemed worth the risk. In the fight against cancer, adverse reactions from HPV vaccination may thus be regarded as anticipated or calculated “collateral damage”: the cost (the risk of adverse reactions) currently does not outweigh the benefit (population protection against HPV-­induced cancers) of administering the vaccine. The silence of the w ­ omen who have had suspected adverse reactions reflects t­hese considerations, I argue. It cannot be understood as mere muting or, echoing Robin E. Sheriff, as the absence of po­liti­cal consciousness or knowledge within a specific subordinate group (2000, 127). Based on her ethnographic research on the customary silence surrounding the subject of racism in Brazil, Sheriff explored the idea of silence as “cultural censorship,” in that it “does not rely upon obvious and explicit forms of coercion or enforcement” (2000, 114). Rather than the total oppression of articulations (127), some silences are a means of upholding relational threads and maintaining social positions, much like the practice of concealment among cancer patients in Delhi (Banerjee 2020) and the practice of silence among the Western Apache (Basso



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1970). Dwaipayan Banerjee (2020) argues that his interlocutors in Delhi would conceal their cancer diagnosis to avoid social isolation from their well-­meaning yet prematurely mourning relatives (6–7). Among the Apache in Arizona, Keith Basso (1970) showed how silence can function as a means of managing pain, doubt, and unpredictability in a number of social contexts such as meeting strangers, courting, getting cussed at, and being with someone who is sad (227). Common to t­ hese decade-­spanning studies is their careful attention to the pragmatic purposes of silence; likewise, I stress the importance of considering the mechanisms that govern the uses of silence ( Jaworski 1993, 66) by focusing on how, where, and for what purpose silences are practiced. In this chapter I argue that, in embodying what could be interpreted as potential barriers to broad HPV vaccination coverage, the w ­ omen I met are subjected to stigma, which imposes on them deficits of trust and rationality, and which becomes a source of g­ reat social discomfort and pain (Goffman [1963] 1990). Their silence may, I suggest, be viewed as a kind of situational adjustment, in the sense that they practice silence in situations in which disclosing their suspicions about the HPV vaccine might involve discomfort or foreclose on the possibility of receiving care. This adjustment, which is at once both skilled and forced, is a way for t­hese w ­ omen to circumvent societal and institutional attempts to categorize them in certain ways—as antivaxxers or hypochondriacs, for instance—­while taking into consideration the protection of the broader collective and their positions and perceived responsibilities within it. What follows is thus my attempt to lay bare the forms of vulnerabilities that emerged in the context of the Danish welfare society when doubts about the HPV vaccine ­were articulated and problematized. I ­will highlight how the relations that exist between the individual, the population, and the state are contractual in nature, bringing together the virtues of both individualism and conformity (see Gullestad 1989) on which the technologies of welfare, cancer prevention, and vaccination greatly depend.

A Crisis Emerges Around 2013 when HPV vaccination uptake began to decline in Denmark, Lily was in her mid-­twenties and studying at university. She was talking to one of her professors about studying for a doctorate, and in the eve­nings she was learning Chinese at a nearby school. She was determined. “She was ­really on her way,” Lily’s ­mother, Rita, told me with the tormented sense of pride that only a parent can muster. When I met Lily and Rita in their home in 2018, Lily had postponed her dreams of finding her own apartment b­ ecause she no longer could take care of herself. When I asked Lily what had happened, she told me that her prob­lems had started in the winter of 2012, and that she had approached her general practitioner (GP), Paul, shortly ­after. She explained,

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I tell him [her GP] that I’m absolutely exhausted, I’ve got influenza, I’ve got a throat infection, and my entire body hurts. [. . .] He runs some blood tests and tells me that nothing is wrong. He c­ an’t find anything and says that we should just let some time pass, that t­ here could be lots of dif­fer­ent reasons. “Busy at school,” for instance. [Lily laughs quietly.] But I ­wasn’t busier than usual.

Lily’s condition continued to decline, and one weekend she ended up in the hospital b­ ecause her throat was so blocked that she could barely speak. The doctors ­were convinced that she had glandular fever, a highly contagious viral infection, and told her to stay home so she would not infect ­others. Concurrently, something started happening to Lily’s hands. She would wake up in the m ­ iddle of the night b­ ecause her fin­gers had clenched into tight fists. Initially, it was the right hand, but soon the left followed. “When I woke up, I could see it, and I stretched them out again and thought this was weird, that I must have been lying in a wrong position,” Lily told me. However, it happened more frequently, and soon it became difficult for Lily to type on a computer or hold a briefcase. Meanwhile, Lily’s fatigue got worse, and more pains appeared. Lily also regularly experienced sensory disturbances, such as a feeling of ­water ­running down her arms and legs. A spot appeared in front of her eye, so she could not see very well. Fi­nally, almost a year ­after her initial attempt to get help, Lily returned to her GP, Paul. “I just ­couldn’t ­handle it anymore,” she told me. Paul sent her to be examined for multiple sclerosis, which is a long-­term, autoimmune disease that attacks the central ner­vous system, affecting the brain, spinal cord, and optic nerves. It is impossible to predict how the disease ­will pro­gress in an individual; mild symptoms include tingling and numbness whereas severe cases involve vision loss and paralysis. No longer fearing that her body had an infection that could put o­ thers at risk, Lily now feared that her body had started to attack itself, slowly breaking down its own nerve cells. Lily and her parents lived with the fear for weeks before the phone call came on the night of December 23 while they w ­ ere ­running some last-­minute Christmas errands. Rita, who still tears up when she tells the story, described the situation: We got the message the day before Christmas Eve. That it prob­ably ­wasn’t multiple sclerosis. I’ll never forget it. It was just such a relief. [. . .] Do you remember? [Rita asked Lily.] He [Lily’s GP] called you while we w ­ ere at the bank, and I just stood in the entrance hall and wailed.

Rita is always with us when I meet with Lily b­ ecause Lily’s voice sometimes can become so hoarse that she cannot speak very well. When Lily cannot articulate a word or finish a sentence, Rita w ­ ill help her. When Lily wants to rinse her throat, Rita ­will help her to lift her ­bottle of ­water b­ ecause it is difficult for Lily due to her clenched fin­gers. The ­bottle always contains a straw so Lily can drink from it



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without assistance. For several months ­after her treatments, which involve injections with a nerve-­relaxing drug, Lily’s voice would be smoother and not so trembling, and her hands would be more flexible, enabling her to stretch them out a bit. Lily always illustrated this by using her right hand to stretch out her left hand a ­couple of centimeters. However, the effects of the treatment ­were temporary, and the physicians who administer it to Lily are not sure about its long-­term effects. With the fear of multiple sclerosis ended and in the absence of any other pos­si­ ble explanations, Lily was referred to dif­fer­ent hospital wards, specialists, and tests. In one ward, Lily’s hands w ­ ere examined as perhaps a sign of a rare muscle disorder, but her throat pain could not be explained. In another ward, Lily’s fatigue and joint pains ­were thought to be signs of arthritis, but her cramping hands ­were less impor­tant—­perhaps a variation of a more familiar symptom like stiffening joints. In yet another ward, her joint pains ­were examined as perhaps signs of several dif­fer­ent bone diseases; her fatigue was explained as a general stress condition caused by pressure at school—­quite normal for a young ­woman studying at a higher education level, she was told. For each new ward, specialist, and test, aspects of her bodily sensations w ­ ere transformed—­sometimes into background information, sometimes into symptoms to be further investigated, and sometimes into mere features of everyday life. Throughout this ordeal, Lily never considered the possibility that her pain might be related to the HPV vaccine u­ ntil a doctor asked her if she had been traveling out of the country recently or had had any vaccinations. Lily elaborated: “I’d never considered it before. Never. I h­ adn’t heard anything about the HPV vaccine. [. . .] She [the doctor] told me that we had to report it, t­ hese symptoms. B ­ ecause we should suspect the vaccine.” Although Lily was skeptical about the doctor’s insinuation, she went through her medical file and discovered a pattern in her care seeking: she had started seeking care within a c­ ouple of months a­ fter her first dose of the HPV vaccine, and her vari­ous symptoms had intensified ­after the second.3 The fatigue had come first, the throat pain next, and then her hands had started cramping and fi­nally closed into fists. Despite the temporal correspondence, Lily had still not been convinced that the HPV vaccine was to blame for her condition. While Lily was making her discoveries, the cohort-­specific HPV vaccine coverage dropped in Denmark from 70 ­percent in 2013 (i.e., for girls born in 2001) to a low of 32 ­percent in 2015 (for girls born in 2003) (Statens Serum Institut 2017). Si­mul­ta­neously, the number of reports of suspected HPV vaccine adverse reactions increased significantly, and young w ­ omen began to step forward to share their stories in the Danish media. In April 2013, for instance, a national newspaper reported the story of thirteen-­year-­old Simone, who had started experiencing severe headaches and dizziness a­ fter her HPV vaccination. In the article “Frustrated Parents: HPV Vaccine Has Made Our ­Daughter’s Life Hell,” Simone’s ­mother told the story of an other­wise happy and healthy young girl whose condition had become so severe that she was forced to drop out of school (Sheikh 2013, my translation).

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More stories about the dangers of the HPV vaccine followed. In March 2015, the documentary The Vaccinated Girls aired on national tele­vi­sion and brought public attention to a climax. The documentary portrayed a group of young ­women who suffered from what they believed ­were HPV vaccine adverse reactions. It also exposed official documents that supposedly proved how Danish health authorities had failed to prioritize an investigation based on the observations of a group of doctors that an increasing number of their patients w ­ ere experiencing similar symptoms ­after their HPV vaccinations. Shortly ­after the documentary aired, it was widely criticized for giving an un­balanced impression that suspected HPV vaccine adverse reactions ­were prevalent, feeding into a national—­and worldwide—­debate about journalistic integrity and misinformation. Nevertheless, in June 2015, only a ­couple of months ­after the documentary had aired, Danish health authorities acknowledged the seemingly accelerating prob­ lem of suspected HPV vaccine adverse reactions. Regional HPV clinics ­were set up to care for t­ hese young w ­ omen. In the following section, I pre­sent some of my findings from fieldwork in ­these clinics before I elaborate on the experiences of Lily and the other ­women I met t­ here.

Containment The institutional initiative of regional HPV clinics was commenced by Danish Regions. Danish Regions, which is the body responsible for organ­izing and managing the Danish hospital sector, implemented the clinics to examine and treat ­people with unexplained symptoms occurring in temporal correspondence to an HPV vaccination. I initiated fieldwork in two of ­these clinics in 2016, where I observed consultations and follow-­ups, participated in rehabilitation classes, and talked to health care professionals as well as the w ­ omen referred ­there and their relatives. By June 2016, more than 2,000 patients had been referred to the HPV clinics (Danish Regions 2016), but a drastic decrease in referred patients ensued thereafter. By 2017 and 2018 the HPV clinics had more or less ceased to exist; the patients with suspected HPV vaccine adverse reactions are now directed into other therapeutic settings such as the Center for Complex Symptoms in Copenhagen and the Research Clinic for Functional Disorders in Aarhus. In retrospect, the HPV clinics seem to have been a rather hastily improvised initiative—­a clear sign of how the HPV vaccine program reconfigured into a policy and care field in Denmark from 2015 onward. Still, the clinics ­were meant to be a solution to a growing prob­lem. They made it pos­si­ble for GPs to refer their patients with vari­ous symptoms to a single care fa­cil­it­y instead of having them move between their practices and dif­fer­ent medical specialists. The Danish Health Authority explicated this feature when they recommended the clinics be restructured within the broader initiative called “One Entrance” (En indgang) in 2016 (Danish Health Authority 2016). The initiative centered on assigning each patient referred to the clinics a case man­ag­er to coordinate her care trajectory. With that,



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the clinics bypassed the Danish health care system’s characteristic “gatekeeper system” (Andersen et al. 2011, 145), which requires that patients return to their GPs for each second care referral. During my fieldwork in the clinics, I spent months observing the health care professionals who worked ­there, who despite fundamental uncertainties cared for their patients and did their best to alleviate their pain. If their patients w ­ ere suffering from headaches, they would send them to a hospital ward specializing in headaches; if patients w ­ ere having prob­lems with extending their sick leave, they would write in their medical files that they w ­ ere unable to sustain full-­time jobs at the pre­sent. In other words, their care practices demanded continuous tinkering (Mol 2008; Mol et  al. 2010) and crossed many borders internally within hospitals and across institutions of the welfare society. My overall impression from talking to ­women referred to the HPV clinics was that they appreciated the help they received. Many of them w ­ ere relieved to fi­nally have a single physician oversee their care even if they commonly received no further explanations for their symptoms. During ­these many conversations, I became increasingly interested in the ­women’s hesitancy to speak openly about their symptoms. Having read and seen portrayals of ­women with suspected HPV vaccine adverse reactions in the media, it seemed to me a ­great paradox that so many of them had fallen ­silent. Obviously, Lily quickly drew my attention to the inherent vulnerabilities of g­ oing public with suspicions and doubts about the HPV vaccine possibly causing serious adverse reactions, so I was not surprised when I encountered other ­women who voiced the same hesitancy. Still, I was genuinely astonished to discover the extent of their reluctance to disclose their suspicions about the HPV vaccine. Although most of the ­women ­were willing to share their experiences and suspicions with me (subject to anonymity), they refrained from disclosing the full extent of their pain to new physicians and even to close friends and ­family. Silence, I came to learn, infused many corners of their lives.

Becoming ­Silent Lily, having discovered by ­going through her medical file that her symptoms had appeared soon a­ fter her HPV vaccination, would ask each new physician or specialist she saw if they knew of other cases involving the vaccine. When she did this, however, she was generally ignored or even confronted with ridicule and contemptuous laughter by doctors who found her suspicions unwarranted. Sadly, she was not alone in experiencing this. Susan, whom I met in 2016 when she was in her early twenties, fell ill shortly ­after her HPV vaccination. She suffered from severe dizziness, which often led her to collapse, and she told me similar stories of encountering ­great skepticism when she mentioned her suspicions about the HPV vaccine: When I go to the hospital or indeed anywhere e­ lse, they ask me what’s wrong and what it could be. When I mention that t­ here is this suspicion about HPV symptoms,

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well, they sort of shake their heads. Some of them even stood ­there laughing at me, and said, well yeah, most young girls come in and say that at the moment.

Susan did not expect to be met with what she found to be an almost hostile approach in the Danish health system. Like Lily, she had been introduced to the pos­si­ble link by a health care professional and discovered that her dizziness had appeared not long ­after her HPV vaccination by looking through her school contact book, which she had handed in at school ­after a sick day. Other ­women explained that they themselves or a ­family member had read or seen something about the vaccine in the news and that they had made the link soon ­after, similar to Lily and Susan. Echoing their experiences, Emma—­who fell ill when she was in her twenties ­after her HPV vaccination—­also experienced massive re­sis­tance within the Danish health system when it came to acknowledging a pos­si­ble link between the HPV vaccine and her severe fatigue and chronic headaches. She explained, It’s like the doctors sometimes take it personally [when I mention the HPV vaccine], and I actually find that a bit strange. But they are sort of “Okay, I come from the medical world, and we think this vaccine is the greatest ­thing ever,” and so they feel attacked in their professional something, yeah.

Having experienced repeatedly that the mere mention of the HPV vaccine placed her in a position of vulnerability when the ­people on whom she relied for support and care became hostile ­toward her, Emma theorized that medical professionals heard her doubts as criticism, as though she, by merely mentioning that the HPV vaccine might be to blame for her own pain, was inadvertently blaming them as well—as promoters of vaccination and biomedicine. This greatly affected the way she approached the Danish health system, she told me: It’s been a very messy pro­cess. [. . .] I feel like I’ve encountered a lot of re­sis­tance in the health system. The first time I thought, okay it could be the [HPV] vaccine, and I brought it up . . . ​well, you quickly learn that you definitely s­ houldn’t say that. If you want any chance at all of being acknowledged and properly examined, you ­can’t mention the vaccine. B ­ ecause ­people w ­ ill completely shut down for some reason, and then ­you’re told that ­you’re an antivaxxer or something. [Emma laughs.] Or that it certainly i­ sn’t that.

Emma often had a feeling of “­running her head into a brick wall,” and it was not only in clinical settings that she met re­sis­tance. Emma recalled a social event with her neighbors where she had shared that she had fallen ill a­ fter her HPV vaccination; in response, one of her neighbors had derisively commented, “Yeah, well, some ­people claim that.” When Emma told me this story, she emphasized that it had happened early on a­ fter she had just discovered a temporal correspondence



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between her symptoms and her vaccination—­before she had learned “that you do not say anything [about the vaccine].” ­After ­these encounters with skepticism, Emma became s­ ilent about her suspicions about the HPV vaccine b­ ecause she did not want the skepticism and stigmatizing labels to follow her. Experiencing that the mere mention of the vaccine made her unpop­ul­ ar in certain social settings and with certain medical professionals who managed her care, she opted to stay ­silent. Similarly, Lily and Rita told me that when they mentioned the HPV vaccine in medical consultations, they experienced what felt like deep, almost accusatory condemnation. When this happened in consultations with medical specialists or with their GP of almost thirty years, it made them hesitant to mention the vaccine at all. “We’ve been laughed at so many times and looked at as if ­we’re crazy,” Lily told me, and Rita added, ­ ere was this one doctor who actually listened to us without laughing or shaking Th her head. She even agreed that the timing was suspicious. But when we asked her to write it in Lily’s file, she exclaimed, “Oh no, I would never say it outside this room.” So we never mention the [HPV] vaccine anymore, other­wise they ­won’t take us seriously.

Rita’s story makes clear how the silences I am exploring in this chapter are not easily confined to a par­tic­ul­ ar “subordinate group” (Sheriff 2000, 115). They infuse not only the practices of ­women with suspected HPV vaccine adverse reactions but also the practices of the p­ eople attempting to care for them. Some health care professionals ­were willing to talk about a pos­si­ble link between Lily’s experiences and her HPV vaccination—­but only within the confines of their offices or the private context of her home. Talking to the health care professionals in the HPV clinics, I learned that refraining from mentioning the HPV vaccine enabled them to accept the uncertainties of their patients’ conditions. In emphasizing the uncertainties—­and the lack of an established cause—­they w ­ ere able to keep open the possibility that the HPV vaccine could have caused their patients’ symptoms; and with that, they could uphold their care relations with them (Nielsen 2022). Yet, as Banerjee showed in his study of cancer patients in urban Delhi (2020), even good intentions and well-­meaning actions may inflict psychological damage on p­ eople in vulnerable situations. This becomes clear from the experiences of the ­women I met, who refrained from mentioning their doubts and suspicions about the vaccine causing their symptoms for fear of ­people dismissing them, in both clinical and private settings.

Intimate Silences The sense of concealment to avoid the pos­si­ble ramifications of disclosure, which infused the clinical encounters I observed and which the ­women told me about,

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spilled over into the ­women’s personal relations. Echoing the findings of Tina Sørensen and Pernille Tanggaard Andersen (2016), who have explored qualitatively the experiences of a group of ­women with suspected HPV vaccine adverse reactions and reported on their practices of social withdrawal, my interlocutors’ silences transcended the ways in which they sought health care and made them withdraw from private events as well. This became evident when I asked Susan how she talked to her friends about her condition, and she told me that only a few of her close friends knew about it. She elaborated, Or actually, they know, yes, but they ­don’t ­really know what it’s like when it’s at its worst. They know I sometimes collapse and faint, they know I have days when I’m so dizzy . . . ​but I ­don’t think they know just how frustrated I am. How much I actually had to give up on and how much it’s changed me as a person.

Susan had only recently confided in her boyfriend about how severe her condition was, even though they lived together. She was hesitant due to the skepticism she had encountered, and she had been relieved to find that he still supported her unconditionally. When I asked Susan why she found it so difficult to talk to ­people around her about her situation, she told me that she feared their reactions—­she was genuinely anxious that they might write her off ­because of her previous experiences with doctors ridiculing or laughing at her for suspecting the vaccine. During Susan’s care seeking, a par­tic­ul­ ar comment was made to her over and over, she recalled: “You prob­ably just need to see a psychologist.” But Susan had seen several psychologists and therapists; none had been able to help with her symptoms. From such comments and encounters, Susan grew more and more anxious about sharing her suspicions, which resonated with Lily, Emma, and many of the other ­women I met during fieldwork. Overall, it seems that the experiences of suspected HPV vaccine adverse reactions position ­these w ­ omen in uncertain situations, in which they, by virtue of their manifest but unexplained symptoms, fail to meet the established diagnostic criteria and to gain the legitimacy that is supposed to follow. Furthermore, by implicating the HPV vaccine, they impose on the established system—­dominated by a biomedical logic that promotes cancer prevention mea­sures and vaccination—­ these dangerous doubts capable of upsetting the balance between the perceived benefits and risks of the vaccine. They come to embody pos­si­ble obstacles in the fight against cancer. However, having met several of the health care professionals who attempt to balance caring for their patients and protecting the potential efficacy of the HPV vaccine, I do not suggest that t­ hese w ­ omen’s turns to silence are best understood only as a result of their encounters with skepticism. Rather, I suggest that we should understand their silences as a pro­cess of complying and resisting—or (in short) of situational adjustment. This adjustment is at once skilled, illustrating the expertise the ­women attain in navigating the health system and their social worlds,



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and forced, revealing the inherent power relations between health care professionals and their patients and between the state and its citizens, where the latter depend greatly on the former for care and legitimacy. I elaborate on this in the next section.

Silence as Situational Adjustment By introducing a connection between cervical cancer and a sexually transmitted infection, the HPV vaccine carries with it not only a reminder of the risky potentiality of a “contagious cancer” but also the anticipation of effectively preventing it. It also contains a moral incentive: by protecting ourselves from HPV infections we are also protecting the population. Thanks to this combination of individual and collective goals, the state, as the guardian of the public good, provides incentives to accept vaccinations by subsidizing vaccination programs and issuing national recommendations and guidelines. It is within and from this contractual relationship between the Danish welfare state and its citizens that the silences of the young ­women in this study take shape, I argue. As many of ­these ­women pointed out to me, they ­were only in this situation ­because they had chosen to accept the HPV vaccination: “Of course she was vaccinated, like all responsible girls,” Lily’s ­mother Rita told me. “She has all her vaccinations, and so do John [her husband] and I.” Rita thus echoed the findings of anthropologist Beth Elverdam (2011) that vaccinations in general are perceived as beneficial in Denmark. That in some ways, Danes are disciplined to accept vaccinations—­presumably owing to a long tradition of state-­initiated immunization (Elverdam 2011, 348). As Rita’s comment alludes, Danes still have a general sense of trust in the technology of vaccines and in the Danish welfare state. The ­women attending the HPV clinics consciously accepted the premise of vaccines, which, as a par­tic­u­lar health care technology, entails the implicit ac­cep­tance of individual risk in return for herd protection. They also trusted state officials to make specific judgements related to this technology on behalf of citizens and to help them should they fall ill. This general sense of trust is an impor­tant ele­ment in understanding ­these ­women’s turns to silence. It reflects the relation between the individual and the state in Denmark, which has been described as “a mutual moral relation with inherent rights and responsibilities” (Offersen et al. 2017, 7). ­These inherent rights and responsibilities become particularly clear in the normative expectations that emerge when exploring the introduction of the HPV vaccine and the experiences of ­women who have had suspected adverse reactions. The Danish state exhibits a certain governmental rationality, expressing a supportive yet regulating role by funding HPV vaccinations for girls and young ­women through both permanent and temporary vaccination programs and placing the a­ ctual responsibility of receiving the vaccine on parents and the young ­women themselves (see Connell and Hunt 2010). Within this rationality, HPV

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vaccination becomes a way of controlling an unpredictable and potentially cancerous ­future, so the state anticipates its citizens ­will pursue it. The ­women’s symptoms are thus not only contested and lacking the legitimating powers of a diagnostic code—­and hence the established kinds of care that follow (Dumit 2006, 587)—­but also pose a threat to the established system. They hinder herd immunity against HPV-­induced cancers and could collapse the entire vaccination program by reducing the trust between the state and its citizens that it requires. To understand why this has made them s­ ilent, Erving Goffman’s ideas of stigma and interactional discomfort ([1963] 1990) might help us articulate the effects of the discrediting that the ­women have experienced. Lily, Emma, and Susan encountered g­ reat skepticism both within and outside the health system when they voiced their suspicions about the HPV vaccine. According to Emma, it quickly became clear to her that disclosing her suspicions about the HPV vaccine entailed discomfort in interactions and risks of poor care. In addition, the stigma that makes disclosure a risk for t­ hese ­women entails characterizations of deficits of trust on their part. They find themselves involuntarily cast as vaccine doubters or instigators of doubt, despite the inherent paradox of them only being in their unfortunate situations b­ ecause they accepted the HPV vaccination as recommended by the state. If we wish to understand t­ hese ­women’s silences, we need to understand this: they feel as though they kept their side of “the contract” by accepting HPV vaccination “like all responsible girls.” However, instead of encountering a system and a society that recognized them and their distress, they received no support or acknowl­edgment in return for having accepted a certain amount of individual risk for helping to protect other p­ eople. On the contrary, they felt blamed for casting doubt about a cancer vaccine and for creating divisions in the Danish public, which needed to be mended for unity to be restored. To this end, they fell ­silent. This indicates that disclosure—­the act of telling, narrating, revealing—is central to how we establish and maintain relations, including clinical relations, but disclosure also involves the risk of certain sanctions, such as pos­si­ble rejection, discriminatory actions, or physical vio­lence (Manderson 2014). Hence, ­people employ complicated strategies to suppress disclosure—­w ithholding knowledge and silencing private facts (Manderson 2014, 3, 5). We see this in the ­women’s accounts of how staying s­ ilent about their suspicions minimized the risk of encountering stigmatization and dismissal. Silence became a way for them to uphold relations, to be taken seriously, and to consequently receive care and acknowl­edgment. The ­women’s silence thus reflects a certain level of expertise, which they gained from traveling around the Danish health system; at the same time it illustrates how the society seeks to remove specific kinds of suffering from public discourse to maintain order. What I am suggesting is that the silence of ­these ­women can be interpreted as an ongoing situational adjustment. That is, they made adjustments to certain situations in which they had found themselves to be placed in vulnerable positions. In



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some situations they w ­ ere obviously treated dismissively, like the situations where doctors laughed and shook their heads at Susan and Lily. In other situations their treatment was more vague and dependent on tacit understandings of cultural and social conditions, such as the doctor who did not want to rec­ord in Lily’s medical file the suspicion the HPV vaccine might have caused her symptoms, or the neighbor who subtly derided Emma’s suspicions. From such encounters ­these w ­ omen’s silences took form, so they must be viewed as both situational and relational, reflecting acts of consideration regarding the broader collective and their social worlds, including their positions and responsibilities within ­these (cf. Banerjee 2020), and acts of compliance that enable them to access care and legitimacy. Viewing them as such reveals how silence, much like the act of disclosure, has a social life: it is upheld in and by social relations (Sheriff 2000), and it is not simply chosen as a strategic response. Without the stigmatizing experiences, the w ­ omen would presumably not have become ­silent, which is why I argue that their silence is illustrative of the subtle presence of the judges of normality (Foucault 1977). Their experiences highlight how, within a welfare society where ideals of ­free and equal access to health care flourish, certain bodies, certain be­hav­iors, and certain perceptions succumb to the normalizing power of society, which seeks to remove them from dominant public discourse b­ ecause they threaten the unity of the state (Nielsen 2022). ­W hether it be by defaulting to gender or age ste­reo­types, by denying the ­women health care, or by discrediting their suspicions, the mechanisms of normalization silenced the ­women I met. In the absence of conclusive evidence in support of the ­women’s symptoms being caused by the HPV vaccine, health care professionals and the system they represent ­were not willing to leave the ­women’s suspicions and doubts untamed. Although I am not arguing that any one individual or group of individuals sat down and deliberately de­cided to silence the ­women, certain logics and rationalities concerning the inherent uncertainties of the ­women’s symptoms and the importance of HPV vaccination formed responses that made silence a correcting, normalizing function. The w ­ omen’s silences reflect this tension as well as their deep frustration and disappointment with being characterized as potential threats to civil be­hav­ior concerning cancer prevention and vaccination in a biomedical context and dangerous deviants who need to be contained to ensure broad population protection against HPV-­induced cancers and trustful state–­citizen relations.

Conclusions: Being Silent/Silenced To understand the role of dominant systems like biomedicine and public health, it is essential to consider what they do and what they make pos­si­ble to say (Davis 2000, 93). This entails a focus on not only what ­people talk about but also (and perhaps most importantly) what they do not or cannot talk about, what they strive “to keep away from attention and out of their social worlds” (Gammeltoft

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2016, 428). Confronted by continuous skepticism and the pos­si­ble stigma that follows, ­women with suspected HPV vaccine adverse reactions keep ­silent about the full extent of their experiences in both private and health care contexts. Their silences, however, should not be understood as mere refraining from disclosure. To some extent, the silences of the w ­ omen in this chapter (Lily, Rita, Susan, and Emma)—­who represent merely a few of the many w ­ omen I met during my fieldwork but whose experiences are not exceptions or rare, extreme cases—­reflect a certain level of expertise, which they practice to access care and acknowl­edgment. Yet their silences are also forced upon them, demonstrating the subtle mechanisms of the legitimization and normalization pro­cesses that operate through institutions like medicine and public health in Denmark to shape subjects in par­ tic­u­lar ways. In other words, their silence can be regarded as a form of adjustment in and to uncertain situations, at once both skilled and forced, when external forces have the power to place them in vulnerable positions, e­ ither complicating or easing their positions or roads to care. Being silent/silenced is a way for the ­women to become “good patients” or “good citizens” (cf. Offersen et al. 2017), and their silence expresses conformity to such ways of being, which enables them to access care and to gain legitimacy as being ill within the par­tic­u­lar context of the Danish welfare society. It enables them to circumvent societal and institutional attempts at categorizing them as antivaxxers or hypochondriacs and allows them to maintain their credibility in professional and personal relationships, thereby avoiding the potential stigma of ­going against the public discourse on vaccination and cancer prevention mea­sures. Living within a welfare society that promotes responsibility for one’s own care and compliance with certain care-­seeking practices, which encompasses refraining from misusing the system (Offersen et al. 2017), t­ hese ­women cannot ignore the experience of being abandoned by their society. This aspect must not be overlooked: t­hese ­women’s silence demonstrates desperation and determination to gain acknowl­edgment and legitimacy as ill.

notes 1. ​To ensure anonymity, my interlocutors have been given pseudonyms. 2. ​This chapter forms part of my PhD dissertation, “Doubt Injected: Cancer Vaccination, Con-

troversy and the Danish State” (2022), with some changes to structure and content.

3. ​Gardasil is administered as two or three doses, depending on the age of the recipient.

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Decisions? A Qualitative Analy­sis of Danish Cancer Patients’ Reflections on Care-­Seeking.” Scandinavian Journal of Primary Health Care 29 (3): 144–149. https://­doi​.­org​/­10​.­3109​/­02813432​ .­2011​.­585799. Banerjee, Dwaipayan. 2020. Enduring Cancer: Life, Death, and Diagnosis in Delhi. Durham, NC: Duke University Press. Basso, Keith H. 1970. “ ‘To Give Up on Words’: Silence in Western Apache Culture.” Southwestern Journal of Anthropology 26 (3): 213–230. http://­www​.j­ stor​.­org​/­stable​/­3629378. Berg, Anne Hagen. 2020. “ ‘Ha’ tillid og hold kæft!’ Modstand, konflikt og forhandling om MFR-­vaccinationer i 1990’ernes Danmark [”Have Trust and Shut Up!” Re­sis­tance, Conflict, and Negotiation about MMR Vaccinations in 1990s Denmark].” Bibliotek for Læger, March 13, 2020. https://­ugeskriftet​.­dk​/­bfl​/­ha​-­tillid​-­og​-­hold​-­kaeft. Connell, Erin, and Alan Hunt. 2010. “The HPV Vaccination Campaign: A Proj­ect of Moral Regulation in an Era of Biopolitics.” Canadian Journal of Sociology 35 (1): 63–82. https://­doi​.­org​ /­10​.­29173​/­cjs6689. Danish Health Authority. 2016. En indgang: Anbefalinger til organisering af tilbuddet “En indgang” [One Entrance: Recommendations for Organ­izing the “One Entrance” Initiative]. Sundhedsstyrelsen (Danish Health Authority). https://­www​.­sst​.­dk​/­​-­​/­media​/­Nyheder​/­2016​ /­EnIndgang​_E ­ ndelig​-­3,​-­d​-­,​-­februar​.­ashx. —­—­—. 2019. “Overvågning af bivirkninger [Monitoring Adverse Reactions].” Sundhedsstyrelsen (Danish Health Authority). Updated July 15, 2019. https://­www​.­sst​.­dk​/­da​/­viden​ /­vaccination​/­fakta​-­om​-­vaccination​/­overvaagning​-­af​-­bivirkninger. Danish Medicines Agency. 2021. “Interaktive bivirkningsoversigter [Interactive Adverse Reactions Overviews].” Lægemiddelstyrelsen (Danish Medicines Agency). https://­laegemiddelstyrelsen​ .­dk​/­da​/­bivirkninger​/­bivirkninger​-­ved​-­medicin​/­interaktive​-­bivirkningsoversigter​/­. Danish Regions. 2016. Status pr. 1. juni 2016 for aktiviteten på regionernes Én indgangafdelinger [Activity Status as of June  1, 2016, of Regional One Entrance Departments]. Danske Regioner. https://­www​.­regioner​.­dk​/­media​/­3266​/­hpv​-­status​-­tal​-­per​-­1​-­juni​-­2016​.­pdf. Davis, Christopher O. 2000. Death in Abeyance: Illness and Therapy among the Tabwa of Central Africa. Edinburgh: Edinburgh University Press. Dumit, Joseph. 2006. “Illnesses You Have to Fight to Get: Facts as Forces in Uncertain, Emergent Illnesses.” Social Science and Medicine 62 (3): 577–590. https://­doi​.­org​/­10​.­1016​/­j.​ ­socscimed​ .­2005​.­06​.­018. Elverdam, Beth. 2011. “ ‘It Is Only a Pinprick’—(Or Is It?)—­Childhood Vaccinations in General Practice as ‘­Matter out of Place.’ ” Anthropology and Medicine 18 (3): 339–350. https://­doi​.­org​ /­10​.1­ 080​/­13648470​.­2011​.­615912. Fine, Paul, Ken Eames, and David L. Heymann. 2011. “ ‘Herd Immunity’: A Rough Guide.” Clinical Infectious Diseases 52 (7): 911–916. https://­doi​.­org​/­10​.­1093​/­cid​/­cir007. Foucault, Michel. 1977. Discipline and Punish: The Birth of the Prison. New York: Vintage Books. —­—­—. (1978) 1990. “Part Five: Right of Death and Power over Life.” In The History of Sexuality, Volume 1: An Introduction, translated by Robert Hurley, 133–159. New York: Vintage Books. Gammeltoft, Tine M. 2016. “Silence as a Response to Everyday Vio­lence: Understanding Domination and Distress through the Lens of Fantasy. Ethos 44 (4): 427–447. https://­doi​.­org​/­10​ .­1111​/­etho​.1­ 2140. Goffman, Erving. (1963) 1990. “Stigma and Social Identity.” In Stigma: Notes on the Management of Spoiled Identity, 1–42. Harmonds­worth, United Kingdom: Penguin. Gullestad, Marianne. 1989. “Small Facts and Large Issues: The Anthropology of Con­temporary Scandinavian Society”. Annual Review of Anthropology 18: 71–93. https://­doi​.­org​/­10​.1­ 146​ /­annurev​.­an​.­18​.­100189​.­000443. Hammer, Anne, Lone Kjeld Petersen, Nanna Rolving, Martin Faber Boxill, Karen Hansen Kallesøe, et al. 2016. “Bivirkninger, som formodes at skyldes HPV-­vaccination i Danmark

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AFTERWORD Urgency, Modernity, and Pace in Cancer Care LENORE M ANDERSON

It’s a five-­hour drive from the capital city, Copenhagen, in the southwest of the country, to Skagen in the far north of Denmark, and good transport and communication networks link t­ hose who live on the main islands and peninsula smoothly to centers of care across the country. Government ideology, population values, and state institutions work to support a homogenous and strongly middle-­class society, and national commitment, resources, and systems of care provide safety nets to protect t­hose who, for vari­ous reasons, live relatively precariously. Even so, differences in cancer rates, illness, and death set ­people apart. Denmark has long experienced anomalies in the epidemiology of cancer. For several de­cades, the country had an especially high incidence and high mortality rates of vari­ous cancers. The rates ­were far higher than ­those experienced by neighboring Norway and Sweden, particularly for prostate and breast cancers; they w ­ ere much closer to t­ hose of countries with poor health ser­vices, weak economies, and fragile infrastructure. In 2015, an extraordinary 5 ­percent of Denmark’s population of 5.7 million w ­ ere undergoing treatments for cancer; by 2030, some 10 ­percent of the adult population are projected to be living in cancer remission. ­These metrics reflect a level of disease and death in a country in which, as a liberal welfare state, one might have expected far lower rates of prevalent cancers, especially where screening was and is available for cervical, colorectal, and breast cancers and for cancers with known preventive be­hav­iors and effective interventions. For other cancers of tissues, organs, and body systems that are harder to detect, one might still have expected better outcomes given the high levels of (health) literacy, good health insurance, sophisticated medical ser­vices, and relative ease of access to care and treatment. The Danish welfare state offers its citizens the structures for security in everyday living, and middle-­class values level out consumption patterns and lifestyle choices. Denmark’s skewed cancer rates are only partly associated with population ageing; other countries with similar demographic structures have quite dif­fer­ 166

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ent cancer rates. Health inequalities, including but not l­imited to cancer incidence and outcomes, appear to have increased incrementally in recent de­cades, suggesting the likely convergence of social risk f­ actors and deficiencies in the health system. The Danish media in the 1990s and early 2000s, as Marie Louise Tørring describes in this book, interpreted t­ hese elevated high cancer metrics as signs of trou­ble. Inequalities in access to diagnosis and treatment challenge Denmark as a modern welfare state in both re­spects: in relation to the “modern”—­efficient ser­vices, the timely use of sophisticated technology, and the capacity to head off serious illness and its potential lethality; and in relation to “welfare”—­the nation’s capacity to ensure that welfare policies and programs smooth over inequalities in life circumstances. The policy response was for patients and their clinicians to turn around ­these metrics via the prompt identification of signs and timely action on symptoms of cancer. This book, a polyvocal ethnography, centers on the challenges of timing: the timing of pre­sen­ta­tion, triage, and point of care, the initiation of treatment, and the pace of care and surveillance. I use the term polyvocal ethnography to emphasize the ways in which this work parts com­pany from edited collections, even if it is also this. Following the example of fellow Danish anthropologist Susan Reynolds Whyte and her collaborating authors in Second Chances: Surviving AIDS in Uganda (2014), in this book Rikke Sand Andersen and Marie Louise Tørring, and their colleagues bring together their studies on dif­fer­ent cancers with dif­fer­ent populations that emerged from a shared program of research undertaken over the past de­cade. In this program, the question of timing emerged as central; in this book, it takes center stage. Timing is relevant to the interpretation of bodies, the transformation of bodily anomalies into signs and symptoms, and decisions on pathways for care, but it is also a variable susceptible to life circumstances. The authors scrutinize the real­ity of cancer diagnosis and care in Denmark against the ideology of middle-­classness; in so d­ oing, they illustrate the difficulties that p­ eople face when life is overwhelming, decision making is unclear, and state care is inadequate or poorly paced. Timing is difficult to translate into operable health system infrastructures. The ethnographies that constitute this volume help us understand the cultivation of biopolitics within a welfare system and illustrate how dif­fer­ent forms of moral orientations and anticipations—­actions to control the ­future—­play out in a po­liti­cal context. Cancer waiting times and cancer outcomes are an index of the “state of the nation.”

Understanding Anticipation Public health programs, addressing and reducing behavioral risk ­factors, and individual adherence to injunctions to change are part of a broad map of action designed to shift cancer’s prevalence and worst outcomes. But once ­there is a possibility of cancer, the technologies of diagnosis and surveillance—­pathology

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ser­vices, X-­rays, ultrasounds, and the like—­establish ­whether or not a person has signs that need to be explored, the staging and extensiveness of pos­si­ble pathology, and the success (or not) of the earliest interventions. Worldwide, ­these two components—­public health programs and diagnostic technologies—­help explain disparities in the incidence and outcomes of cancer, although how t­ hese unpack and are experienced in dif­fer­ent settings vary, as illustrated powerfully in dif­fer­ent country settings (e.g., Banerjee 2020; Gregg 2003; Livingston 2012; Lora-­Wainwright 2013). Lack of access to screening ser­vices, toxic living and work conditions, l­imited information on cause and prevention, lethal industries and venal surveillance, too few specialists working with grossly inadequate resources, global inequalities in the availability and affordability of materials, equipment, and phar­ma­ceu­ti­cals, and the toxic echoes of colonialism and continued structural vio­lence, all shape the risk of the development of a cancer, what might be done, and how successful an intervention might be. Social, structural, and institutional ­factors impact everyday life and health seeking. ­These ­factors interact to influence how a person reacts to and acts on a sense of embodied discomfort or vis­i­ble or palpable anomaly. The anticipation of cancer influences when patients pre­sent to their doctors. Doctors, when they anticipate cancer, accelerate steps to diagnosis and refer their patients on. The imperative of timeliness and the pacing of care aim to stall the development of disease, divert its course, and so strip cancer of its lethality. This attention to time, pace, and anticipation is the focal point of this book. In understanding anticipation and thus how ­people make decisions, the authors begin with the work of Vincanne Adams, Michelle Murphy, and Adele E. Clarke (2009) on the role of con­temporary medical technology in enabling prognostication and, from this, pre-­emptive intervention. Anticipation, t­ hese authors argue, “is not only an epistemic orientation t­ oward the f­ uture” but also a “moral imperative, a w ­ ill to anticipate . . . ​an act in which life, death, identity and prosperity are at stake personally and collectively” (2009, 254). The logic to anticipate and treat to prevent the development of disease, or to intercept to head off escalation, deterioration, and complications, occurs at the levels of organism, person, and community. Any sign, symptom, or anomaly of the body over time might be pernicious; hence the importance of diagnosis. As Joseph Dumit (2012) argues, often disease is already a­ fter the fact, which has led to a growing clinical emphasis on predictive “virtual pathologies,” signs or probabilities based on con­temporary biomedical understandings of the pathogenesis of any condition (Adams, Murphy, and Clarke 2009; Greene 2007). Dumit’s examples of anticipatory action to avert chronic conditions include lifelong regimens of medi­cation, with ongoing care ensured through the continued relationship of the patient and their treating physician (Manderson 2020a). As part of this, patients are expected—or “responsibilized”—to pre­sent themselves for routine monitoring to test for the stability of biomarkers, to identify new signs and potential dysfunctions, lacks,

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and excesses, and to evaluate the continuing effectiveness of the type and amount of medi­cation prescribed. Bone scans, X-­rays, ultrasounds, and regular blood tests for biochemical markers as well as ge­ne­tic tests (Gibbon 2015, 2017) enable doctors to identify possibilities, see what is g­ oing on or what might be, and act accordingly. Multiple technologies come into play for cancer’s prevention and diagnosis through their capacity to make the invisible vis­i­ble. Less than one in three p­ eople with lung cancer, for instance, have symptoms that allow for early interventions. Computed tomography (CT) scanning helps increase the opportunity for early diagnosis. Smaller and smaller changes are detectable, faster and cheaper, allowing decreasing radiation doses to detect changes before biopsy is pos­si­ble. But as Michal Frumer in this volume explains, such early diagnostic paths are echoed in practices, relations, and medical concerns. The technology is aimed to control uncertainty, even though anomalies and warning signs are not necessarily apprehended at a time that might, with hindsight, be “early enough.” The aim of early diagnosis is for patients to be reassured and to preclude the eventuality of cancer—to identify precancer in suspicious histology, for instance, or, at worst, to identify established cancer quickly enough for it to be excised and/or treated with chemotherapy, radiotherapy, or both. Early diagnosis reduces the risk of serious illness and pos­si­ ble death; it reduces fear and allows for hope. In Cancer Entangled, ­because the speed of the proliferation of cancer cells is central, anticipation and timeliness take on an urgency. Each author builds on ­earlier understandings of risk, anticipation, and diagnosis, offering fine-­grained ethnographies of diagnosis in order to tease out the subjective nature of time, and action and reaction in time. Time’s significance is nuanced in response to imperceptible changes in bodies, imaged in changes in cell structure, and i­magined. To address Denmark’s disturbing cancer metrics, ­people are urged to always anticipate cancer’s possibility and then to act with speed and responsibility in ways consistent for citizens of a modern nation-­state. When Adams and colleagues w ­ ere writing, t­ here was strong interest in the use of ge­ne­tic information to identify risks of disease and from this the promise of personalized medicine. In Denmark as elsewhere, including in poor country settings, ge­ne­tic screening became one of a number of technologies of anticipation, potential, and identity (Finkler 2000; Gibbon 2013; Gibbon and Novas 2008). Yet the most common use of ge­ne­tic information for cancer was not especially sophisticated—­the response was surgical. By the turn of the millennium, prophylactic mastectomies and oophorectomies w ­ ere already being embraced by w ­ omen who ­were concerned about their elevated risk of breast cancer due to mutation of the BRCA1 gene. Th ­ ese procedures as a preventive option, together with increased screening, escalated with the rise of celebrity surgeries (Carbine et al. 2018; Finkler 2000; Gibbon 2007). But this arguably had ­little impact on disease prevalence and mortality in general. Only around 5 to 10 ­percent of breast cancers are linked to ge­ne­tic risks; age and gender, ­family history not related to ge­ne­tic markers, age

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at menarche, parity, breastfeeding, breast density, benign breast conditions, exposure to everyday chemicals (including in cosmetics and sunscreen, vari­ous environmental chemicals, and hormone replacement therapy), body weight, diet, smoking, and alcohol consumption all contribute to breast cancer risk. Most signs of cancers of all kinds are detected at home or in general practitioner (GP) clinics, with consultation triggered by subtle perceived indications, and the pursuit of definitive diagnosis informed by clinical judgment, without ge­ne­tic markers signaling attentive surveillance. As Benedikte Møller Kristensen illustrates in this book, t­ here are multiple players in the diagnostic race against time, and cancer’s possibility informs the actions of both clinicians and patients. Mindful of the state’s expectations that they reduce poor cancer outcomes, clinicians must navigate their way through patient reports, attend to signs of pos­si­ble disease, and find ways to accelerate investigation and action b­ ecause of cancer’s sensitivity to time. Regardless of their own perceptions of patients’ motivations for presenting for care, clinicians need to deftly combine their own gut feelings and their knowledge and interpretation of X-­rays, ultrasounds, CT scans, biopsy, and histology.

How Delay ­M atters Denmark was not alone in identifying delay as a reason for a higher-­than-­expected incidence of dif­fer­ent cancers. Much of the research on diagnostic delay has been conducted in low-­resource settings and poor communities, where community education levels and health literacy are used to explain lack of familiarity with the signs of cancer and fear of cancer disease and treatment (Ly et al. 2002; Mathews, Burke, and Kampriani 2015; McMullin 2016; Mulemi 2008; Smith, Pope, and Botha 2005). But in high-­income settings, too, ­there is growing awareness of relative disparities of cancer incidence and outcome, partly tied to delay. In Germany, for example, some 70 ­percent of all ovarian cancers are diagnosed at an advanced stage, with a poor prognosis as a result. This has been attributed in part to ­women’s lack of awareness of the signs of potential ovarian cancer; however, as Susanne Brandner and colleagues (2017) have suggested, ­women’s own explanations reflect their concern with being regarded as a hypochondriac or wasting time. In addition, their need to manage other responsibilities is often greater, including paid work and domestic responsibilities, personal care, and social responsibilities (Brandner et al. 2017). In Denmark, concern increased from the early 2000s to reduce what health advocates and policy-­makers characterized as a t­riple delay. Th ­ ese delays, often stretching over months, are considered critical ­because cancer’s pro­gress is particularly sensitive to time. In general, at least in the popu­lar imagination, the ­earlier a cancer (of any kind) is identified, and the e­ arlier it is treated, the more likely a cure, remission, and survival. The first delay, it was argued, involved patients, with their delay characterized as the time between their awareness of signs and their first consultation with their GP for an initial assessment. The second delay, by the

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GPs, occurred from this first pre­sen­ta­tion of the patient to the patient’s referral for specialist evaluation and care. The third delay occurred within the hospital system in moving from specialist consultation to timely medical intervention. In this latter context, GPs and oncologists explained ­these poor health outcomes as owing to waiting list “scandals” and “sloppiness” in the health system. Treatment pathways and priorities certainly contributed, but as the authors in this volume have illustrated, the public health lit­er­a­ture on delay largely overlooks the social and ethical dimensions that arise in relation to accelerated cancer diagnostics. Furthermore, multiple f­actors produce the delays that do exist. For patients, t­hese include interference from other life priorities, reluctance to entertain serious disease, fear of doctors and medical practice, challenges with transport, and lack of capacity to communicate with doctors or to comprehend advice. Timely action in response to signs of disease draws attention to the fact that adherence to advice to reduce cancer risk does not promise a cancer-­free life (Manderson 2020b). Denmark has a very high level of cancer awareness and a strong commitment to prevention and care: around 6 ­percent of the population belong to the Danish Cancer Society. Although in neoliberal nations everywhere cancer prevention has been tied to personal be­hav­ior—in par­tic­u­lar to diet, smoking, physical activity, drinking, and participating in screenings—in Denmark neoliberalism extends to the responsibility of ­people to monitor their own bodies and to take action in a timely fashion if indicated (and not to do so if it is not). Sara Marie Hebsgaard Offersen, in this volume, explores the challenges of bringing about awareness of the possibility of cancer; as she describes it, the motto on the box of candy—­“The sooner the better in primary care”—­captures the need for alertness and timeliness in the ordinary, undramatic rhythm of everyday life. Likewise, the drive to vaccinate against ­human papillomavirus (HPV) to prevent cervical cancer and the silencing of adverse vaccination events, as described h­ ere by Stine Hauberg Nielsen, is part of this public health imperative; vaccination assumes that cancer is a population-­wide prob­lem and that all p­ eople are at risk. Vaccination and vigilance are parallel strategies of control. As the authors in this volume illustrate, not all p­ eople are willing or able to change their lifeways to reduce their vulnerability—to cease to smoke, for example, or to avoid fatty foods, drink with moderation, or exercise. Further, ­peoples’ be­hav­ior or environment can place them at “low risk but not no risk,” and the notion of low-­risk-­but-­not-­no-­risk in cancer discourse sweeps up just about every­ body. No one can be reassured that they w ­ ill never experience any kind of cancer, not least ­because of cancer’s multiplicities and unpredictability. Screening programs are available throughout Denmark for cervical, colorectal, and breast cancer, but the procedures required to investigate pos­si­ble disease begin only in response to perceived changes to the body—­the discoloration of skin, a per­sis­tent cough, bloody stools, back pain, and the like. At the same time, with medical imaging, precancer, cancer, and even “potential” precancers are detectable as microscopic changes in tissue, cell structure, and

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growth. For such micro-­growths, interventions have become less invasive. Julie Livingston’s characterization (2012) of cancer treatment as poisoning, cutting, and burning remains true everywhere, but in advanced economies, early detection and microsurgery enable the rapid excision of suspicious cells and reduce time in hospital, larger tumors, and metastasis. Yet partly the fear of ­these procedures and their side effects, as well as the fear of diagnosis and assumed poor prognosis, discourages ­people from presenting for care. The fear, too, is that any sign means it is already “too late” to intervene. Timing is every­thing. Danish welfare society is structured to ensure cost effectiveness and equality even in caring for p­ eople who are especially vulnerable. The health system, as Sara Marie Hebsgaard Offersen characterizes it, is highly efficient, technologically superior, well-­funded, and po­liti­cally prioritized; 85 to 90 ­percent of all cancers are diagnosed on the basis of symptomatic pre­sen­ta­tion. All ­people in Denmark are registered with GPs, and the GP is the portal to acute and specialized care. GPs see only a few cases of cancer in a year—­perhaps six to eight—­but they are alert to the need to be open to cancer’s possibility; to misdiagnose or to set aside suspicion of cancer risks jeopardizing a patient’s life. GPs therefore take seriously patients’ expressions of concern. GPs are trained (and retrained through refresher courses) to be alert to the slightest changes in texture or size or color of a blemish on the skin or a wound that fails to heal. Per­sis­tent coughs and recurrent pain may have many ­causes, but cancer haunts the GP. “Gut” feelings might reinforce or challenge clinical assessment and test results. In addition, two power­ful discourses of everyday moral be­hav­ior compete in relation to cancer’s anticipation. On the one hand, ­because Denmark’s aty­pi­cal cancer metrics are explained as the result of delays by patients and providers, the emphasis on reducing poor health outcomes focuses on urgent action and acute care. ­People ­were (and are) enjoined to take seriously small changes in body morphology, sensation, temperature, and shape that fall outside an expected trajectory of change given life circumstances, age, and gender. Imprecise but perceptible changes are urgent signals for ­people to see their general practitioner; the practitioner, in turn, is charged with turning the uncertainty of ­these signs into the diagnosis or exclusion of cancer. As Rikke Sand Andersen (chapter 3) notes, time is a cultural proxy for biological tumor growth, with rapid growth inevitably associated with poor prognosis. The idea of unnecessary delay must be seen against what is pos­si­ble, in the growing understanding of competition between cancer’s speed and the speed (and increasing accuracy) of dif­fer­ent technologies to provide differential diagnosis. Delays occur if symptomatic patients hesitate to see a doctor, if GPs are reticent about referring patients to hospitals for a follow up, or if hospitals lack the capacity to act promptly and perform the necessary tests and treatments in a timely fashion. In each of ­these cases ­there is an assumption of that doctors can recognize symptoms and make appropriate supplementary diagnostic tests.

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On the other hand, ­people are counseled not to waste time and resources by presenting for medical care unnecessarily. The imperative to use health ser­vices judiciously gained importance as one cause for Denmark’s relatively high cancer morbidity became clear—­hospitals in the country simply lacked the resources, space, and capacity to treat ­people in a timely fashion. Even in a state with such high levels of investment in quality care and resources, ­there ­were still waiting lists and extended waiting times. Such waiting could be fatal for p­ eople for whom oncology intervention was urgent. Thus, potential patients had tread a fine line, risking moral default e­ ither by seeking medical care when they do not need it or by failing to seek care in a timely manner when they do.

Escalation and Visibility In this book, the authors focus on specific dilemmas around exigency. Rikke Sand Andersen refers to the challenges related to caution and expediency, thus encapsulating the moral dilemma of timely pre­sen­ta­tion without overburdening resources. This is not unique to Denmark; Susanne Brandner and colleagues (2017) have made a similar point in relation to German w ­ omen’s reluctance to pre­ sent for medical attention with early signs indicative of ovarian cancer. In Denmark, anticipation and timeliness converge in the urgency imparted to the public to identify and act on the earliest pos­si­ble signs of disease. Cancerous cells are represented as multiplying at speed, and thus “the e­ arlier the better” suggests fewer areas to be targeted for interventions, rather than slower cell growth. But the dictate to seek care in the face of nonspecific signs of disease means that ­people are increasingly unable to trust their own bodily signs and sensations. Changes in sense, smell, feel, and shape are simply signposts to action, and doctors need to back their clinical judgment with diagnostic technologies. However, the possibility that par­tic­u­lar signs of disease are not cancerous, as noted previously, discourage ­people from presenting for medical advice (Brandner et al. 2017; Markovic, Manderson, and Quinn 2004). In Denmark, once a patient comes to the clinic, the GP’s sense of the urgency for a definitive diagnosis is presented as just as impor­tant for the ­mental health of their patients, and it informs the GP’s perceived need to act with speed to arrest cancerous growth. Across the chapters, the authors explore how both patients and medical providers understand uncertainty at the point of diagnosis (on which, see Nissen and Risør 2018; Smith-­ Morris 2015) as they negotiate complexities in care when disease progression is volatile and time is of the essence. Cancerous cells multiply indiscernibly, so tangible, vis­i­ble, and palpable changes—in texture, smell, shape, and appearance—­are signals for urgent action. Maurice Merleau-­Ponty’s ([1945] 2013) work guides the authors through the quandaries of interpreting the body. Merleau-­Ponty was concerned with the relationship between embodiment and perception, and his contemporaries and ­others have

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pursued this in relation to dif­fer­ent aspects of health and well-­being (Canguilem [1966] 1991; Leder 1990; Manderson 2011). In ­these analyses, health is elusive, an “absent presence”; anomalous states of perception, function, and sensation are clues to pos­si­ble action. But for cancer, as already noted, changes at a cellular level are imperceptible, and ­there is always the possibility of cancer residing within the body. Cancer is always likely, ever-­present in its absence. In this volume, ­there is one exception to attention to clinical diagnosis and accelerated care—­the final chapter by Stine Hauberg Nielsen on the vaccine for HPV, the primary cause of cervical cancer. Again, however, her concern is around a moral dilemma. This time it is the obverse to timely reports for medical care: Nielsen is concerned with the pressure on w ­ omen to not report side effects of the vaccine lest this disrupt the national promotion of the vaccine to reduce the incidence of cervical cancer. Nielsen’s study population is young w ­ omen who have had negative reactions to and have been disabled by the vaccine. Their complications and adverse effects include pain, headaches, dizziness and fainting, fatigue, and cognitive dysfunction, both short and long term. Any pharmacological intervention comes with some risk, but the ­women who report ­these extensive adverse effects face suspicion, derision, and disbelief. They are routinely silenced, rendering their experiences invisible. P ­ eople’s commitment to the welfare state and to modern medical interventions and their embrace of ­these goals and programs underpin both how ­people act and what they say or hold close. The risk of speaking against a procedure promoted by the state for the public good is a moral dilemma that informs everyday actions. Elsewhere, I have characterized living with ongoing treatment and the likely trajectory of a chronic condition as living “­under diagnosis”: the diagnostic category marks the patient and their families in par­tic­ul­ar ways (Manderson 2020a). Camilla Hoffman Merrild, in this volume, illustrates how diagnosis loops back to individual be­hav­ior and choice, exploiting a culture of blame for cancer’s presence. Yet notwithstanding the presence or absence of risks, almost every­one falls into the category of being “potentially precancer.” Diagnostic tests, treatment pathways, and methods and materials of treatment and care are all part of an assemblage (Deleuze and Guattari 1993), with each dif­fer­ent kind of cancer requiring a dif­fer­ent mix of specialists, materials, funding models, and management. Rikke Aarhus in this volume takes up the challenges of accelerated diagnosis, and writes of the time work and emotional and social work required by institutions and individuals to access and navigate diagnostic investigations. Drawing on ethnographic work within the clinic, she illustrates how clinicians draw on technologies to narrow down diagnoses, while multiple meetings among clinicians and with patients, referrals and consultations, CT scans, sonographies and biopsies, test the patience of the “most stoic” of patients. ­Until proven other­wise, clinicians pursue the pos­si­ble diagnosis of cancer in order to eliminate it (or not), while seeking to minimize the anxiety that individual patients and their families feel at its possibility.

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As Rikke Aarhus explains, clinical pathways ensure both patients and health professionals of appropriate action in the context of uncertainty. Health providers improve patient satisfaction and accelerate diagnosis, and reduced variation between patients and GPs ensures optimal outcomes. The aim is to assure patients that they are ­free of cancer or that their prognosis is optimistic. In regimes of anticipation, anxiety and drama surround a pos­si­ble cancer diagnosis and best outcome, and enfold with the everyday. ­Here, the rationale for urgent action is partly to do with cancer’s speed and partly with the patients’ m ­ ental health and the psychological costs of waiting. Hence, health providers—­GPs and specialists—­constantly adjust procedures and schedules to adapt to life circumstances while intercepting cancer’s pos­si­ble path. Reinforced by awareness campaigns and population screening programs, the goal of fast-­tracking diagnostic pathways adds a new dimension to the relationship of individuals to the collective and what can be protected by the welfare state. The question is not, therefore, ­whether ­people have access to care, but on what basis they should seek access and at what point in time. As I have discussed, this is a moral dilemma: between rapid action for early diagnosis, intervention, and best pos­si­ble outcomes, and presenting unnecessarily and therefore wasting time. Uncertainty and ambiguity shape the actions by individual patients, doctors, and specialists, and the ­imagined possibility of “taming uncertainty” and exercising control over the subjunctive. The aim is for diagnostic closure. The benefits of biotechnology as a diagnostic tool for establishing certainty in con­temporary medical regimes creates an illusion of control that collapses when certain kinds of cancer are elusive or incurable. The emphasis on acceleration, vigilance, and proactive care seeking occurs in the face of social in­equality. In this volume, the authors focus on Danish-­born Danish speakers, so they slip over other marginalized p­ eople, both within the highly populated peninsula and islands of the country and in more distance settings, Greenland especially. But despite its embrace of middle-­class living, social differences shape cancer outcomes in Denmark as elsewhere (McMullin 2016). Large numbers of ­people live with formal social support, including everyday living assistance, which challenges the illusions and ideals of egalitarianism and middle-­class universality. Camilla Hoffman Merrild (this volume) interrogates how such vigilance and proactivity to seek care are experienced by ­people who live outside the ­labor force and outside middle-­class Denmark, who rely on a system of lifelong reciprocity with the state. The state supports the assemblages and networks of systems to respond to health and other crises, although with the expectation that ­people w ­ ill maintain their health as best they can through attention to diet, not smoking, exercising, and limiting alcohol. For ­these p­ eople, injunctions of vigilance and action are complicated by their extensive interactions with the welfare system and the uncertainties of everyday life. The lives of ­people living in poverty or marginalized by language or recency of arrival may be compromised, chaotic, or complicated, and

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they often face difficulties in honoring state directives to manage their bodies. The conformity implicit in the welfare state also functions to obscure difference; it contributes to ­people falling out of the system and its protective arms.

Reflections Cancer metrics and their circulation consistently remind members of the public, policy-­makers, and health professionals of cancer’s possibility. Despite po­liti­cal and biomedical attempts to increase survival rates from cancer as a result of early detection, the imperative to do this means that the high possibility of cancer is a “ghostly presence” (Derrida 1994)—it is always a potentiality, as Benedikte Møller Kristensen illustrates. The search to explain discomfort assumes the possibility of cancer; par­tic­u­lar procedures take place even when prior results are not yet available. Tests are scheduled so that the results overlap in the clinic to enable timely action and adherence to what might be expected as best practice; the cost of tests that might prove unnecessary are balanced against the cost of wait-­time between one test and the next. As Michal Frumer has described the use of CT scans, the power of this technology is to identify microscopic changes—­not yet cancer but indicative of its ­future development. Health professionals work to provide timely diagnosis to reduce uncertainty ­because of how the trajectory of the disease is understood; however, as already noted, haste is also rationalized in relation to the ­mental health of patients and their families. Time and technology, all the authors illustrate, converge to create narratives of hope for patients shepherded into this system. In each of ­these cases, the authors explore cancer’s instability and sensitivity to time, time’s availability and mutability, and the interactions of patients, providers, and technologies of surveillance to drive down cancer incidence and death. This is not a book about one kind of cancer, nor even a cluster of related cancers. But for any cancer, diagnosis yields power in its ability to map out ­futures, even when symptoms conflict or fluctuate, ­w hether or not the diagnostic label is accurate at all or for any par­tic­u­lar person. Differential diagnosis determines which paths are then taken for patients and their families by treating oncologists and other specialists. The label rather than clinical pre­sen­ta­tion determines a cancer’s management, and this management has a cultural life produced by multiple actors: consumer support groups, oncological distinctions and diagnostic guidelines, the phar­ma­ceu­ti­cal industry, and the development of drugs to control par­ tic­u­lar symptoms and to kill cancerous cell growths and more drugs to manage the side effects of ­these treatments. Government departments, specialist surgeons, doctors, and ­others rely on medical interventions and technologies to manage Denmark’s cancer epidemic. But as the authors illustrate in Cancer Entangled, ­these are unevenly accessible and available, even in a nation so committed to ensuring equity and to its status as a  welfare state. Life course events, personal capacity, ­family relations and their

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robustness, social identity, and everyday life all have an impact on health and well-­ being. The proximate ­causes of cancers—­so-­called lifestyle ­factors—­are all mutable, depending both on state commitment to intervene and on personal capacity to change. This is barely feasible for some of the ­people with cancer whose lives give rich texture to this book. Denmark is the sharp contrasting case to Gaborone (Livingston 2012), Delhi (Banerjee 2020), or a village China (Lora-­Wainwright 2013), where life and death are sharp reminders of personal, local, and global inequalities. Everywhere, medical expertise along with diagnostics, treatment paths, procedures, and phar­ma­ceu­ ti­cals extend into increasingly globalized clinical environments (Banerjee 2020; Burke and Mathews 2017; Livingston 2012). At the same time, excepting where treatments do not attract subvention by the state and where medi­cation is prohibitively expensive (for most ­people), we assume that access to diagnosis and care is spread relatively evenly in the Global North. But, like a handful of o­ thers (Greco 2019; Mathews, Burke, and Kampriani 2015; McMullin 2016), the authors of this volume illustrate variance in diagnosis, treatment, and outcome, even in a country dedicated to ironing out the unevenness of life circumstances. Understanding cancer’s differences not as an artifact of under­lying cause or distinctive pathophysiology but as a reflection of in­equality and infrastructures built with the intent to equalize time leads us to reflect on the tensions that exist in any social, economic, and personal setting. Even when good systems are in place, cancer metrics point to state failures, or are so interpreted. Ethnographic research draws attention to h­ ouse­hold surveillance, medical skills, the procedures and technologies for cancer diagnostics, and questions of time, timeliness, and the pacing of care. This volume highlights the importance of understanding the pro­ cesses of early diagnosis and intervention for ­people whose lives are deeply disrupted as cancer shifts from anticipation to suspicion to fact. In this re­spect, questions of anticipation and urgency, and the pace and accuracy of diagnosis and equality of care, are critical for both patients and their providers.

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ACKNOWL­E DGMENTS

This volume represents the work of eight engaged anthropologists who have all done ethnographic work on con­temporary shifts in cancer control in Denmark at the beginning of the millennium. The volume was made pos­si­ble by a research program on “early cancer diagnosis” initially supported by a large grant from the Danish Cancer Society and the Novo Nordic Foundation and headed by epidemiologist Peter Vedsted. Rikke Sand Andersen was co-­applicant on the initial application, and work funded by the initial grant led to subsequent smaller grants from the Danish Cancer Society, Helsefonden, and Aarhus University Research Foundation, which made it pos­si­ble to expand the group of anthropologists working on the research program. Volumes such as this one are not only the product of the work of the collective of authors whose names are made vis­i­ble in print. They are also the product of their authors’ social collectives of conversation and collaboration. First of all, we are indebted to Peter Vedsted and Frede Olesen for their generous invitation to join the ambitious research program on early cancer diagnoses at the Research Unit for General Practice, and for their willingness to engage with us in interdisciplinary conversations on cancer, temporality, and acceleration as we started following the more obvious as well as the implicitly laid out routes that our anthropological training inspired us to take. This volume would not have existed had it not been for that first open invitation to join the vibrant and interdisciplinary general practice research environment in Aarhus. Also, we greatly appreciate the PhD and postdoctoral fellows who have all dedicated their work, attention, and time to further our understandings of cancer control in Denmark: Sara Marie Hebsgaard Offersen, Rikke Aarhus, Camilla Hoffmann Merrild, Michal Frumer, Stine Hauberg Nielsen, and Benedikte Møller Kristensen. They all brought unique contributions and g­ reat energy to the many tasks involved in such a ­great endeavor. They all participated in writing up grant applications, designing the individual studies, and analyzing and writing up the material. They have all collectively and singly helped shape the volume, both through writing the chapters and through participating in a long conversation on cancer, diagnostics, and welfare that goes back eight to ten years. Also warm thanks to all our colleagues for their engagement, support, and not least willingness to participate in cross-­disciplinary dialogue. Jens Søndergaard, Flemming Bro, Henry Jensen, and Peter Vedsted, thank you for sharing your thoughts on relations between clinical research and practice, and for inviting us into the worlds of epidemiology, ­family medicine, clinical care, and diagnostics and for providing your views on cancer control. As indicated h­ ere, many p­ eople have helped shape our research. Lotte Meinert and Jens Seeberg, thank you for facilitating a creative medical anthropological 181

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Acknowl­edgments

teaching and research milieu in Center for Cultural Epidemics, Department of Anthropology at Aarhus University in which we thrived. We send our extended thanks to Mette Bech Risør and her colleagues at the SenCancer research proj­ect at Arctic University in Tromsø from whom we learned for several years. And we thank Tine Tjørnhøj-­Thomsen, Britta Tarp and Ulrich Fredberg for co-­supervising and hosting the young scholars of the proj­ect. We are also grateful to Cameron Hay for the encouragement to engage in cross-­disciplinary research, who has shown the way for other anthropologists to do likewise. Thank you to Arthur Kleinman for hosting Sara Marie Hebsgaard Offersen and for commenting on grant applications and to Bernhard Hadolt for hosting Stine Hauberg Nielsen while she was writing her dissertation. Thank you to Sue Ziebland, Senada Hajdarevic, Birgit Rasmussen, John MacArtney, and the rest of the research group from the Comparative Cancer Pathways research proj­ect for hosting inspirational workshops and for inviting us to participate in research proj­ects in the United Kingdom. Thank you to Helle Ploug Hansen for bringing together Scandinavian-­based cancer researchers in the context of the network Miljø for Humanistisk Kræftforskning; this network initially had a major impact on our thinking. Fi­nally, thank you to Lenore Manderson for her insightful comments on early ideas for this book and for sharing her thoughts and massive insights on cancer research and medical anthropology in the afterword. Conducting anthropological and ethnographic research in places fraught with poverty or amid clinical and hospital settings marked by efficiency and haste is difficult; ­these spaces are challenging to enter and require effort from p­ eople not directly implicated as colleagues. Without the clinical competence and openness by the health care professionals who served as co-­supervisors or gatekeepers, ­these studies would not have been pos­si­ble. On behalf of the entire group of researchers, we in par­ tic­u­lar wish to extend our thanks to all the p­ eople who invited us into their homes, families, or workplaces, who allowed us to shadow them and participate in the intimacies of their everyday lives and at times witness their endurance of potential cancer. We also wish to thank the care workers, receptionists, coordinators, nurses, and clinicians who allowed us to participate in their work hours, who took time for interviews, and who helped us or­ga­nize and orchestrate the ethnographic studies. Fi­nally, we wish to extend our thanks to our editor, Kimberly Guinta from Rutgers University Press. With ­great patience Kimberly has answered our questions, accepted our delays, and guided us through the pro­cess of writing and rewriting. Also, thanks to Ignacia Arteaga Pérez who reviewed the manuscript for Rutgers University Press, reading and commenting on our work with g­ reat care and attention. Last but not least, we would like to thank our f­ amily members and friends for their patience and support. We are particularly indebted to Jakob and Jakob for companionship and care, and to our c­ hildren, Saxe and Nora, and Liva, Aja, Sif, and Solvej for their love and joyful com­pany.

NOTES ON CONTRIBUTORS

rikke a arhus is an anthropologist and se­nior researcher at the University

Research Clinic for Innovative Patients Pathways in the Diagnostic Center of Silkeborg Regional Hospital. In her work she explores the implications of acceleration, standardization, and optimization of diagnostic work, in par­tic­ul­ar how the organ­ization of health ser­vices and the notions of urgency become entangled with perceptions of care. She draws on insights from her PhD studies on time and cancer diagnostic pathways for her chapter in this book. rikke sand andersen is an anthropologist and professor with special responsi-

bilities in the Department of Public Health, F ­ amily Medicine of the University of Southern Denmark and in the Department of Anthropology at Aarhus University. She is the editor-­in-­chief of the Scandinavia-­based medical anthropology journal Tidsskrift for Forskning i Sygdom og Samfund, board member of Medical Anthropology Europe–­European Association of Social Anthropologists (MAE-­EASA). She has written extensively on cancer diagnostics, the production of cancer symptoms, and healthcare seeking. Together with Mette Bech Risør and Mark Nichter, she edited a special issue on sensations and healthcare seeking for Anthropology in Action. She is currently editing a special issue on medical semiotics for Medical Anthropology, and she is initiating research on “solo living,” exploring how notions of solitude and relatedness may be understood through the diseased body. michal frumer is an anthropologist and postdoctoral researcher at Aarhus University Hospital and external lecturer in the Department of Public Health at Aarhus University. Her interests revolve around the management of uncertainty and ethical predicaments in diagnostic work, as well as questions of prioritization and trust in biomedical expertise. She draws on insights from her PhD studies on pulmonary nodules and the production of “precancerous populations” for her chapter in this book. benedikte møller kristensen is an anthropologist and postdoctoral researcher

at Region Zealand and the Research Units for General Practice at Copenhagen University. Previously she has done work on shamanic ontology of the Duha reindeer nomads of Mongolia. She draws on insights from her ongoing postdoctoral research on clinical reasoning and hauntology for her chapter in this book. lenore manderson is Distinguished Professor of Public Health and Medical

Anthropology in the School of Public Health of the University of the Witwatersrand in Johannesburg, South Africa, with professorial affiliations with Brown University (United States) and Monash University (Australia). She is known 183

184

Notes on Contributors

internationally for her work on in­equality, marginality, and infectious and chronic diseases in Australia, Southeast and East Asia, and Africa. She has conducted research and published on cancer with Indigenous, immigrant, and Anglo-­Australian ­women, including in Surface Tensions (2011). Her most recent book is Viral Loads: Anthropologies of Urgency in the Time of COVID-19 (edited with Nancy J. Burke and Ayo Wahlberg, 2021). She has written extensively on cancer, exploring how pro­ cesses of globalization are rescaling how p­ eople experience living with cancer and how specific, local medical interventions shape hopes and practices. c a mill a hoffmann merrild is an anthropologist and se­nior researcher at the

Center for General Practice at Aalborg University. She has worked extensively with social inequalities in health in the context of the welfare state. She is currently conducting research on child maltreatment, exploring how suspicions of child neglect and abuse are made vis­i­ble in the clinic. She draws on insights from her PhD studies as well as her postdoctoral research on social in­equality in cancer for her chapter in this book. stine hauberg nielsen is an anthropologist and postdoctoral researcher in the

Department of Anthropology at Aarhus University. Her research concerns emergent illnesses and technologies, care work, and citizenship and the (welfare) state. For her chapter in this book, she draws on insights from her PhD studies on the Danish HPV vaccine program with par­tic­ul­ar attention to how it reconfigured into a policy and care field in the wake of suspected adverse reactions reports and drastic drops in vaccine uptake. Her PhD proj­ect forms part of an interdisciplinary research proj­ect, Public Health at a Crossroads (PUSH). sar a marie hebsga ard offersen is an anthropologist and se­nior researcher

at Steno Diabetes Center Aarhus, Aarhus University Hospital, and external lecturer in the Department of Public Health at Aarhus University. Her research interests center on everyday life perspectives on illness, and the moral, sensorial, and uncertain space between being a person and being a patient. She is currently part of a research proj­ect on the welfare state and ­family relations in Denmark (ALONE). She draws on insights from her PhD studies as well as her postdoctoral research on middle-­class-­ness and cancer potentialities for her chapter in this book. Offersen did her PhD studies at the Research Unit for General Practice, Aarhus University. marie louise tørring is trained as an anthropologist and epidemiologist, and

she holds a position as associate professor and research program director in the Department of Anthropology of Aarhus University. For the past de­cade she has conducted epidemiological and anthropological research on con­temporary cancer transitions, focusing in par­tic­u­lar on the shaping of the Danish cancer control plans of the 2000s. She is a board member of Dansk Selskab for Sundhedsantropologi (SundAntro), coordinator of the Master’s Degree Program in the Anthro-



Notes on Contributors 185

pology of Health, and currently steers the interdisciplinary research proj­ect Public Health at a Crossroads (PUSH) to explore the HPV vaccination controversy. Together with Claus Bossen, Henriette Langstrup, and Jeppe Eriksen, she is currently editing a special issue on patient reported outcomes for Tidsskrift for Forskning i Sygdom og Samfund. She draws on her studies on the reframing of cancer as an “acute condition” for her chapter in this book.

INDEX

Page numbers in italics refer to figures and ­tables. Aarhus, Rikke, 8, 9, 17, 174 abduction, 62, 69–74 acceleration, 9–10, 14, 16–18, 131. See also early detection interventions Adams, Vincanne, 8, 9, 55, 56, 60, 126 African American families, 49 “Agreement on Acute Action” policy (2007), 112 Agreement on Implementation of the Stated Objective of Acute Action and Clear Communication with Cancer Patients, 24 “alarm symptoms of cancer” paradigm, 17 allocation, 119, 122. See also time work Åmund, Jane, 28 anatomo-­pathological gaze, 62–63 Andersen, Pernille Tanggaard, 158 Andersen, Rikke Sand, 9, 13, 18, 73, 108 anticipation, 8–10, 44, 54–56, 112, 167–170. See also waiting times Apache, 150–151 Armstrong, David, 139 Arono­witz, Robert, 60 Baines, Joanna, 28 Banerjee, Dwaipayan, 1, 151 battlefield meta­phors, 7, 14, 32, 37 Bennington, Geoffrey, 101 Berg, Marc, 125 Berlingske Tidende (publication), 28, 29, 31, 34 biopo­liti­cal security, 8 biopolitics, 24, 36, 64, 108–109, 140, 148, 167 biopower, 7, 25, 32 bio-­sociality, 16, 88–89 biotechnologies, 101 Birth of the Clinic, The (Foucault), 17, 62–63, 64, 74n1 bladder cancer, 54, 89–90, 130 bodily trust, 62. See also trust Bogicevic, Ivana, 5, 63 Brandner, Susanne, 170, 173 Brazil, 113, 150 breast cancer, 5, 12, 29, 35, 60, 85, 131, 166, 169

Cambrosio, Alberto, 63 cancer as ghost, 16, 96–98, 99–104, 107–110, 176 cancer awareness campaigns, 12, 14, 42, 51–52, 65, 81, 149. See also early detection interventions cancer control, 2–5, 18, 43–45, 60, 131–132. See also cancer patient pathways; surveillance cancer discourse, 11, 26, 33–34, 171 cancer in­equality. See health inequalities cancer lit­er­a­ture, 5–6, 7 cancer patient pathways, 114–116, 125–126, 174; balancing hopes and fears in, 116, 117–120; customizing, 120–123; ethnographic study of, 116–117; risk and, 5; time work in, 17, 113–114, 118–119, 122–125. See also early detection interventions candy box, 1, 2 Cantor, David, 2, 3, 129 care seeking, 51–54, 62, 70, 73, 85, 175 case-­control studies, 68–69 Center for Complex Symptoms, 154 cervical cancer, 131, 147, 148–149, 159, 166, 171, 174. See also HPV (­human papillomavirus) and vaccine program “Cheapest to Let ­People Die” (Ekstra Bladet), 32 Childe, Charles P., 60 China, 177 chronicity, 6–8 Clarke, Adele E., 56 clinical sense, 102–107, 109–110 colon cancer, 7, 66, 68 colorectal cancer, 65, 67, 116, 132, 166, 171 Communism, 107 constipation, 67 contraction of the pre­sent, 138–140 control, as concept, 3 Control of a Scourge; or How Cancer is Curable (Childe), 60 COPD (chronic obstructive pulmonary disease), 140–141 Copenhagen University Hospital, 27, 31

187

188

Index

coughing up blood, 65, 66 COVID-19 pandemic, 18n4 CT scanners, as diagnostic tool, 133, 144n2, 144n5, 169, 176. See also diagnostic infrastructure Daase, Christopher, 24, 36 Danish Agency for Patient Complaints, 98–99 Danish Cancer Patient Pathways, 24 Danish Cancer Society: on Danish gap, 32, 98–99; on delays, 27, 30, 36; on HPV vaccine, 149; 6 March Meeting of, 12; on timely diagnosis, 61 Danish Council on Ethics, 135 “Danish gap,” 32, 36, 64–65 Danish Health Authority, 34, 113 Danish Regions, 154 Das, Veena, 8, 45, 50, 57 Delaplace, Gregory, 104 delays, 12, 23–25, 27, 30, 31, 170–173. See also timeliness; waiting times Delhi, India, 150, 151, 157, 177 “Denmark, a Eu­ro­pean Country Suffering from Cancer” (Weekendavisen), 31–32 Derrida, Jacques, 97, 101, 102, 103, 107, 109 diagnostic infrastructure, 130–131. See also cancer patient pathways; early detection interventions; surveillance diagnostic mill, as term, 141–142 Dijk, Kornelis van, 31 disjointed time, 102 dizziness, 52 do-­not-­delay messaging, 60–61 “do not delay” paradigm, 17 Douglas, Mary, 135, 143 Drachmann, Hans, 33–34 Dreyer, Carl F., 61 Drugs for Life (Dumit), 63 Dumit, Joseph, 63, 168 duration, 119. See also time work early detection interventions, 2–5; cancer control through, 51–52, 112; defined, 4; diagnostic infrastructure for, 130–131; diagnostic mill, 140–142; of early-­stage tumors, 66; ghost of cancer and, 16, 96–98, 99–104, 107–110; scope and, 15, 129; symptom awareness, 3, 45–46, 62, 64–65, 74; timeliness of, 112, 120, 125, 167, 168, 171,

173, 177; waiting times and, 29–30. See also cancer awareness campaigns; cancer patient pathways efficiency, 134–135 egalitarian individualism, 80 egalitarianism, 79 Ekstra Bladet (publication), 27, 32 Elverdam, Beth, 159 embodiment and perception, 173–174 entanglements, 15, 17, 45, 48–49, 88, 90 epigenet­ics, 69. See also ge­ne­tics and disease Esbjerg Central Hospital, 29, 30 escalation, 173–176 ethics of good care, 117, 118 expansion, 5, 14–16, 25, 61, 65–67, 96 fast-­track cancer diagnostic pathways, 3, 12, 52, 54–55, 65 financial security, 47–48. See also middle-­classness Flaherty, Devin, 9 Flaherty, Michael, 17, 122, 114 Foucault, Michel, 7, 13, 32, 62; The Birth of the Clinic, 17, 62–63, 64, 74n1 Frank, Arthur, 28 “­free choice of hospitals” program, 27, 33 Freud, Sigmund, 109 Frumer, Michal, 7, 17, 140, 169 Gad, Emma, 97 gaming the system, 123 Gardasil, 148, 162n3 general prac­ti­tion­ers (GPs): as gatekeepers of health care system, 44, 64, 72, 74, 98, 104, 155, 172; ghost of cancer and, 96–104, 108; gut feeling (clinical sense) of, 102–107, 109–110 ge­ne­tics and disease, 6, 63–64, 169. See also epigenet­ics Germany, 11, 170, 173 ghost of cancer, 16, 96–98, 99–104, 107–110, 176. See also uncertainty Gibbon, Sahra, 5–6, 63, 113, 132 GLOBOCAN, 32 Good, Byron, 80 Gordon, Avery, 104 Greco, Cinzia, 7 Greenland, 175 Gullestad, Marianne, 15, 79, 80, 84 gut feeling, 102–107, 109–110

Hägglund, Martin, 109 Hamilton, Willie, 67 Han, Clara, 45 Hanne, 69–70, 72, 73 Harris, Fiona, 7 Harrison, Stephen, 112 Hay, Cameron, 73, 182 Health Act (2005; Sundhedsloven), 33 health care system and cancer, 11–13; anticipation and, 54–56; citizens’ management of, 51–53; as gatekeeper system, 44, 64, 72, 74, 98, 104, 155; patient silencing in, 148, 150–151, 155–162; safety and security in, 134–135; waiting times, 12, 23, 25–27, 33. See also welfare state health inequalities, 10–11, 80–85, 88, 90–91, 166, 167. See also social in­equality Heinsen, Laura Louise, 7, 132 “He Is Waiting with Cancer in His Body” (Politiken), 23 hemoptysis, 65, 66 herd immunity, 148, 160. See also HPV (­human papillomavirus) and vaccine program Herlev County Hospital, 29, 33–34 Hjerteplanen, 26, 27 Højlund, Susanne, 79 homogeneity, 78 hospital waiting times, 25–27. See also waiting times hostility. See silencing HPV (­human papillomavirus) and vaccine program, 12, 16, 147–162, 171, 174 ­human genome, 69 i­ magined sameness, 80 incurability, 60 India, 150, 151, 157, 177 individual health model, 63 Ingold, Tim, 107 instable knowledge, 68–69, 70, 72, 74, 176 “in the meantime,” as concept, 7–8. See also chronicity intranational medical care, 11 Italy, 11 Jain, Lochlann, 4, 97, 112 Keating, Peter, 63 Kessler, Oliver, 24, 36 kinship knowledge, 6

Index 189 Kleinman, Arthur, 55 “Know the Seven Signs” campaign, 14, 42, 65. See also cancer awareness campaigns Kræftplanen, 26, 36 KRAM ­factors, 84 Kristensen, Benedikte Møller, 15, 72, 170, 176 Lakoff, Andrew, 8, 37, 113 Lanceley, Anne, 5–6 Larsen, Lars Thorup, 27 life expectancies, 11 Livingston, Julie, 1, 87, 172 Lock, Margaret, 68, 69, 88 low-­but-­not-­no-­risk symptoms, 67 Löwy, Ilana, 5, 63, 129, 131 lung cancer: detection of, 129–130, 132–134; early symptoms of, 65, 66; standard time regimen for, 115; survival rates in, 11; testing for, 8, 117 Lynch syndrome, 7, 132 mammography, 29–30. See also breast cancer; early detection interventions Manderson, Lenore, 5–6, 18, 68, 174 Martens, Marianne, 27–28 Marxism, 107 mass health model, 63 Massumi, Brian, 55 Mattingly, Cheryl, 49 medical anthropology, 45 medical behavioral sciences, 80 medical travel, 11 Merleau-­Ponty, Maurice, 173 Merrild, Camilla Hoffmann, 8, 10, 15, 46, 174 middle-­classness, 15, 46–51, 57, 84 morphological prediction, 5 morphological risk, 129 Murphy, Michelle, 56 “My Long Journey ­Toward a New Life” (Martens), 27–28 National Cancer Plan (Kræftplanen), 26, 36 National Health Ser­vice (UK), 66 National Heart Plan (Hjerteplanen), 26, 27 Nebelong, Henrik, 23, 34–35 neoliberalism, 98 Nielsen, Stine Hauberg, 15–16, 171–172 Nissen, Nina, 97, 133 NORDCAN, 32

190

Index

Offersen, Sara Marie Hebsgaard, 1, 10, 13, 15, 84, 113, 172 “One Entrance” program, 154–155 ordinary ethics, as concept, 8, 42, 45, 57 ordinary living, 46–51, 84. See also middle-­classness ovarian cancer, 12, 66, 131, 170, 173 pack journalism, 34 Pedersen, Kirstine Zinck, 124 Pedersen, Lea Bay, 33–34 Pedersen, Leif Vestergaard, 98 Pérez, Ignacia Arteaga, 5–6, 63, 119 Politiken (publication), 23, 24, 33, 97 polyvocal ethnography, as term, 167 population screening programs, 52. See also early detection interventions population statistics, 10, 61 postcoital bleeding, 66 Prainsack, Barbara, 125 predicting cancerous ­futures, 131–132. See also cancer control; uncertainty predictive health care complex, 18n1 prophylactic surgeries, 85, 129, 169 prostate cancer, 35, 51, 53–54, 57, 101, 166 public health, defined, 92n3. See also health care system and cancer public policies. See health care system and cancer pulmonary nodules, 130 radiotherapy, 28, 31, 34, 169. See also early detection interventions Rasmussen, Anders Fogh, 12 Rasmussen, Lars Løkke, 34 rectal bleeding, 66 Research Clinic for Functional Disorders, 154 research methods, 24–25, 62, 78, 99, 116–117, 133 Risør, Mette Bech, 73, 97, 133 Rosa, Hartmut, 61, 131, 138, 143 safety and security, state priorities of, 134–135 sameness, 78, 79–80, 86 Schmidt, Anders Legarth, 35 Schmidt, Johann Jacob, 1, 4 Schoenfeld, Naomi, 6 scientific bureaucratic medicine, 112 Second Chances (Whyte), 167

sensations, 15, 43, 44–45, 52–53, 72–74, 86–88, 98, 104, 138–139 Sheriff, Robin E., 150 Sidenius, Anne, 124 silencing, 148, 150–151, 155–162 ­silent killer concept, 4 Simon, 89–90 Simone, 153 6 March Meeting (2007), 12 social in­equality, 78–79, 80–82, 91–92. See also health inequalities Søren, 101 Sørensen, Tina, 158 Steensgaard, Pernille, 31 Stephan, Christopher, 8 Stewart, Kathleen, 55 Stoller, Paul, 7 Stolper, Erik, 107 Stone, Deborah, 27 Storm, Hans, 11, 31, 32 Sundhedsloven (2005), 33 surveillance, 7, 17–18, 129, 134–135, 138–142. See also cancer control; cancer patient pathways surveillance medicine, as term, 139 survivorship, 6–8 Svendsen, Mette Nordahl, 6, 132 symptomatic vs. asymptomatic diagnostic testing, 133–134. See also cancer awareness campaigns; early detection interventions symptom awareness, 3, 45–46, 62, 64–65, 74, 113 tamoxifen, 5 throat cancer, 33–34 timeliness, 112, 120, 125, 167, 168, 171, 173, 177. See also delays; early detection interventions time work, 17, 113–114, 118–119, 122–125 Timmermans, Stefan, 125 Tofte, Myrna, 29–30 Tørring, Marie Louise, 9, 12, 17, 25, 43, 98, 167 trust, 60–62, 73, 134–135, 159 uncertainty, 9, 24, 26, 50–51, 54–55, 57, 73, 110, 135–138. See also ghost of cancer; predicting cancerous ­futures United Kingdom, 66, 67, 104 United States, 7, 11, 48, 49 universal health care coverage, 10 universality, 78, 79

universal normal body, 69, 79–80, 86–87. See also sameness Urciuoli, Bonnie, 48 Vaccinated Girls, The (film), 154 vaccine program. See HPV (­human papillomavirus) and vaccine program Van der Geest, Sjaak, 45 Vera, 100, 102 vigilance, 113, 125, 175 visibility, 173–176 “Waiting a Bit Longer Is Not Very Dangerous” (Berlingske Tidende), 31 “Waiting for a Cancer Examination Proved Fatal” (Tofte), 29

Index 191 “waiting time paradox,” as concept, 24, 36 waiting times, 17; contested risks of, 29–33; four-­week rule for, 33, 34; as part of “new” cancer, 27–28; public policy on hospital, 25–27, 33; scandal of, 12, 23, 29–30. See also anticipation Weber, Max, 109 Weekendavisen (publication), 31 welfare state, 10, 78–79, 84. See also health care system and cancer welfare-­to-­work schemes, 79 Western Apache, 150–151 Whyte, Susan Reynolds, 167 “­will to health,” 43, 55, 56 Wood, Bruce, 112 World Health Organ­ization (WHO), 11