Anthropologies of Cancer
Anthropologies of Cancer
- Nickolas Surawy-StepneyNickolas Surawy-StepneyKing’s College London
- and Carlo CaduffCarlo CaduffKing’s College London
Cancer is a relatively new subject for the discipline of anthropology, but scholarship on the topic has already yielded a distinct and important body of literature. In biomedical terms, cancer can be thought of as the wide range of conditions characterized by the uncontrolled (and ultimately pathological) proliferation of cells. It is a disease that is responsible for the deaths of millions of people worldwide each year. As such, it is the focus of a vast number of discourses and practices in multiple areas, ranging from scientific research and media discussion to health insurance and government regulation, to name just a few. Anthropologists concerned with cancer typically use the methodology that is a hallmark of the discipline, long-term ethnographic fieldwork, in order to investigate these discourses and practices. This involves conducting participant observation among doctors, patients, nurses, family members, scientists, politicians, policymakers, and pharmaceutical representatives.
Cancer is examined as a lived experience, revealing the numerous ways that local, regional, national, and transnational histories and politics shape the embodied realities of disease. Anthropologists also investigate the regimes of risk and statistical analysis to which bodies are subjected and the technologies around cancer, such as methods of screening or vaccination that aim to prevent it and the different ways in which these and other interventions and technologies fit into—or push uneasily against—the local words in which they are implemented. Anthropologists aim to look beyond the problem as simply one of biology and medicine, instead investigating cancer as pervasive within multiple dimensions of social, cultural, political, and economic life. Anthropological studies displace the prominent biomedical notion that cancers are the same in diverse locations and reveal the incoherence and intractability of cancer as an object. In paying close attention to this object in varied settings, anthropologists offer a critical account of discourses and practices that destabilize and decenter some of the assumptions on which global oncology is based.
- Sociocultural Anthropology
Cancer as a Field of Anthropological Research
Anthropologists have highlighted cancer as one of the defining diseases of the early 21st century. Cancer is a huge global public health problem. According to a factsheet produced by the World Health Organization (WHO), cancer killed around 9.6 million people in 2018, making it the second leading global cause of death.
In their work, anthropologists have turned their attention to a variety of aspects in a diverse set of locations. This work has shown the sheer breadth of cancer as a cluster of pathological conditions, highlighting the ways in which it has infiltrated dimensions of life far beyond simply that of biology and medicine. One does not have to be a cancer patient, or even to have known a cancer patient, to have interacted with or been confronted by one of cancer’s many incarnations. The disease screening initiatives, the charity appeals, wristbands and marathons, the news stories announcing a newly discovered risk factor or cure, the books and the films depicting the disease: these are all disparate threads of cancer’s rapidly expanding web. These many incongruent threads converge on a single noun, “cancer,” giving it what McMullin and Wiener (2008) term an “excess of meaning.” Such is cancer’s ubiquity within expert and common discourse, policy decisions, and personal narrative, it has been labeled a “total social fact” (Jain 2013, 13, drawing on Mauss  1966). Cancer, as Lochlann Jain argues, is everywhere and nowhere.
The deaths that result from cancer are not evenly distributed. As the WHO reports, 70 percent occur in so-called low- and middle-income countries (WHO 2018). Further, the range of cancers prevalent in different parts of the world is variable. Take, for example, the difference in breast and cervical cancer incidence. Breast cancer is most prevalent in the resource-rich areas of the globe: Europe, Australia, and North America. According to a study conducted in 2008, the incidence of breast cancer in Western Europe was almost five times that of Eastern Africa, while the reverse was shown to be the case for cervical cancer—frequently caused by the human papillomavirus (Vineis and Wild 2014). Thus, cancer is diverse—people residing in the Global South are more likely to be exposed to environmental pollutants and are disproportionately affected by cancers that are secondary to infections (e.g., those of the stomach, liver, and cervix). Anthropologists have highlighted the varied experiences of these differently distributed cancers, and argue against the dominant narrative of (breast cancer) survivorship so prominent in the Global North, which, Bell (2014) argues, has become a standard against which the experiences of other cancers are now judged (Matthews and Burke 2015).
The editors of a collection of essays on the anthropology of cancer, published in 2015, argue for a “transnational approach” in the study of the disease, one that “helps correct both the ethnocentric nature of many biomedical assumptions encoded in international health initiatives and to illuminate the particular needs of local populations living within highly diverse political, social and economic systems” (Matthews and Burke 2015, 29). The world of cancer is a complex and confusing one in which certainties and uncertainties are ever expanding. What anthropological studies reveal is the incoherence and intractability of cancer as an object. In examining this object, anthropologists aim to localize and multiply cancer discourse in order to “combat the paternalism at the heart of many international health practices and also as a way to deconstruct some of the implicitly ethnocentric assumptions about the nature of cancer and the practice of oncology” (Matthews and Burke 2015, 2).
As a field of research, the anthropology of cancer involves interaction with many different actors, from doctors, patients, nurses, and family members to scientists, politicians, policymakers, and pharmaceutical representatives. Anthropologists are committed to long-term ethnographic fieldwork conducted among the communities they are studying. Those investigating cancer are no different. In this way, their research is distinct from others in the social sciences or public health. For anthropological scholarship, cancer is always more than just cancer; it is an entry point for a broader investigation of science, medicine, media, and the state, with a focus on questions of power and knowledge, modernity and rationality, culture and capitalism, race and gender, and justice and inequality.
We cover some of the most important questions that anthropologists have addressed in studies of cancer. After a note on statistics, we turn to debates over risk and responsibility: Who is obliged to monitor and reduce risk factors, be they environmental or genetic? What are the perceived risk factors for cancer in different locations? We then continue with a discussion of the literature that covers cancer symptoms, addressing questions such as: What do people interpret as warning signs of potential disease? When (if at all) do individuals seek medical help? We then move on to cancer socialities and cancer narratives, technology and care. What are the implications of technology in the Global North, and how do technologies such as vaccines and genetic testing alongside other modes of screening travel?
While most of this work concerns the Global North where anthropological engagement with cancer began in the early 2000s through the examination of metaphor (primarily that of “war” in North America), throughout this article we also engage with the work that covers the Global South. This is central to the attempts made by anthropologists to destabilize and decenter cancer discourse, and as such, in the final section we turn explicitly to that which takes cancer in the Global South as its object.
Statistics pervade the world of cancer. From global incidence rates to individual prognoses, these figures are ubiquitous throughout the discussion of the cluster of diseases that we have come to know as cancer. Note the following, taken again from the World Health Organization’s Cancer Factsheet (2018): here, statistics are used to demarcate and define the problem (“Cancer is the second leading cause of death globally, and is responsible for an estimated 9.6 million deaths in 2018”), locate it across countries (“Approximately 70% of deaths from cancer occur in low- and middle-income countries”), and point to causes (“Around one third of deaths from cancer are due to the 5 leading behavioral and dietary risks: high body mass index, low fruit and vegetable intake, lack of physical activity, tobacco use, and alcohol use”). As McMullin (2016) notes, anthropologists of cancer also use these kinds of statistics to illuminate the scale of the problem and provide justification for their work, as we have done in our introduction. However, critical research also aims to investigate the statistical claims themselves in order to shed light on what they do and do not reveal.
Central to the prominence of statistical evidence is the rise of “evidence-based medicine” (EBM), a practice in which an aggregation of the “best available evidence” provides the basis on which to make medical decisions (thus decreasing reliance on expertise, experience, intuition, and tacit knowledge). Scholarship investigating EBM has pointed to this shift in the hierarchy of information, noting that the supposed cleanliness of knowledge generated in this way is used to justify its place at the top of the information hierarchy (Lambert 2009). Anthropologists have also noted the overtly moralistic tone often taken in relation to lifestyle factors, supposedly based on objective statistics (Bell, McNaughton, and Salmon 2011)—note the behavioral and dietary risks outlined in the WHO factsheet—and the often ambiguous grounds on which these predictions are based (Bell and Ristovski-Slijepcevic 2015). These scholars suggest that evidence-based statistics are not always benign, value-free entities. On the contrary, statistics are often value laden, embedded within particular social and political contexts, and espouse the morality of certain ways of being and behaving.
As Adams in her work on metrics notes (2016), when so much in the world of global health is determined by large transnational organizations committed to the idea of EBM, such as the Bill and Melinda Gates Foundation, the Institute for Health Metrics and Evaluation, and the Global Fund, this raises a question of sovereignty: “what do we call it when a sovereign nation’s ability to govern becomes increasingly dominated not just by the regimes of development aid that reiterated its national borders (indeed its right to national forms of knowledge) but by those that aim to transcend these borders?” (Adams 2016, 7).
Returning to the level of lived experience, anthropologists have also given careful thought to the very meaning of statistics in the field of cancer, particularly in relation to prognoses. Aggregate statistics taken from vast patient populations, stratified by factors such as age and stage at diagnosis, formulate the medical crystal ball and can give a patient “living in prognosis” (Jain 2013) an anchor from which to rebuild notions of narrative and timeline. However, as Jain (2013) notes of prognosis, “its stunning specificity (‘34.7%’) shields the bloodlessly vague platitude: in five years, you, yourself, will be either dead or alive” (29).
Statistics direct notions of risk and engage with particular questions. Are we all at risk? Are some people at greater risk than others? What can we do to modify these risks? Anthropologists tend to articulate the questions somewhat differently. What are the consequences of being labeled “at risk”? What does it mean to have a 34.7 percent chance of survival? How does one live with the misleading specificity and concreteness of such numbers when one, in fact, either survives or doesn’t? Why are “life-style behaviors” constantly highlighted in statistical studies, while environmental pollution continues to remain in the background? What, in fact, are the politics of statistics?
Locations of Risk and Responsibility
With advances in medical science and genetics, there has been a tendency in the biomedical literature to explore cancer risk in ever-more individual, molecular terms (Hallowell 1999; Konrad 2005; Lock and Nguyen 2010). Genes that code for particular proteins involved in cell signaling pathways can be isolated, and the oncogenic influences that mutations in these genes exert on cell function and proliferation can be determined. The outcome of this genetic, deterministic discourse is to locate risk and responsibility within the individual. This discourse renders it the responsibility of the individual (as a potential carrier of “faulty” genes) to undergo testing (Hallowell 1999) and, depending on the results, decide what to do to mitigate risk. The “genetic foreknowledge” (Konrad 2005) generated through this testing brings options, including pre-emptive surgeries, such as mastectomy, to the fore, as well as initiating decision-making about procreation and family. The BRCA mutation (a mutation in either of the tumor-suppressing genes BRCA1 or BRCA2), implicated in the development of breast cancer, is a pertinent example. Despite being involved in only 5 to 10 percent of breast cancer cases (Lock and Nguyen 2010), this gene has been shown to motivate risk-modifying behaviors, driven partly by notions of responsibility and care toward kin (Gibbon 2006). As Hallowell (1999) noted, British women with a family history of cancer attending a genetic testing clinic felt that it was their responsibility to know their BRCA status, as only with this information could they modify the risks faced by themselves and their relatives. The moral duty to be informed about their BRCA status appeared to outweigh any notion of a “right not to know”; one participant stated “this daughter that I had adopted I wouldn’t generally contact at all because I don’t even know if she knows she’s adopted. . . . But if I’d been told there was a very great risk, and if I happen to get it, I would find some way of passing the information on, because I would feel that’s a moral duty really” (Hallowell 1999, 607). Thus, this “moral decision-making” (Konrad 2005) enacted across generations highlights the fragile position of individual autonomy within contemporary genetic testing. This autonomy, when presented within this individualizing discourse of risk, seems at times secondary to the duty to discover one’s genetic variance.
Anthropologists have also looked closely at the meanings of risk in the cancer field. Gifford, in her 1986 chapter, “The Meaning of Lumps,” provides an important example. Here, in relation to breast cancer, she disentangles the multiple meanings of the term “risk” as it is used by three pertinent groups—epidemiologists, clinicians, and lay women. For the epidemiologists, she argues, risk is something objective, technical, to be discovered through the process of scientific investigation. For the women comprising the populations that they study, however, risk is a lived experience, something suffered. A diagnosis of benign breast disease (considered a risk factor for breast cancer) “can serve to make the possibility of future illness a physical reality. When a woman is diagnosed with benign breast disease, she is thrown into a liminal state of being at risk, of being suddenly neither healthy or ill” (Gifford 1986, 233).
If epidemiologists produce the scientific risk factors and patients experience lived risk, clinicians bridge the gap between the two. In relation again to benign breast diseases, Gifford writes:
On the one hand, they represent the objective existence of risk factors for breast cancer. On the other hand, benign breast conditions represent the clinician’s lived risk of failing to diagnose or predict a cancer. Thus, because it is not clear which kinds of benign conditions might be more pre-malignant than others, and because the presence of lumps can camouflage a small underlying cancer, clinical risk takes on both an objective and a lived, or experiential, dimension.(Gifford 1986, 222)
Given the permanent uncertainty around the use of risk factors in predicting cancer on an individual level, Gifford ultimately uses this reasoning to make a point about medicalization. If a patient has a benign condition that increases the risk of cancer, their doctor is left uncertain as to the eventual outcome and deals with this uncertainty by consistently monitoring for changes. The patients themselves, uncertain whether they are healthy or ill, are left in a state of limited control and thus submit to surveillance.
While some anthropological work has focused on analyzing the new regimes of risk brought about by genetics, other anthropologies have set about attempting to displace the individual as the site of responsibility altogether. These studies point to factors such as industrial pollution and governmental ambivalence, along with broader social inequalities and structural violence as key factors underlying high cancer rates (Davis 2007; Farmer 2004; Jain 2013; Michaels 1988). This work shows not only how the responsibility for the avoidance of carcinogens has been placed on the shoulders of the individual, but also how at times profit has been made from this move. David Michaels (1988) illustrates this with a case from the US dye industry. He argues that despite knowledge circulating regarding the link between occupational exposure to dyes in US factories and high levels of bladder cancer, it wasn’t until “the human cost became so obvious that it was no longer possible to ignore” that action to mitigate exposure was taken. Jain (2013) also turns to this industrial ambivalence in the United States when she notes that a frequent component of plastic food wrapping (bisphenol A) has been found to be associated with breast cancer, yet its presence in packaging does not even require a warning label. She writes: “Women can undergo patented genetic testing that costs upward of $5,000, while analyzing breast tissue for chemical carcinogens is virtually unheard of, and is certainly not paid for by insurance companies, despite studies that have shown that breast tissue around tumors often has a higher level of carcinogenic material, to which siblings and other community members may also have been exposed” (Jain 2013, 80). The regulatory unwillingness to place responsibility on industry, combined with a discourse that espouses the benefit (and moral necessity) of genetic testing, leads these authors to assert that responsibility has been placed in the hands of the individual and that profit has been placed above public health.
Yet the exact source of carcinogenic responsibility is not always perceived as being either the state or the individual. These two locations of risk coexist in conceptions of the origins of cancer. Anna Lora-Wainwright (2009, 2010) conducted ethnographic research into the perceptions of cancer etiology in rural China. Her work has revealed that blame can be assigned to many different sources, depending on context: “The focus falls on the state when the supposed case is water pollution; on the family context when it is hard work; and on the market when farm chemicals contaminate food” (Lora-Wainwright 2009, 56). In this case, she suggests, it is not simply biomedical evidence or the state that informs the “contours of biological citizenship.” Instead, these factors inform, and are informed by, social and personal experiences on which people draw when making sense of the appearance of cancer in their midst.
In some social examinations of cancer risk, factors such as environmental and industrial pollution, agricultural pesticides, and so forth are conspicuous only by their absence. Heather White and colleagues (2012) examined the perceived causes of cervical cancer among a sample of Zambian women to find that the most commonly cited causes related to sexual behavior. These included the use of particular herbal medications to increase the pleasure of sexual intercourse (notably for men) and sexual promiscuity. One of their respondents noted: “Cancer comes about if a woman is having sex with different men because the sperms of men mix and this brings cancer” (White et al. 2012, 1489). It is worth noting the lack of risk attributed to environmental contaminants here, as these participants were drawn not from rural communities isolated from the visual manifestations of modern pollution, but from groups residing in the outskirts of Zambia’s capital city, Lusaka. This study serves to show again the deeply rooted social and medical worlds in which cancer exists. As in Lora-Wainwright’s work (2009, 2010), these informants do not allow biomedical information to become the sole source of their understandings but incorporate this information with local conceptions of cancer responsibility and risk.
Symptomatology and its relation to disease is far from universal. Involved here are questions of interpretation, technology, and practice: At what point does a sensation become a symptom? What underlies the decision to act on certain symptoms and seek help? What is the role of medical technologies in rendering symptoms legible?
In Rwanda, “patients view cancer and infection as co-existent and processually intertwined” (Djordjevic 2019). Djordjevic suggests that this coexistence reflects the epidemiological reality on the ground, “as the local burden of disease encompasses both infectious and noncommunicable diseases” (553). When symptoms appear, patients are typically initially tested for infections. Unger-Saldana and Infante-Castaneda (2011) illustrate another local symptomatology through their investigation into breast cancer treatment delay in Mexico. Many of their respondents did not attribute lumps in their breasts as signs of disease, but instead regarded them as one of many “normal changes.” Likewise, Brandner and colleagues (2014) found that for many ovarian cancer patients in Germany, the initial changes were perceived to be simply the results of aging: “I thought, you have really gained weight. Yeah, let me put it like this, because I did not have my period anymore, for me it was just an age flab. . . .perceived it as normal.” What some may regard as warning signs were in this case integrated into a new conception of normality (Brandner et al. 2014), obscuring the need to invite specialist help. Again, these examples show that cancer risk is independently perceived, distinct from the presence or absence of biomedical signs (Chavez et al. 1995; Kerr et al. 2018).
Conversely, medical technology can be responsible for bringing subjectively healthy individuals into the realm of the symptomatic by rendering previously unseen and unexperienced signs visible (Blomberg et al. 2009; White et al. 2012). In women undergoing cervical cancer screening in Sweden, Blomberg et al. (2009) showed how the increase in medical attention experienced throughout screening brought the bodies of these women “into view” (Kerr et al. 2018). Given that false positives are an inherent part of screening, these technologies can also therefore result in overdiagnosis and overtreatment.
In her ethnography of a cancer ward in Botswana, Livingston (2012) writes: “though cancer produces moments and states of profound loneliness for patients, serious illness, pain, disfigurement, and even death are deeply social experiences. Understanding cancer as something that happens between people is critical to grasping its gravity” (Livingston 2012, 6). In the anthropology of cancer, disease can be thought of as not only something that afflicts and exists within one person (as it would in dominant biomedical models), but as a social phenomenon scattered among people and institutions. As a social force, cancer has the power to exclude, marginalize, and stigmatize. The ways in which cancer implicates and molds sociality—the ways in which people live with, against, and without each other—has been important to the anthropological study of the disease.
Family members of a person diagnosed with cancer are often immediately implicated. Anthropologists have shown the ways in which kinship and household networks influence the experience of care and the implications this disease can have for these networks. Upon diagnosis, Bright (2015) shows how, in South India, the immediate reaction upon discovery of symptoms of incidence or recurrence may be the act of concealment. In an environment in which treatment is expensive and money scarce (and where what money there is goes toward food or is saved to put toward “socially recognized goals” such as weddings), this concealment can be understood not as duplicity but as a form of care, intended to spare kin from financial and emotional hardship (Van Hollen 2018). Despite the initial secrecy, however, upon wider knowledge of the disease, Bright’s ethnographic subjects drew close to their suffering relative, Bright explaining this by drawing on Marshall Sahlins’ (2013) notion that kinship is seen not as a shared material but as a “mutuality of being.” The interests of one are the interests of all: “the family goes through treatment, too” (Bright 2015, 147). However, as Banerjee shows in his important work, this image of care and the family is both normative and idealistic, for cancer can have catastrophic consequences for social relations, intensifying painful histories of violence, abuse, and neglect (Banerjee 2019a, 2019b).
Cancer can cut along dividing lines, changing social worlds and assigning people to normative socialities to which they did not realize they belonged or to which they did not wish to be assigned. Anthropologists such as Aureliano (2015), Jain (2013), Luxardo (2015), and Manderson (2010, 2011) have noted the gendering of the disease. Jain, like many others, discusses this in relation to breast cancer. Citing the work of literary theorist Eve Kosofsky Sedgwick (1992) on her breast cancer diagnosis (“Shit, I must really be a woman”), Jain notes how it is “. . .breast cancer—not the breast itself” (69) that aligns Sedgwick within the implied confines of femininity. The vibrant pink paraphernalia that almost invariably accompany the mention of this cancer subtype, be it in the form of ribbons, badges, or T-shirts, serve to add to the gendered nature of this disease. Lenore Manderson, too, writes of the implications of disease on notions of gender. But in contrast to Jain, Manderson presents the disease, particularly in relation to breast cancer (Manderson 2011) and gynecological disease (Manderson 2010), as a disruption to a gender identity already fully formed:
embodied disruptions unsettle women’s own sense of womanhood and femininity even in highly privileged industrialized settings, where we might expect that gender-based interpretations of illness and their social outcomes have been ironed out. But gender is an intransigent variable . . . faced with bodily dysfunction, women see themselves as only “half a woman.” (96–97)
Akin to Manderson, Aureliano’s (2015) work in Brazil indicates that women of working-class and middle-class families affected by cancer reaffirmed their feminine identities by quickly returning to their roles in the home or places of work. In so doing, they were placing emphasis on their identities as daughters, wives, and mothers and displacing that of sexuality—usually the center of female identity in dominant Brazilian discourse. And in so doing, they rejected biosocialities that “they felt reduced them to a breast” (Matthews and Burke 2015, 14).
Anthropologists have argued, however, that it is not just the disease itself that becomes gendered. The provision of care outside of hospital environments has also been examined. Luxardo (2015) conducted research among caregivers in Argentina where the lack of resources meant that care for the terminally ill was expected to be largely carried out at home. Her ethnographic research revealed that, in continuation of domestic roles, it was often the women who took on the role of caregivers. Given that these were tasks for which they were largely unprepared, Luxardo recorded at times their frustrations and resentments, providing a nuanced picture of the realities of care (see also Caduff 2019).
Knowledge can play a defining role in the social experience of cancer. In Western industrialized countries, we tend to assume that knowledge works in people’s favor. Patients are given much of the available information on their disease, from type and location to prognosis, from which they are expected to make informed, rational decisions about their options (what Mol  describes—in refuting its high regard—as a “logic of choice”). Yet ethnographic work has shown that this notion of individual patient empowerment through knowledge is often overstated and that people react to cancer diagnoses in varied and sometimes unexpected ways. Work conducted in Denmark displayed how, for those suffering endometrial cancer, the diagnosis maintained a strong association with death despite attending doctors considering the disease to be “good,” that is, associated with a favorable prognosis (Sidenius et al. 2019). The same holds for those of poor or marginalized status around the globe (Bright 2015; Macdonald 2015). To give an example, Macdonald’s (2015) ethnographic work in Mumbai displayed the diversity in perceptions of cancer etiology. If a perceived cause of cancer is a moral transgression, it follows that the sufferer must have transgressed. Macdonald shows how a diagnosis of cancer can be a stain on an individual or family, and thus how spreading knowledge regarding a cancer diagnosis may not empower a patient, but instead lead to stigma and isolation. Social grouping based on biology is rejected, yet volunteer survivors support those newly diagnosed and undergoing treatment without forming collectives based on shared medical categories. People do not always want to know. The anthropological study of cancer shows that not only the physical body but also sociality is at stake.
A cancer diagnosis can reorganize histories and throw futures into doubt, and not only for the patient who is facing a life-threatening condition. Who, for example, will accompany a patient to the hospital if it is a long distance away? How will treatment be paid for? How will children be cared for? These questions demonstrate the new and unsettling worlds into which people are thrust with a cancer diagnosis as narratives tied into social and individual expectations rapidly fall apart.
Writing on illness narratives is frequently autobiographical (Frank 1995; Jain 2013; Stoller 2004) and relates the new subjectivities, experiences, and goals of those whose lives have been called into question by serious disease. In his work, sociologist Arthur Frank (1995) examined illness narratives, a subject with which anthropologists continue to engage. He argued that construction of a new narrative (he divides these into “restitution,” “chaos,” and “quest” types) can serve to salvage the body from the world of biomedical expertise, to which it was given upon diagnosis, and return it to the patient. While the patient may inhabit the same body as before diagnosis (with a bit of leeway given for treatment), the narrative most likely will have changed to account for the new realities. Expected lifespans will have been subjected to a barrage of statistical projections in which the effectiveness of treatment and the possibility of recurrence will have been estimated. Narratives adjust accordingly. As Jain (2013) points out, however, these may no longer be in step with normative expectations. In capitalist systems of accumulation, one is expected to work and save throughout much of one’s adult life in order to enjoy a retirement often subsidized by the state. Lifespan in these settings becomes both a “financial and moral calling” (Jain 2013, 57). This trajectory can be shattered by cancer (particularly in cancers of the young), as death becomes not distant but proximal.
These often personal accounts reveal the ways in which patients cope with illness but can also reveal truths about the norms and institutions with which they interact. In his account of his lymphoma diagnosis, Paul Stoller (2004) writes of how his memories of working with witch doctors in West Africa helped him through his illness. In the worlds in which these witch doctors existed, illness was commonplace and so accepted and dealt with through patience and clarity. This is in contrast with his experience of Western medicine where illness was something to be eradicated, discussed via an arsenal of military metaphors—the “war” on cancer and the “magic bullet” are but two examples. As Manderson (2015) notes, these metaphors often stem from fear: “Metaphors of war rally the troops to fight a common enemy—they are the victory metaphors in the face of tropes of agony and defeat” (242).
Given the prominence of American survivorship discourse in the cancer world, cancer narratives often articulate conventional tropes built around hope, willpower, sovereignty, and survival. In reference to Lance Armstrong and the “Livestrong” campaign, for example, Jain (2013) highlights the overstated prominence of patient agency in cancer survival, narratives that in part stemmed from Armstrong’s well-known battle with the disease. The implication that a determined patient can beat the disease belies the realities of many cancer prognoses and provides an overt moralism to questions of survivorship. This focus on the centrality of willpower “propagates the myth that everyone has the potential to be a survivor, deaf to the reality that ‘survivor’ implies, in the final analysis, ‘dier’” (Jain 2013, 54). Conventional illness narratives are also questioned in Harris’s (2015) work in the United Kingdom where the majority of people now die in hospitals and hospices. Here, she argues, the fear of dying is an important but often unvoiced aspect to the experience of cancer and terminal illness, subjugated by the dominant scripts of heroism and survival. “The foreclosing of narratives related to fears of death and dying” she writes, “appears to perpetuate the widespread inability of postmodern selves to engage with this talk” (237). Harris contrasts this with the voiced experiences of pain and suffering related to cancer in Kenya (Mulemi 2015), noting that “in Scotland our voices are muted by a sense that we must bear our suffering silently” (238).
However, anthropologists have also offered a more fundamental critique to the dominant understanding of illness narrative (Das 2015; Mulemi 2015). Veena Das’ work among Delhi’s urban poor reveals that the restructuring of events and expectations during times of sickness did not take the form of an ordered narrative. “The disordering of narrative is part of the sense of bewilderment about what it means to have this illness in this body” (Das 2015, 28). The concept of illness narrative and the focus on meaning have placed too much emphasis on order and coherence.
Working in Kenya, Mulemi notes that the lack of cancer screening in lower-income settings results in the presentation of late-stage disease. Therefore patients are rarely given prospects of recovery. In these scenarios, he argues, cancer and its treatments exist as part of a continuation of the struggles of daily life rather than being the significant interruption to life that it is often seen to be in the Global North. Furthermore, “survivorship,” a cornerstone of much Western cancer narrative, is an absent category here, as the late stage of diagnosis renders the possibility of recovery remote. The research in Kenya (Mulemi 2015), Botswana (Livingston 2012), and Argentina (Luxardo 2015) shows these narratives ending with the death of the patient at home rather than in hospices or hospitals common in resource-rich countries such as the United Kingdom or the United States. Yet everywhere, anthropological studies reveal that cancer narratives defy the common chronicles of survivorship: they are far less stable, coherent, and optimistic.
Care and Technology
Upon diagnosis with cancer, patients are drawn into an immense web of care and technology and become the focus of medical oncologists, surgeons, technicians, and their battery of diagnostic and treatment machinery. The affective aspects of this “biotechnical embrace” (DelVecchio-Good 2001, 396)—the potential for the alleviation of suffering as well as the pure excitement of new technological discovery—animate what DelVecchio-Good calls the “medical imaginary.” Referring particularly to the United States, this concept ties biomedical advances to the prospect of longer life, thus describing how hope (and expectation) give particular cultural power to the advance and implementation of technologies and philanthropic impetus to their financial backers (DelVecchio-Good et al. 1990).
While the embrace of technological biomedicine can furnish a patient with hope, the price tag often accompanying medical interventions in cancer care can be overwhelming—particularly in for-profit medical systems such as in the United States. Noting that roughly 60 percent of personal bankruptcies in the United States are attributed to the financial demands of illness, Jain (2013) writes of her own experience: “I felt trapped inside a snow globe with endlessly generated medical bills spilling down around me, creating ghastly drifts of white envelopes” (11). Statistics and stories such as these sit uneasily alongside the vast profits made within the cancer healthcare industry, generated by the use of technologies such as patented pharmaceuticals and the sparse production of generics.
Financial implications aside, the advance of technology in cancer care (and hospital medicine more broadly) has not been met without scrutiny, despite the obvious benefits of medical technology for extending life. One example pertains to the use of imaging (produced by X-rays, CT scanning, MRI machines, and echocardiography), which has been argued to overshadow the patient as the actual site of disease, rendering the lived experience secondary to the visualized biomedical “reality” (Blaxter 2009; Frank 1995; Mol 2002). Concerns such as these echo discussions common to the study of biomedical science regarding the true location of disease. Canguilhem, writing in 1943, voiced the same general opposition to the disembodiment of pathology:
depending on the degree of subtlety in the analysis, disease will be placed at the organ level . . . at the tissue level . . . at the cellular level. . . . But in doing this we forget that historically, logically and histologically we reached the cell by moving backward, starting from the total organism.(Canguilhem 1989, 223)
Taking cancer as existing in the individual rather than within a tissue, consider what the conflicting effect of this localizing medical technology may be for the lived experience of cancer. Blaxter (2009) turned to this question when writing about her own experience of lung cancer diagnosis and treatment in the United Kingdom. She suggests that it is not the merely visual representations of her disease (the CT scans, X-rays, etc.) that constitute “images” in modern medicine, but also the measures, detailed notes, and distilled reports that constitute partial depictions of her body. In her analysis, it is not these medical technologies themselves that are the source of patient disembodiment and alienation; rather, it is the primacy they are given in the determination of treatment that gives them this quality. Clinical decisions, she argues, were made “with only lip‐service paid to the principles of patient‐centeredness or the inclusion of the patient as a partner” (Blaxter 2009, 762). With the removal of the diseased tissue from the patient, the individual fades into the background, to become represented instead by abstract “data points” (Jain 2013) in both clinical notions of the disease and in decision-making regarding future treatment options. As Farman (2017) tells us, however, there are limits to this biotechnical world. If a terminal diagnosis has been made and further implementation of biomedical technology deemed futile, the terminal body falls beyond its reach. Of such diagnoses, he argues, it is “not the fact or experience of disease, pain, and so on, as much as the experience of a body from which all promise, all hope, all potential has been withdrawn” that marks the terminality of the terminal body (Farman 2017, 101).
Anthropologists are concerned not only with the alienating effect of technology commonly discussed in the West (Blaxter 2009; Jain 2013; Mol 2002), but also with the ways in which technologies such as vaccination, genetic testing, or screening travel (Gibbon 2015; Towghi, 2013) and how they change over time (Burke 2014). Of particular concern here is their implementation as part of global health initiatives in regions where public healthcare may be scarce and investments in basic care are needed far more than expensive technical solutions to very specific problems.
Gibbon (2015) writes of Western researchers carrying out genetic testing to understand the influence of genetic predispositions on the rates of breast cancer in southern Brazil. Due to the inequalities present in the Brazilian healthcare system, she argues, many of those recruited for the studies viewed their participation in genetic testing as a means to receive diagnostic care that they would otherwise be unable to access. As with the outsourcing of clinical trials from Western countries to “treatment naïve” populations, anthropologists have been quick to point out that in these scenarios, the dividing lines between research and the provision of care rapidly blur (Petryna 2009). Anthropologists have also taken note of “offshore” studies in relation to other modes of screening. Burke (2014) describes how the guidelines in the United States for the prevention of breast cancer moved from “breast self- exam” (BSE) to “breast awareness,” based on the results of a randomized controlled trial conducted in Shanghai. Invoking Lock’s (2001) “local biologies,” the notion that the subjectively experienced body is a coproduction of biology, culture, and environment, and so differs between different contexts, Burke critiques this study, suggesting that local ecologies of screening—by which she means that the exam itself would be carried out differently in the United States, where it was deemed essential to women’s health as compared to Shanghai, where it has no prior association with health or a history of empowerment and activism (the reason for going to Shanghai in the first place, a screening-naïve population)—would strip the results of their value when interpreted and implemented in the United States.
In an article on HPV vaccination in India, Towghi (2013) too remarks that drives to increase access to preventative technologies, such as vaccines, can be misguided. She examines “demonstration projects” conducted in 2009 in which thirty thousand girls in two Indian states were vaccinated, several subsequently dying. Not only was one of the most common strains of the HPV virus not protected against by the vaccine (which was developed outside of India), but should the vaccine have been rolled out across the country, the cost could have bankrupted the public health system “even if subsidized by the state and made part of the institutionalized therapy” (Towghi 2013, 338). This is an example of poorly aligned priorities, she argues, when therapies such as vaccines do not even cater to the more pressing needs of women in this area, such as screening through pap smears.
Cancer Care in the Global South
In the settings of the Global South, the narratives around cancer are different from the Global North (Mulemi 2015). If both the metrics that claim knowledge of cancer in these regions (Adams 2016) and the attempted interventions (Gibbon 2015; Towghi 2013) can also be divorced from grounded realities, then what can anthropology tell us of cancer and cancer care in the Global South?
This is a key role of the discipline in studies of cancer. Often, cancer has been thought of as largely a disease of Western “developed” countries, in part a product of longer lifespans brought about through advanced healthcare systems and effective infectious disease control. Many have challenged this assumption, writing not only of the presence of cancer and noncommunicable diseases in the Global South but also critically interrogating the ways in which these diseases are problematized and brought to international attention—often as the result of discreet organizational pressure, both pharmaceutical and philanthropic (Reubi 2012; Reubi et al. 2016). Despite this scholarship, however, the lack of infrastructure to diagnose, treat, and record the incidences of cancer in poorer settings, alongside a public health and humanitarian focus on infectious diseases, has led some anthropologists to suggest that cancer has, in effect, been rendered “invisible” in these locations (McMullin 2016). This absence in the broader literature is a problem that anthropologists in the early 21st century have recognized, their work turning toward the problematic realities of cancer care in low-income settings (Livingston 2012; Macdonald 2016; Mika 2016; Mulemi 2010, 2015). At the same time, anthropologists have asked the question of whose interests are being served by making cancer in the Global South visible today (Caduff and Van Hollen 2019).
Julie Livingston provides a careful account in her book, Improvising Medicine: An African Oncology Ward in an Emerging Cancer Epidemic (2012), in which she relates ethnographic research carried out in Botswana. Livingston examines the different ways in which oncology is practiced, in part determined by the availability of both biomedical equipment and information. In low-income settings, Livingston displays how diagnosis and treatment are achieved through a variety of “improvised” techniques. Biomedicine, she concludes, “is a global system of knowledge and practice, but it is also a highly contextualized pursuit. Everywhere, doctors, patients, nurses, and relatives tailor biomedical knowledge and practices to suit their specific situation” (6). The lived experience of cancer is therefore determined as much on the plane of social and economic life as on that of cellular biology (Caduff et al. 2018).
The intertwining relationships between the experience of the disease and the capacity for creative improvisation among those working in cancer care in low-income settings is a recurring theme within the literature (Livingston 2012; Macdonald, 2016; Mika 2016). This is particularly the case in countries suffering frequent political instability such as Uganda. Here, the capability of healthcare professionals to deliver any kind of oncological care is tied to fluctuating national stability (Mika 2016). While civil disruption and national indebtedness impinge on the standard delivery of healthcare, the regimes of creative “experimental” care established during periods of flux may outlast the precarious situations that demanded their creation and mold local oncology practice and general care. As Marissa Mika (2016) puts it, “experiments create infrastructures.”
Careful ethnographic fieldwork within these infrastructures has revealed that they are populated not only by those professionally engaged in the treatment of cancer. In lower resource health systems, it is often the family of cancer patients who provides the majority of care (Luxardo 2015; Mulemi 2015). As Mulemi (2015) explains of Kenya, due to the small number of trained medical professionals, it is family members who often assist in the negotiation of referral networks and the provision of care once hospital admission is secured. Further, as the diagnosis of cancer is often made at a very late stage, patients are frequently returned home as little can be done for them in terms of curative treatment. At this point, he argues, total responsibility for care is returned to the family. The disease can be “extremely unpleasant” (Mulemi 2015) for those involved, as legal restrictions and shortages of resources limit the use of opioid analgesics to ease the pain of late-stage disease. This, he says, is similar to the situation Livingston (2012) describes in Botswana, where pain is a frequently cited concern but, in part through administrative reluctance and a lack of patient expectation, pharmaceutical palliation is rarely forthcoming. In contrast to Botswana where a commitment to equal distribution of healthcare resources is present, access to pain relief in Kenya can be shaped by financial power, as “those who can afford pain management have a greater chance of obtaining it either through private care [or] on the black market” (Mulemi 2015, 172). Caring for family members during the late stages of the disease can thus be deeply difficult, and unsurprisingly the roles are not always taken willingly. Luxardo (2015), through her work with family caregivers in Argentina, shows that family members can be reluctant to assume responsibility for their relatives, as they (largely women—wives, daughters, mothers) bear a great deal of anxiety and stress as the illness progresses. Through her work, Luxardo argues that the state should support these people who are, in effect, unpaid laborers.
It is not the case however, that families are always required to provide care. Macdonald’s (2016) research conducted in Mumbai saw her working with the volunteers, often previous cancer patients, who provided care to newly diagnosed patients. These people were aware of the conditional ideas about cancer held by different groups and the divergent experiences, knowledge, and expectations that informed them (which ultimately contributed to the sometimes fraught relationships between biomedical professionals and patients). The work done by these volunteers (e.g., translating prescriptions into local languages) goes some way to bridging this divide. This work reveals once again the ways socioeconomic realities dictate the emergence of care and the experience of cancer in particular locations.
These examples underline the contingent nature of knowledge and expectation surrounding cancer and its treatments. The clashing of ideas within the process of diagnosis and subsequent clinical care serves to elevate potential discordance between patient and practitioner. Mulemi (2010) explains the frequent presentation of late-stage disease by describing the lack of readily available healthcare and screening options in Kenya and the low socioeconomic status of potential patients. Yet “a majority of the patients knew little about the reality of their kinds of cancer, and anticipated full recovery and restoration to health” (198). Mulemi outlines the strategies used by physicians and other healthcare workers as they come into contact with these dissonant expectations: “physicians and other hospital staff tended to conceal the reality of the disease and the possible outcome of hospital treatment from the patients” (198). Even in situations as outwardly desperate as these, the discourse of hope has been shown to emerge, allowing the practitioners and patients to negotiate these fraught encounters.
In the Global North, oncology and associated cancer care is generally delivered by a healthcare professional to a patient, from experts to laymen. As we have seen, however, this orientation of expertise does not always hold in disparate locations around the globe. Dwaipayan Banerjee (in Caduff et al. 2018), writing on the provision of oncology and palliative care in India, noted the different approaches in Delhi and Kerala. In the former, poor urban patients are attended by teams of professional healthcare workers delivering standardized, expert services (a “top-down” technological solution). In Kerala, however, something of the reverse has been implemented. Volunteers from within the community are trained, enabling and empowering them to provide care to their own family and neighbors. This raises questions about effective pathways of care and the importance of understanding existing care networks in order to find innovative ways in which they can be adapted and utilized efficiently. This example also serves to displace the notion that interventions can (and should) be easily exported from one location to another, with the expectation that they function in roughly the same way. Social worlds, as Banerjee states, are “both sources of stigma, violence, abuse and neglect as well as of potential help and support” (Caduff et al. 2018, 6; Banerjee 2019a, 2019b). These ethnographic insights allow an understanding of cancer care around the globe as dynamic and fluctuating, moving beyond a conception of a one-way monologue of expert to patient. Further, Van Hollen’s work has shown that the Global South should be seen not solely as a place in need of technological advice from the North, but as a place in which new, innovative forms of care can emerge (Van Hollen 2018).
Globalizing Cancer Discourse
The anthropology of cancer takes an ethnographic approach to the study of disease as a lived experience shaped by multiple forces. It investigates the regimes of risk and statistical analysis associated with the disease (Adams 2016; Gifford 1986), the methods of screening that aim to prevent it (Burke 2014), and the different ways in which these and other technologies fit into—or push uneasily against—the local words in which they are implemented (Banerjee 2019a, 2019b; Van Hollen 2018). It aims to look beyond the problem as simply one of biology, instead investigating cancer as “something that happens between people” (Livingston 2012), or as Jain (2013) puts it, as a “total social fact” pervading multiple dimensions of social, political, and economic life. This avenue of study displaces the notion that cancers are all the same, and further, that they are the same in diverse locations. Cancer in high-income countries can, depending on ease of access, availability, personal wealth, or healthcare coverage, be met with a vast array of biomedical technologies—what DelVecchio-Good (2001) terms the “biotechnical embrace”—which can inspire immense hope while simultaneously leading to an alienating experience for the patient (Blaxter 2009; Jain 2013). Cancer in the Global South, by contrast, is often—but not always and not for all people—experienced within fragile infrastructures of care (Skelton et al. 2017), and care is shaped by periods of instability (Banerjee 2019a, 2019b; Mika 2016; Van Hollen 2018) and often “improvised” (Livingston 2012) as a result of inconsistent access to modern biomedical technologies and protocols.
Yet there are also striking similarities in the experience of cancer across divides. Cancer disrupts narratives within Western capitalist economies in which expectations of “normal” lifespan dictate patterns of accumulation and reward, and within low-income settings in which poor people must travel far in order to reach treatment, while the rich escape to the best and most advanced hospitals within the country or abroad. Cancer also has power to formulate and reformulate social relations, be they immediate family implicated in the logistics of care (Banerjee 2019a, 2019b; Bright 2015; Van Hollen 2018) or broader social assemblages such as gender (Aureliano 2015; Jain 2013; Luxardo 2015; Manderson 2010, 2011). Discussion of genetic risk can call into question the very notions of relatedness, as discussion of risk and genetic heritage can reshape relationships and illuminate new truths (Hallowell 1999).
This field of study has significance and relevance to both anthropology and the study of health and disease. It throws light on the complex interactions and exchanges that take place between patient and practitioner on diagnosis and how these influence wider social and economic arrangements. It highlights stark health inequalities that characterize the contemporary world. It also examines the influence of medical technology on perceptions of health and disease and how these technologies shape the lived experience of illness. Further, charting the trajectories of people as they negotiate a return to some form of health or approach death contributes to an anthropological understanding of life as it is lived. Anthropological studies of cancer display unsettling worlds and incoherent lives into which those caught within cancer’s web are thrust.
Contemporary accounts of cancer often offer not accounts of cancer but of oncology. In so doing, they foreground the journey of Western biomedicine while pushing aside other stories and languages of cancer. Writing of Siddhartha Mukherjee’s popular book, The Emperor of All Maladies, Karakasidou (2015) notes:
Although it tells the story of the professionalization of oncology, it does not show how this process brought about the very Western conceptualization of cancer as an individualized disease with a long evolutionary history based upon the phenomenological, embodied Western notions of warfare. (x).
The anthropology of cancer can destabilize and decenter dominant narratives built on notions of warfare, survival, and individual disease and bring to light diverse narratives, many of which reinsert social, cultural, and political dimensions into contemporary understandings of cancer.
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