Cancer Entangled: Anticipation, Acceleration, and the Danish State

By Stine Hauberg Nielsen, Michal Frumer, Sara Marie Hebsgaard Offersen and 4 more

Cancer Entangled explores the shifts that took place in Denmark around the millennium, when health promoters set out to minimize delays in cancer diagnoses in hope of improving cancer survival. The authors suggest a temporal reframing of cancer control that emphasizes the importance of focusing on how people – potential patients as well as health care professionals – experience and anticipate cancer before a diagnosis or a prediction has been made. This argument compellingly challenges and augments anthropological work on cancer control that has privileged attention to the productive role of science and technology and to life with cancer or cancer risk. By offering rich ethnographic insights into the introduction of the first cancer vaccine, cancer signs and symptoms, public discourses on delays, social class and care seeking, cancer suspicion in the clinic, as well as the work on fast-track referral – the book convincingly situates cancer control in an ethical registrar involving attention to acceleration and time, showing how cancer waiting times become an index of the "state of the nation".

• Language: English
• Publisher: Rutgers University Press
• Release date: Apr 14, 2023
• ISBN: 9781978826861

Book preview

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 matter 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). Today, 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 will 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 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).

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

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 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 because 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)

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 those at risk and those 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 people 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 silent 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 earlier 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 contemporary 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 were 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 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 sociopolitical, 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 people 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 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 shaped by broader sociopolitical factors, biology, and the intimacies of close social relations (Greco 2021; Sargent and Benson 2019). This literature also highlights the various processes 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 metaphors 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 process 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 ambiguities and flexibilities that characterize people’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 people reflect on and continuously adjust their social relations and visions of the good life and the everyday. Inspired by Veena Das and others 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 people 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 future disasters into the present 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 future 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 will 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 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 particular, 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 will 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 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 these 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 MATTER

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 were undergoing treatments for cancer. Extrapolations suggest that the numbers will 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