The Risky Subject in the Risky Body: On BRCA Mutations and DCIS

Peggy Orenstein’s new article “When Cancer Is Not Cancer” tackles the dicey subject of Ductal Carcinoma In Situ (DCIS).

Orenstein visits UC-San Francisco oncology professor, Dr. Laura Esserman. She describes Esserman’s office as decorated with quotes that amount to “When you challenge people’s deeply held beliefs, well, haters gonna hate.” Considering I recently told Cancer Curmudgeon and Get Up Swinging that we should make t-shirts that say Cancer Haters Gonna HATE, you won’t be surprised to hear that Esserman is a scientist after mine own heart.

At issue here is overdiagnosis, a problem in American medicine in general and in breast cancer oncology in particular. Most people tend to think of cancer as something you either have or you don’t have, when in fact cancer is more like a spectrum. Multiple stages stand between a healthy breast and deadly invasive metastatic cancer, including hyperplasia, hyperplasia with atypia, and DCIS.

DCISrange

Orenstein’s article is worth quoting at length.

“Esserman has focused on ductal carcinoma in situ (DCIS), an overgrowth of cells in the milk ducts. DCIS was rare before universal screening. It now accounts for 30 percent of breast cancers — nearly 65,000 cases a year. With its near 100 percent cure rate, DCIS would seem like a triumph of early detection. Except for this: In 50 to 90 percent of cases (estimates vary widely), it will stay where it is — “in situ” means “in place.” It lacks the capacity to spread, so by definition, it will never become life threatening. Yet because there has been no way to predict which cases might morph into invasive cancer, all are treated as potentially lethal. By 2020, 1 million women will likely be living with a DCIS diagnosis. If, conservatively, half are harmless, that means hundreds of thousands of women will have been overtreated, enduring the physical risks and psychological devastation of any cancer patient.”

Certainly, average women are being overdiagnosed with breast cancer and this is not likely to change any time soon. Quite frankly, the cancer industry makes a lot of money by putting women through needless surgery and treatment. Not coincidentally, women have been trained to remain hyper-vigilant about early detection, despite the fact that early detection doesn’t work. As Orenstein and Esserman discuss, if early detection actually saved lives, then the increasing diagnosis of DCIS (AKA “stage 0 breast cancer”) would dramatically improve survival rates. That hasn’t happened.

Together early detection (the pinkwashed cult of mammography, self breast exams, etc.) and overdiagnosis have dramatically extended the “breast cancer continuum” that Maren Klawiter discusses in The Biopolitics of Breast Cancer:

“The movement of the mammographic gaze into asymptomatic populations transformed a relatively clear either-or distinction into a more fluid, fuzzily bounded, and ambiguous breast cancer continuum. Instead of the temporary, either-or sick role of the earlier regime, the regime of biomedicalization created the ‘risk role’ for its new subjects–a role that required that the regime’s risky subjects take up permanent residence along the breast cancer continuum” (86).

I named my blog the risky body long before I read Klawiter’s book, because I wanted to highlight the way that genetic testing turns subjects into objects–in other words, how deleterious BRCA+ results turn women into mere bodies defined by incalculable risk. Thus the headless woman in my blog header. So you can imagine how excited I was when I read Klawiter’s chapter about “risky subjects.” She describes how the medical industry has radically expanded the breast cancer community to include asymptomatic women through proliferating screening methods and pinkwashed discourses, thereby “reconstitut[ing] adult women as risky subjects” (85). My excitement about Klawiter’s work can most accurately be rendered thusly:  !!!! OMG YES ^THIS !!!!

It’s clear that overdiagnosis is a massive problem fueled by capitalist interests invested in a cancer industry that turns nearly all adult women into risky subjects in need of constant cancer screening and/or treatment, regardless of whether or not such actions actually improve women’s health and wellbeing. We need more critiques like Klawiter’s, Samantha King’s, and Gayle Sulik’s to help average women understand–and hopefully resist–the medical ideologies they are being subjected to.

But what does all overdiagnosis mean for BRCA+ and other HBOC women?

Obviously, the discovery of BRCA1 radically expanded the breast cancer continuum in the early 1990s, and, in some ways, HBOC women became the ultimate risky subjects. If DCIS is an un-cancer, then so are BRCA mutations. By this I mean that neither DCIS nor BRCA mutations are cancer until suddenly some day for some women (who we can’t single out in advance) they do in fact become cancer.

How many women are subjected to antiquated, ineffectual, expensive, time-consuming, and stressful screening methods to find those women who will actually develop breast cancer? Sure, we know BRCA+ women are far more likely than an average woman to develop cancer. However, screening alone isn’t prevention. It does save some lives, but not nearly as many as you’d hope it would. Is it any wonder so many BRCA+ women drop surveillance entirely after a few years?

It’s a frustrating situation if you’re like me: a BRCA+ feminist who wants to resist pinkwashed capitalist medical ideologies (if that’s you, then CALL ME MAYBE (or maybe just tweet me @theriskybody maybe because calling would be rather creepy)). I don’t want to be a dupe of pinkwashers and the cancer industry. I want solid scientifically proven methods for preventing, detecting, and treating breast and ovarian cancer. There ought to be a better way of handling things, but right now there isn’t.

While I know screening methods for breast and ovarian cancer are woefully ineffective for both average and HBOC women, I still feel viscerally compelled to be a “responsible patient” by submitting to rigorous screening several times a year. I struggle against being a risky subject in a risky body, however subjectively and genetically inevitable that may be. Honestly, BRCA+ ideological and practical clusterfucks like this made prophylactic mastectomy a no brainer for me.

[P.S. An incomplete draft of this post was accidentally published last week, and when I took it down I lost the great comment someone had posted–sorry about that!]

BRCA+ Epistemology and Masha Gessen’s Blood Matters

I picked up Masha Gessen’s Blood Matters after reading a glowing review of it in the NYT. It’s a nonfictional exploration of the cultural politics of genetics that begins with her mother’s death from breast cancer and her own deleterious BRCA1 test results. Along the way, she discusses subjects as varied as what makes a person decide to undergo genetic testing and the treatments available for people with extremely rare inherited mutations. She interviews scientists, doctors, family members, advocates, patients, and many others from Russia, the United States, Canada, and Israel. Wide-ranging, elegantly written, analytically astute: this is the BRCA+ book I’ve been hungry for. I devoured it in just a day. Go read it. Go read it now.

Much of the book involves Gessen’s search for answers to the thorny ethical, practical, and cultural questions that genetic mutations give rise to, so that she can make informed decisions about what to do with her new-found knowledge of her BRCA+ status. Like Joanna Rudnick, Gessen starts off not wanting the preventative surgeries that her doctors and seemingly everyone else recommends, but she ultimately ends up having prophylactic bilateral mastectomies with DIEP FLAP reconstruction. She has also documented her decision-making process in a series of articles for slate.com, pieces of which are included in this book.

Although most of the book in written in a journalistic mode with Gessen observing and recounting scenes in laboratories or clinics, some of the moments that I liked most were when she zooms in on her own personal experience. She talks about the loneliness of being BRCA+ and her envy for those with support communities to help them get through it, like a group of cousins who are all “in it together.” She discusses her hesitancy to dive into the online BRCA+ community, which she seems to find surreal. She mentions that she got tested for her mother’s mutation because she was confident that she’d test negative. She describes the inadequacy of gene therapy and overly chipper counselors who cock their heads in perpetual sympathy as they carefully phrase medical protocol. She becomes too anxious to do self-exams, because she fears her body’s capacity to develop cancers. She traces the mutation as far back through her family tree as she can by piecing together family lore. I had to resist the urge to write “me too!” repeatedly in the margins.

Most important, she briefly discusses the shift in identity and world view that a BRCA+ diagnosis brings:

“I belong to a generation that grew up believing we were shaped by love, care, or lack of it–or perhaps even the number of books on our parents’ bookshelves. But we will go to our graves believing that it is a combination of letters in our genetic code that determines how we get there, and when. Our concept of the stuff we are made of will have undergone fundamental changes” (14).

YES. THIS A THOUSAND TIMES. Testing BRCA+ changed my life utterly and irrevocably. One day, I was a normal healthy person. The next, I transformed into a pathologized being who grapples with obscure family histories, an army of doctors of varying skill and humanity, a capricious insurance industry, fear of cancer and surgery, social stigma, and the weight of irreversible medical decisions. But the changes wrought by knowledge of being BRCA+ go far deeper than that. The way I think of myself, my body, my family, my life, and existence in general has shifted dramatically.

After discovering my BRCA+ status, I went through not only an existential crisis, but also profound epistemological and ontological shifts. I had a narrative in my head about my life and my place in the world that must be rewritten to accommodate the fact that the threat of cancer has been lurking within me since the moment of conception. It seems as though I never stood a chance, like something out of a futuristic naturalist novel.

Since I got my test results and entered what Gessen calls “the cancer caste,” I’ve said the words “biology is destiny” and “I am not the universal subject” many times half-jokingly. I now see the world through BRCA+ lenses and I inhabit it within a deviantly BRCA+ body. I reject the genetic testing cliche that “knowledge is power,” because although I have always been BRCA+, my discovery that I am BRCA+ has been epistemologically ravaging and subjectively devastating. It has changed me in ways that I did not want to change.

However much cold comfort it may be, Gessen’s book suggests that BRCA+ women are the vanguard patients of the medical industry. We struggle with knowledge and choices that future generations may take for granted as so-called “personalized medicine” will likely require routine testing for genetic anomalies as part of basic care. Every human being has genetic mutations. If knowledge of mutations for hereditary diseases (or, as Gessen discusses, hereditary behaviors like alcoholism and aggression) becomes widespread, then everyone will become a mutant and being a carrier–of BCRA1/2, but also illnesses like Alzheimer’s, Parkinson’s, Lynch syndrome, etc.–will lose its stigma and hopefully its shattering effects.