Malignant: How Cancer Becomes Us

by S. Lochlann Jain

Nearly half of all Americans will be diagnosed with an invasive cancer―an all-too ordinary aspect of daily life. Through a powerful combination of cultural analysis and memoir, this stunningly original book explores why cancer remains so confounding, despite the billions of dollars spent in the search for a cure. Amidst furious debates over its causes and treatments, scientists generate reams of data―information that ultimately obscures as much as it clarifies. Award-winning anthropologist S. Lochlann Jain deftly unscrambles the high stakes of the resulting confusion. Expertly reading across a range of material that includes history, oncology, law, economics, and literature, Jain explains how a national culture that simultaneously aims to deny, profit from, and cure cancer entraps us in a state of paradox―one that makes the world of cancer virtually impossible to navigate for doctors, patients, caretakers, and policy makers alike. This chronicle, burning with urgency and substance leavened with brio and wit, offers a lucid guide to understanding and navigating the quicksand of uncertainty at the heart of cancer. Malignant vitally shifts the terms of an epic battle we have been losing for decades: the war on cancer.

Genres: Nonfiction, Anthropology, Science, Ethnography, Academic, Illness, Health

300 pages, Paperback

First published January 1, 2013

Reviews

[K. Lincoln · Rating 5 out of 5]

I'm a one year, post-treatment (surgery, chemo, radiation) woman "living in prognosis" with the specter of breast cancer.

This is a must-read for anyone diagnosed with breast cancer. Although, I can't decide if I would recommend it before you go through the whole treatment-decision making process or after. After reading it, I felt empowered, angry, sad, betrayed, and scared that this is only one of two books I've come across so far (the other one being The Truth in Small Doses) that calls out on the carpet the way cancer research, pink fund-raising, and the "brave survivor" box breast-cancer patients are forced into are complicated, messy, frustrating things.

So yeah, reading it beforehand might give you the gumption to call into question doctor's opinions on chemotherapy or a too-short breast exam, or feel unwilling to demand test results right away because you're a "good" patient, but it also might leave you feeling depressingly frustrated with the complicated truth behind diagnosis, questions of prognosis and life expectancy, and options for treatment.

But this book is also a must-read because Jain is an anthropologist, and her perspective on the cancer industry in this book comes from some unexpected directions-- stances I had never considered or come across in other books: that of a misdiagnosed, potential malpractice suit plaintiff, queer, and politics of fertility (In Vitro) etc. And the prose is eloquent and dense.

Jain starts by acknowledging the shifting, complicated meanings inherent in the word "cancer" itself. Something I began to realize half-way through my own process. "Cancer" can be a death sentence when you first hear it from the nervous physician telling you the biopsy results, then it becomes a specific-sized tumor after surgery, and then something to be eradicated by various treatments, during treatment an identity you either show the world or try to hide, and then finally post-treatment, a constantly hovering presence. Jain writes of her doctor's office

"Cancer in all its nounishness, refers to everything...and nothing. Cancer pervaded the office, residing in each of these objects and people and the relations among them, but nowhere could it be specified as a thing. The main tumors were gone: cancer had only just begun."

Jain's identity leads her to delve into various and often-overlooked or over-simplified aspects of the cancer beast. Having undergone fertility treatments in order to be an egg donor, being misdiagnosed with breast cancer, and then undergoing treatment as a self-identified butch queer in a cancer culture that emphasizes makeup, wigs, and protheses, Jain calls into question the medical industry's screening practices, failure to divulge or acknowledge links between fertility treatments and environmental toxins to cancer, the "brave face" breast cancer patients are expected to put on, as well as the way tort law and malpractice law interacts with diagnoses of cancer.

Political? Yes. Well-written social science? Yes. Challenging and emotionally draining to read? Very much yes. Because after this, you can't keep the illusion of the "doctor mommy" who knows best. You will have to educate yourself and be your own advocate both as a patient and as someone living in the wider world with friends and family who are exposed to carcinogens.

We don't know why some cancer spreads. We don't know why some cancer is indolent for years and then becomes aggressive, nor do we know how much radiation exposure or environmental toxin or genetic susceptibility tips one over the edge into cancer-world.

And that makes me frustrated after all the fund-raising and "buying" pink that we as Americans do. Books like this help us focus on the real areas: improving doctor-patient relationships, insurance, screening practices, and research into causation.

[Jennifer · Rating 3 out of 5]

Wildly inconsistent. When it was good, it was fantastic: an attack on cancer culture and the cancer industrial complex in the US (and, frequently, the western world as a whole). Profoundly personal, thankfully, with no claim to a fundamentally impossible standard of objectivity non-fiction often asserts. Sadly, I felt that this text was in need of an better editor. Jain sometimes overwrites, rendering her points inaccessible through the layers of prose. An entire chapter is dedicated to the in-depth critique of an academic article that many readers won't have access to; this chapter in particular drags and feels bizarrely misplaced amongst the other sections. Formal critiques have their place in the academic world, but probably not in this book given the rest of its content.

Lastly, although I appreciate that the author did not intend to make this a memoir, her use of personal anecdotes is patchy and irregular: we're told many times that her cancer was misdiagnosed for three years, but that's more or less the end of the story. Jain does go on to divulge that her fears were belittled and invalidated, which is absolutely an important and necessary point, but it doesn't equal proof of medical malpractice. Nor does her assertion that the doctor's use of fine needle aspiration (which actually is a form of biopsy, despite the author's claim that it is not) was professionally negligent. Usage of this test is widespread and clinically appropriate given its low chance of complications. Can it miss cancerous cells? Yes, but sadly, we don't have access to tests that can determine malignancies with a 100% success rate that are entirely infallible and impervious to human incompetence. That doesn't make it medical malpractice. We're told that Jain tried to sue, though we hear nothing about this except for her lawyer's habit of engaging in socially inappropriate conversations about sex. Nonetheless, an entire chapter is dedicated to the unfair burden of proof placed on the plaintiff in medical malpractice suits within the civil justice system (I presume, then, that Jain was unsuccessful). I very much concur with her points here, but I can't help but feel that it was motivated by her experiences within the system. I am wholeheartedly in favor of this, but if you're going to utilize your lived experiences, be willing to take the step of actually sharing them with your readers. For Jain to withhold arbitrarily here once she had pulled the trigger felt incongruous.

The sociological critique is marvelous. The rest could have used some work.

[becca barry · Rating 4 out of 5]

I think that this book was an exceptional exploration of the ‘culture’ of cancer. The author explored a macro perspective of the US and the monitoring and governance of cancer through statistics and population data, as well as the regulation of toxicity and toxic products. She also delved into the personal perspective of having cancer; living with cancer. She brilliantly combined discussions of personal identity and ‘passing’ as normal when having cancer, through wigs and an exploration of the beauty industry including its role in constituting the ‘normal’ self. I think some of the main takeaways from this incredible reflection was our responsibility in changing the society that cancer inhabits - better regulating environments and policy, and better caring for people, so that we can minimise as much as possible what this illness has the capacity to steal from individuals and society as a whole.

[Zoe · Rating 4 out of 5]

Intellectual and emotional, expansive yet concise, this book is an excellent examination of all aspects of cancer. The author draws from personal experience as a young queer woman with breast cancer, as well as professional experience as an anthropologist.

[Nancy · Rating 3 out of 5]

I picked up this book expecting something else. I think I was a bit dyslexic reading the title. I envisioned a scientific book about how parts of us become cancer. There are some sections that discuss cancer causes, but it isn't the main topic.

This is mostly a memoir of the author's experience as a butch lesbian academic diagnosed with breast cancer in her 30's. Gender politics obviously pop up as this is Ms. Jain's world, but some references seemed a bit of a stretch. She reports news media "often describing" antinuclear activists as communists and hippies and lesbians. Communists and hippies yes, but lesbians? Maybe I'm just not picking up the clues in the media. It is also a bit of a rant against the whole cancer establishment including random controlled trials.

She does make some good points, most of which have been made elsewhere. Too much time, energy and money is spent inspiring patients to have better attitudes and on finding more toxic treatments that extend life a few months. Too little is spent on discovering what chemicals might be causing increases in cancer. Lance Armstrong's "Live Strong" and the "Think Pink" campaign come in for criticism as distracting focus from actions that might really make a difference.

I am sure there are demographics who will find this book zeros in on cancer topics in a way that really speaks to them, but I am not in that demographic.

[Antonella Justicia · Rating 4 out of 5]

“Anything but an objective thing, cancer can be better understood as a set of relationships—economic, sentimental, medical, personal, ethical, institutional, statistical.”

“The unique way in which cancer presents, decades after exposures, makes it central to the growth of both the industries and the illness, in short, to the existence of the United States as we know it.”

“Just as the demon of communism justified the proliferation of a lucrative nuclear industry, so cancer fills the core of so many economies that if a cure were to be found, the economy might just crash.”

“These phenomena are at once legal, economic, religious, aesthetic, morphological and so on. [Cancers] are legal in that they concern individual and collective rights, organized and diffuse morality; they may be entirely obligatory, or subject simply to praise or disapproval. [Cancers] are at once political and domestic, being of interest both to classes and to clans and families. They are religious; they concern true religion, animism, magic and diffuse religious mentality. [Cancers] are economic, for the notions of value, utility, interest, luxury, wealth, acquisition, accumulation, consumption and liberal and sumptuous expenditure are all present.”

“Not only does it work through the metaphors of metastasis, recurrence, and remission, but it is also at one moment a paper trail and at another an identity, at one place a statistic and at another a bankruptcy; here, a scientific quandary, there, a transcendent image of a cell. One person’s losses offer another a chance to leave a mark on humanity. A body image taken offers another to be found. The project of making cancer—as plural as it is singular, as vast as it is microscopic, as diffuse and discrepant as it is descriptive—resonates under one word. The simple noun cancer consolidates this collective achievement.”

“Does the senior’s discount reward a long life, or proximity to death?”

“Yet justifying one’s own life in the numeric death of the collective makes a dangerous bedrock for hope. Fickle adulterers, numbers make love with the generations who move through them. These data have no allegiance.”

“one can consider oneself the lucky one, not having to survive the deaths of those one loves.”

“Cancer itself parodies the capitalist ideal of accrual through time, and people with cancer inhabit its double consciousness. In the cancer complex, the relations among cell division, financial accumulation, and deferred gratification are anything but linear.”

“Lifespan becomes a financial and moral calling, one that the state will partially subsidize in disability and death for all citizens who fulfill its principles of economic and sexual responsibility.”

“In making cancer survivors into warriors, Lorde strategically transforms cancer into an event, taking it from the banal, everyday slow death into the language of crisis.”

“These scars display the trace of illness as a memorial of death.”

“One thing is clear: as states continue to erode medical malpractice laws by placing caps on damages and shortening statutes of limitations, while continuing to leave responsibility for improving systems to hospitals themselves, we have fewer and fewer ways to make such often unknown medical mistakes visible as larger political issues.”

“the system still operates on the notion that the immortal logic of science trumps individual mortality.”

“It doesn’t take long probing cancer’s underbelly to note the metastasis of some diseased social assumptions.”

“A population feeding on carcinogens will suffer an effect, even if research doesn’t track it. Echoing the problem with IVF statistics, or the lack thereof: no data does not equal no effect. This adds a complicating factor, not just in the effort to account for cancer rates, but also in making sense of international comparative studies, even though mainstream oncology literature rarely raises the issue.”

“Each day, we catalogue ourselves by this decision: what to keep, what to throw away. And through that appraisal we maintain our very selves.”

[Paul · Rating 3 out of 5]

This book is all the things other reviewers have praised.... and less. It is well written, thoughtful, provocative.... All of that. What it is not is an anthropological study of cancer in the US.

Just where the author was treated for her illness is unclear. As I read it she was first treated in Canada, attended a retreat near Vancouver, and received follow up treatment at Stanford. She grew up in Canada, and now resides in San Francisco. Her first hand comments thus appear to concern both the US and Canada. Has she, as I would expect of an anthropologist, extended her study to include other regions of the US, Canada, or the world? Maybe, maybe not. Generally I think not.

She does state she has interviewed cancer patients, doctors, scholars, and many others. But do they represent the diversity of the country (whichever country we are looking at)? She seems to have received treatment at a top notch facility. Can we fairly extend her conclusions to cover perhaps city hospitals? Does her critique apply to both Canada (where there is universal public health care) and the US (where health care is more diverse and for some nonexistent)? The author doesn't say.

And is the study up to date? When did she receive care? Not specified.

Given all of the above I conclude the book is not readily categorized as "anthropology/medical anthropology/global health" as the back cover of the book would have it. It is a memoir. As such it is certainly interesting and joins the many other memoirs of cancer survivors. Professor Jain is certainly a knowledgeable observer, and a privileged one. Her view of medical practice is a cynical one. I wonder how many of the survivors of cancer who she interviewed or was in retreat with agree with her views. She doesn't tell us.

Both the author and her mother (an M.D.) have sued doctors from whom they have received treatment. The author tells us her attorney warned her that they might get stuck with court costs and paying the other side's legal fees were they to lose the suit. She tells us she's never heard of such a thing. I've served jury duty in civil court in New York City many times. It is the norm here. Did she not consult with another lawyer? At least in writing this book?

[Lee · Rating 4 out of 5]

Even a partial reading of this is better than no reading - it’s just too important. Although this is not a book I read cover-to-cover, I read its sections out of order to complete an analysis assignment. Here are some of the evidences I referenced that stuck out to me:

“In 1992, the head of the FDA, David Kessler, made a similar distinction when he allowed the use of silicone breast implants for reconstruction following cancer surgery but not for cosmetic uses during a moratorium in which the industry was charged with gathering evidence to prove the safety of the device” (p. 275). You can only place a lump of carcinogen in your chest if you’ve just had cancer. Wonderful!

“If expertise is often based on claims of certainty, it may be easy for treatment to become a sort of proxy for certainty, where doing something is perceived by patients and physicians alike as better than doing nothing” (p. 256). Uncertainty in the medical field is often deliberate, and in fact orchestrated by ego pressures. Awesome!

“Cancer appears only at the nexus of our ways of thinking about it” (p. 22). Cancer cannot be removed from the language of pain, or humans’ instinct to conceive of it as an ideological war to “battle” and conquer.

When my dad died of terminal cancer, he used morphine in the last phase of his life. It was not covered, and cost hundreds of dollars - racked up in just a matter of days, maybe weeks. Even after he denied several harsh treatments in order to live out the rest of his life in more autonomous comfort, cancer enormously profited off him. Jain’s book is the kind that victims of the cancer “culture” system wanted and needed to read.

[Lisa · Rating 3 out of 5]

Something about this book just didn’t click for me. The sources felt too disparate and I wish it had been more circumscribed.

[Carolyn · Rating 4 out of 5]

As anthropologist, Jain exemplifies a multidisciplinary and wholistic approach to the documentation of cancer and its societal implications. Participant-observer throughout the course of her own cancer diagnosis and treatment, the author explores cancer from both personal and objective perspectives. Jain's ability to fuse the statistical and legal perspectives on the disease with the implications of cancer for the individual patient themselves should not go unmentioned. This work is a perfect piece of medical anthropology. Additionally, Jain explores the intersectionalities of disease with gender, queerness, and race. While factual (the references section occupies an impressive chunk of the book), Malignant is never clinical in tone. A truly insightful, activist-promoting work that is both eye-opening and fear-inspiring.

[Tanya · Rating 5 out of 5]

Read through the intro so far: vivid, beautiful, moving.

[Lochlann Jain · Rating 5 out of 5]

See mylink text for more information on the book.

[Mills College Library]

362.19699 J256 2013

[Pamela · Rating 3 out of 5]

Personal history intertwined with medical facts and research. Terribly informative from a different perspective

[YL · Rating 5 out of 5]

Not just a good book on cancer, but a great book on how it is to encounter modern American medicine, as someone young and queer.

[Alison Steiner · Rating 3 out of 5]

A challenging and confronting read. Though it raises some very valid points about the 'culture of cancer' I have to admit I felt quite depressed and helpless by the end of it.