U.S. Cancer Culture: A Captive Fear

How fear shapes the experience of cancer and how its unpacking can lead us to a politics of collective action

Bobbie Dousa
January 23, 2020
February 10, 2020

“As far as you can discern,” I asked, “what would you say are patients’ major concerns as they undergo treatment for cancer?” My interlocutor was a recently retired oncologist who had spent the past forty years heading the cancer care unit of a prominent university research hospital in California. He had a tendency to pause before replying to my queries, squinting and tracing his eyes over the heavy wood-panelled walls that kept the pub where we sat cloaked in dusk despite the indolent afternoon sun outside. Abruptly, barreling out in one breath, he answered:

“Patient concerns — talking about cancer — are: I am going to lose control; I am going to have pain; I am going to lose my dignity; I am going to be a burden on my family; and, I am going to die.” Leaning back, he shuffled his crossed arms and assured me, “Those are their concerns, every single one.”

As our conversation continued, he would subsequently elaborate on how these fears were punctured and compounded by sociological and personal factors such as financial costs and insurance issues, racial and ethnic inequities, geographic stratification, age, and one’s co-morbidities. He stressed that how one will encounter treatment (if at all), let alone react to and process their cancer diagnosis, will reflect one’s embodied experience in the world. It is an analysis similar to the one expressed in the opening lines of The Cancer Journals by the celebrated writer and feminist activist, Audre Lorde: “Each woman responds to the crisis that breast cancer brings to her life out of a whole pattern, which is the design of who she is and how her life has been lived

The interviews I have conducted with current and former cancer patients, patient advocates, and medical staff in the U.S. are marked with the agonising depth and range of fears cancer foments. I have heard from patients who struggled with fears of their cancer and treatments’ potentially lasting effects on their cognitive abilities, like a young doctorate student who worried she would fail to regain her short-term memory after a series of aggressive chemotherapy treatments. I have listened as patients told me their fears surrounding permanently losing other forms of bodily autonomy as a result of their cancer — their ability to walk or exert themselves physically, engage in sex, use the toilet, feel attractive, have children. I have heard patients, who previously struggled with depression and anxiety in the aftermath of past traumas like growing up in poverty and sexual assault, explain how the terror of potentially dying of cancer resulted in their development of PTSD. And I have heard patients and patient advocates delineate fears that extend through the body and psyche in other ways: fears of deportation upon seeking medical treatment; fears of what their family will endure when they can no longer provide an income or childcare; fears of social isolation (especially for people from communities which attach a stigma and sense of personal failure to contracting cancer); fears of pain; fears that they will be traumatised once again by medical staff; fears that the cancer will return.

In an excerpt from her new book chronicling her encounter with breast cancer, poet and essayist, Anne Boyer recasts the personal fears and suffering cancer wrought upon her life — while keenly felt — as experienced in intimate commonality. Boyer writes: “I was a single mother who had no savings and no partner to care for me, who had to work all through my treatment at a job where I was advised to never let on that I was ill. In other words, my cancer, like almost anyone else’s, was ordinary, as was, apart from my practice of writing, my life...My cancer was a captive fear that I would die and leave my daughter in a hard world with no resources, a fear, too, that I had devoted my life to writing and sacrificed all I had and never come to its reward. It was a terror that all I’d ever written would sit data-mined but not read in Google’s servers until even Google’s servers were made of dust, and in the meantime I would become that unspeaking thing, a dead person, leaving too soon everyone and everything I loved the most.” Against an assertion of the common as paltry, Boyer grasps this experience with both hands as tortuous banality.

“Fear is a central and understudied aspect of cancer”

Certainly, cancer — and the fear of cancer — is common. In the U.S., one in two women and one in three men will develop cancer in their lifetime. Epidemiologists and other researchers have linked high rates of cancer incidence to exposure to modern toxins as well as to the fact that average life expectancy rates have nearly doubled since the beginning of the twentieth century. While the medical historian Roy Porter asserts that cancer is “the modern disease par excellence,” historian of science, Steven Shapin, asserts that the fear of cancer, furthermore, now sits on an unprecedented throne. Shapin contends:

“The experience of cancer has always been terrible, but, until modern times, its mark on the culture has been light. In the past, fear coagulated around other ways of dying: infectious and epidemic diseases (plague, smallpox, cholera, typhus, typhoid fever); “apoplexies” (what we now call strokes and heart attacks); and, most notably in the nineteenth century, “consumption” (tuberculosis). The agonizing manner of cancer death was dreaded, but that fear was not centrally situated in the public mind — as it now is.”

Perhaps indicative of the centrality of the fear of cancer is the fact that nearly all patients I have spoken with narrate a cardinal loss of sensation in their bodies when initially made thrall to cancer’s “captive fear.” This is their common refrain: “Once the doctor said I had cancer, I didn’t hear anything else.” The anthropologist, Lochlann Jain, notes that oncologists and others in the medical community — such as, the American Cancer Society’s chief medical officer, Len Lichtenfeld — regularly discuss “the valid problem of how (and if) doctors should manage fear in the diagnostic procedure, where the word cancer may prevent a patient from absorbing important information about managing monitoring symptoms.”

Notably, the “management of cancer fear” involves for many patients the compartmentalisation of a shadowy figure, a pandora’s box — the question of how did I get this disease? Patients I have encountered suggest, both explicitly and implicitly, that there remains something unspeakable locked within this question. While some patients twitch or avert their eyes when the possible causes of their cancer arise, others are vocal and resolute in their decision to shirk off this question as necessary pragmatism: “I don’t know what caused it, all I know is that I have it.”

“How one will encounter treatment (if at all), let alone react to and process their cancer diagnosis, will reflect one’s embodied experience in the world”

Astoundingly, the National Cancer Institute claims that two-thirds of cancers are caused by environmental factors. Although many are hopeful that genomics will continue to contribute to our knowledge of why and how people get cancer, as of now, this question of cause persists for most patients. Accordingly, many patients resent that the linkages between the development of cancer and exposure to toxins remain under-explored. Relying on epidemiological studies, Jain highlights how “physicians rarely ask about exposures to carcinogens in patient interviews, even though rates for certain types of cancer can be clearly correlated to occupational exposures.” In reviewing famed oncologist Siddhartha Muhkerjee’s Pulitzer Prize-winning book, The Emperor of All Maladies: A Biography of Cancer, Steven Shapin detects further evidence to implicate how the medical field is often thought to under-treat this issue: “When Mukherjee talks about knowing the ‘causes’ of cancer, he means genes and cellular mechanisms gone wrong, not the environmental agents that might induce changes in those genes. Compare this with the historian Robert Proctor’s “Cancer Wars” (1995), which bluntly states, ‘The causes of cancer are largely known — and have been for quite some time. Cancer is caused by chemicals in the air we breathe, the water we drink, and the food we eat.’ The epidemiologist Devra Davis, in “The Secret History of the War on Cancer” (2007), goes further, alleging that political inaction over environmental carcinogens has its root in the influence of industrial chemical companies — both those that profit by making ‘pesticides and other cancer causing chemicals’ and those that profit by making cancer drugs.” Shapin concludes: “Depending on how you parse the notion of cause, fighting cancer can mean either more genetics or more environmental cleanup, dietary reform, and green politics.”

For most patients, the fear instigated by a lack of clear causation is a potentially debilitating, ineluctable wrenching — to be avoided if nothing else. Anne Boyer’s essay evinces the stabbing poignancy of the stakes that underlay why: “I tell my daughter that my BRCA genetic test came back negative. I tell her that, without a hormonal cause and without a genetic tendency and without obvious life-style factors, the cancer I had probably just came from exposure to radiation or random carcinogens, that she doesn’t have to worry that she is predisposed or genetically cursed. ‘You forget,’ she answers, ‘that I still have the curse of living in the world that made you sick.’ Boyer’s personal account vivifies not only the acute fear instigated by the lack of causation that patients are forced to reckon with, but also the piercing betrayal imbricated in the fact that the linkages between exposures to toxins and cancer often lay fallow in research and under-regulated by policymakers in the U.S.

Meaningfully, Lochlann Jain’s acclaimed auto-ethnography, Malignant: How Cancer Becomes Us, recognises cancer as “not solely a biological phenomenon but also a politics with which to engage and struggle.” Informed by and infused with her own experience with cancer, Jain analyses the “total social fact” of cancer in the contemporary U.S. Malignant traces “how the framings of cancer affect psychic, medical, and institutional experiences,” and how conceptions of cancer “reflect back onto the cultures that have defined it” to reveal their values. Historical inquiry, Jain contends, compels a rejection of the popular framing of science as “a lucid teleology of discovery.” Instead, Jain draws from the fields of law, oncology, history, and economics to relate how science is “a cultural project that takes place within political and ethical infrastructures.” Imperative to Jain’s argument is a central contention that the “twentieth- and twenty-first century definition and management of what we call cancer tracks with the institutions that have come to define America.” The U.S. institutions Jain inculpates include the military, postwar big medicine, technology, and advertising as well as other iconic American industries such as agriculture, oil and gas, cosmetics, plastics, pesticides, tobacco, and construction. Jain asserts, however, that “one of cancer’s biologically defining features — the lag between exposure and symptom — enables us to clearly (and misleadingly) separate it from these industries.”

In a crucial chapter, Jain examines “the broader costs of accepting a general lack of proof, despite serious suspicion, of cancer’s causes.” Jain maintains that fear is a “central and understudied aspect of cancer” and insists that the fear that seems endemic to cancer in the contemporary U.S. interpolates its subjects early. “If you are educated and middle class,” Jain explicates, “you likely eat organic food, wear your sunscreen, and get your colonoscopy.” Participation in the “medicalized and marketized socialization around cancer,” moreover, seems to contribute to an understanding of cancer as a “passively occurring hurdle to be surmounted by resolve rather than the direct effect of a violent environment.” Consequently, Jain holds that the “framing of survivorship as a personal accomplishment further separates cancer causation from its manifestations.”

To investigate the logic by which “Americans realize that carcinogens buttress the American economy” yet “rarely consider the actual people living with and dying from cancer as being a sacrifice to and a structural result of, our use of these toxins,” Jain begins by examining a report from the President’s Cancer Panel. Established in 1971 by the National Cancer Act, this panel, consisting of three experts, devises an annual report to the U.S. president on topics related to cancer. The 2008–2009 report investigates the use of industrial, agricultural, and military carcinogens. This report details the “true burden of environmentally caused cancers” and ends by “most strongly” urging the president to exercise executive power in order to “remove the carcinogens and other toxins from our food, water, and air that needlessly increase health care costs, cripple our nation’s productivity, and devastate American lives.” The report cogently catalogues the U.S. challenges that keep the country’s cancer rates higher than those of other industrialised nations. The report identifies these issues as:

  • Limited and underfunded research on the environmental causes of cancer;
  • A reliance on animal studies (whose subjects, Jains notes, can have higher chemical tolerances);
  • A dearth of data on the effects of low-dose and combination exposures; medical radiation exposures;
  • Ineffective regulations;
  • “Hazardous, unmeasured, and concealed exposures by the military” (e.g., re: weapons testing and development).

Jain gleans two critical points from the President’s Cancer Panel report. The first is that, at this stage, we simply do not understand toxic body burdens. The second is that “U.S. regulatory agencies tacitly permit the use of toxic chemicals if their benefits outweigh the risks they pose.” Through the political might of well-funded lobbyists, industries are able to “keep ingredient lists off product packaging and ensure that manufacturers need not disclose carcinogens in proprietary ingredients.” For example, the report stipulates that “of the eighty thousand chemicals in daily use in the U.S., only a few hundred have been studied for carcinogenicity.” Proven carcinogenic chemicals such as cadmium, phthalates, asbestos, chromium, diesel, fuel, mercury, and formaldehyde remain in common usage in the U.S. and require no federal labels or warnings. To illustrate another example of the U.S.’s unreliable regulatory system Senate Democrats have recently charged the Trump administration’s Environmental Protection Agency officials with favouring the chemicals industry by sidestepping the new authorities granted to them by the Toxic Control and Substance Act of 2016 to regulate toxic chemicals.

In contrast to the standard by which “European governments regulate chemicals based on initial evidence of toxicity, the U.S. government,” Jain explains, “allows chemicals ranked as ‘likely’, ‘potential’, and ‘actual’ carcinogens to be produced and used for many years until adequate proof of danger has been gathered.”

In consequence, Jain next examines the existing frameworks for legal recourse following exposure to carcinogens. For people exposed to these toxins, there are two legal avenues available to them and both persist as fallible in proving injury and its proximate cause — the general foundation on which American law is built. Jain explains that in the first scenario, a plaintiff would need to wait and see if they develop cancer and then subsequently attempt to prove proximate cause in a toxic tort. The necessary delay might mean that the company may no longer exist once the case is brought to court; that the cancer might not be linkable to exposure; and that the patient would need to front the costs of their medical care. In the second scenario, a plaintiff would need to open a case immediately following an exposure and claim that the injury is an emotional one rather than a physical one — that is, the injury here refers to the plaintiff’s fear that they might develop cancer in the future on account of their exposure. “Fear of cancer” lawsuits, as Jain explains through an analysis of the California Supreme Court case Potter v. Firestone Tire and Rubber, are almost impossible to win.

In considering the consequences of these institutional deficiencies, Jain suggests that we in the U.S. have been asked to accept a logic of cancer in which fear plays a key part in its making. Jain reasons that the “most powerful culture-makers — industry, government, medicine — have been slow to recognize, let alone advocate research into, the connection between environmental toxins and the disease. If fear results at least in part from the unknown, then keeping things unknowable contributes to the circulation of an unattributable anxiety.” Jain, not unlike Audre Lorde and Anne Boyer, opposes the popular contemporary logic of cancer survivorship that transforms it from “an emotional and physical state into an ability, a private trait rather than a communal effort and responsibility.”

When speaking with the retired oncologist in California, we indexed the many ways in which the U.S. health care system fails cancer patients. But what we did not discuss that day was how we all — not just policymakers, regulators, and representatives — are deeply responsible for instigating the changes our system of health and health governance desperately requires.

Writing in 1980 after undergoing a mastectomy for breast cancer, Lorde communicated a call for collective action by reasoning that inaction, even if motivated by real fears, offers us no protection: “We can sit in our corners mute forever while our sisters and our selves are wasted, while our children our distorted and destroyed, while our earth is poisoned, we can sit in our safe corners mute as bottles, and we will still be no less afraid.” Lorde conceded: “My visions of a future I can create have been honed by the lessons of my limitations.” Yet, for Lorde, fear was an “appropriate response to a real situation” but one she could “accept and learn to work through.” In defining the critical lesson Lorde drew from her experience with cancer, she wrote: “When I dare to be powerful, to use my strength in the service of my vision, then it becomes less important whether or not I am afraid.” Lorde compelled us to question: “What would happen if an army of one-breasted women descended upon Congress and demanded that the use of carcinogenic, fat-stored hormones in beef be outlawed?”

Rather than circumscribe cancer survivorship to the confines of personal tragedy, Lochlann Jain similarly urges us to commit to serving the trenchant material needs of survivors, those currently living with cancer, and indeed, future patients. This requires, at least in part, that we confront the “failure of the state to regulate carcinogens, to provide healthcare, and to control medical costs.” Jain implicates us all in this effort by advocating for the practice of an elegiac politics in which our conceptions of cancer are grounded, not in comfort or righteous anger, but in mourning — “a space where the material humanity of suffering and death informs communicative and collective action.”

  • Written by Roberta Dousa, Patient Experience Researcher at CCG.ai
  • Edited by Belle Taylor, Strategic Partnerships Manager at CCG.ai
  • Thanks to the patients who have shared their thoughts and experiences on these topics

References consulted:

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