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!]

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4 thoughts on “The Risky Subject in the Risky Body: On BRCA Mutations and DCIS

  1. This is a very bitter and touchy subject for me. I hate the fact that fear-mongering has been used to give a financial boost to the cancer industry, and the way that these un-cancers give a false sense of “winning the war on cancer” security when it is not deserved. Yet, because I view this through the lens of my own experience (as anyone does), I grimace when over-diagnosis is brought up. I feel doubly duped by the industry: I bought into the “get your mammo/early detection/family history” slogans, and now that I’m in Cancerland I’ve learned how misleading those war cries are. Then I was duped again because it didn’t work–I got a false negative, I was under-diagnosed if you will. I was granted a mammo at age 38 because my aunt had just been diagnosed, and my cancer was still missed. Up to the moment I was told I had cancer, I couldn’t believe it–I’d had a mammogram that told me I was fine a month before, after all. Yes maybe women are told to be too vigilant–but clearly, I had reason to be so. So I just have a tough time with all the discussion on over-diagnosis. I know that I have nothing to gripe about–my cancer was found not long after, and I’m still here, complaining. But I guess I worry that some other woman in a podunk town like mine will be told she has nothing to worry about, when maybe she does.
    Esserman is interesting in calling all the over-diagnoses “noise” that distracts from work on the dangerous cancers. I hope that her theory that if the distraction is removed it will translate into solutions for “actual” cancer. But as a curmudgeon–I’ll believe it when I see it, and I hope I live long enough.

    1. Yeah, you’ve hit on a lot of the aspects of mammography, DCIS, and early detection that are so very frustrating and confusing. Also, I don’t know if it’s even possible not to be duped by breast cancer myths to some extent. They’re so pervasive and it takes so much time and energy to find accurate information. Even if you find accurate information, it’s hard to reprogram your thinking when everyone else is waving pink ribbons and talking about the benefits of mammography.

      That said, I think it’s important to differentiate between universal mammography, as it is recommended now, and diagnostic mammography, which is used when a woman suspects something’s wrong. Most women with breast cancer find it themselves, and not through self-breast exams either, but simply through happenstance. Women who find something “off” should, of course, get it checked out by a doctor, who will likely recommend a diagnostic mammogram. But you’re right that there’s grey area between being a dupe of the cancer industry and being a responsible patient who advocates for her own health. It’s really hard to figure that stuff out.

      How did you go from getting an all clear mammogram to a diagnosis a month later? Did you persist after the clear mammogram or did a doctor just find it?

      1. Short answer: nipple inverted. I’ll write it out in a post some day (rather than cluttering your blog with all my confused views on this). I had no symptoms on that first mammo, just being a “good patient” since my aunt had just been diagnosed, and we have family history. When I had that first mammo I was not really looking for cancer-and it wasn’t found even though it was there. I guess that is what makes me nuts: all this talk about how mammos find things that are not worth concern, yet in my case it was the complete opposite. There was certainly a 6cm tumor, yet, no one said cancer. It is not that I don’t think over-diagnosis is an issue needing attention, it just sucks to be on the opposite side of the majority story.

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