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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Followup: prophylactic mastectomy for average women

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I wanted to followup on my previous post about Peggy Orenstein’s article on prophylactic mastectomy for average women with breast cancer because I’m seeing some chat about it in BRCA+ communities that disturbs me.

First of all, some BRCA+ women are getting really defensive about the article, posting things like “PBM saved my life!” or “when I was diagnosed with breast cancer in my right breast, I had a double mastectomy and they found cancer in my left breast too!”

This makes me wonder if these women have actually read Orenstein’s article, which focuses on mastectomies for newly diagnosed women who don’t have a BRCA mutation. There have been many scientific studies about average women without BRCA mutations removing their healthy breast along with their cancerous breast after diagnosis. The scientific evidence shows that bilateral mastectomy does not improve survival rates for breast cancer patients who not have a BRCA mutation–repeat, in patients who do not have a BRCA mutation.

I don’t know why some BRCA+ women are getting so riled up about this. The circumstances of BRCA+ women are quite different from those of BRCA- women, and Orenstein’s argument does not apply to us. She makes it perfectly clear that she’s writing about “CPM” (contra-lateral prophylactic mastectomy for average women), not “PBM” (prophylactic bilateral mastectomy for BRCA+ women).

Secondly, I’ve seen women respond to Orenstein’s article by saying they feel psychologically better having had their healthy breast removed. I’ve written about the psychological reasons for PBM before, and I think psychological well-being is a perfectly valid reason for BRCA+ or BRCA- women alike to choose mastectomy. However, like Orenstein, I’m concerned that average women who are choosing CPM may be doing so without getting all the facts about it.

To me, the problems with CPM are manifold. On the one hand, many women are not familiar with issues surrounding breast cancer treatment and they have to quickly get up to speed right when the clock starts ticking after diagnosis, a moment when they may not be in the best mental state to gain literacy in medical discourses. On the other hand, doctors are not doing a good job of communicating to patients the facts about their risk of recurrence with and without CPM, nor are they doing a good job of communicating options for treatment and reconstruction.

Finally, some women seem angry at Orenstein because they simply don’t want to hear to the facts about CPM.  In Cancer Vixen, Marisa Acocella Marchetto’s friends try to get her to see a top oncologist at Sloan-Kettering, but she keeps avoiding it. Finally, she admits that she doesn’t want to see the specialist because doing so would force her to admit that she has “real” cancer, the kind that requires an expert. In other words, going to a world-class cancer hospital like Sloan-Kettering would force her to acknowledge that her life is in danger.

I wonder if something similar is at play with the backlash against Orenstein’s article. As a lifelong feminist killjoy, I know how pissed off people can get at those of us who speak hard truths. NPR recently ran a segment about a study that showed a surprising number of people don’t even want to know if they have a bad medical condition. This morning I saw one woman declare that Orenstein had a lot of nerve telling her to be well informed when she was such a wreck after her diagnosis, that she had a right to put her head in the sand. How common is this sentiment? Is it the case that some newly diagnosed women don’t want to know all the facts about CPM? Is it mentally easier for some women to just remove both breasts and move on?

The choice to have a unilateral or bilateral mastectomy, whether for prevention or treatment, is highly personal, and I have no interest in telling individual women whether or not they should keep or remove their breasts. But both patients and BRCA+ patients need to make well-informed decisions based on sound medical evidence. For this to happen, the medical industry needs to do a better job of communicating risk and treatment options to women, and women need to be willing to face the facts before choosing whatever option they deem best for their health and well being.

 

Protecting Women’s Agency: on prophylactic surgery for non-BRCA+ patients

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Peggy Orenstein has a really interesting opinion piece in today’s NYT on bilateral mastectomy for non-BRCA+ women, AKA “CPM.” For women without genetic predispositions to breast cancer, bilateral mastectomy does not prevent the recurrence of breast cancer nor does it lead to higher survival rates for patients. Orenstein cautions that women need to pay closer attention to the facts about recurrence and CPM when they’re making treatment choices in the wake of a breast cancer diagnosis. She’s totally right about that.

This is where she loses me, however:

“Treatment decisions are ultimately up to the individual. But physicians can frame options and educate patients in a way that incorporates psychology as well as statistics. Beyond that, doctors are not obliged to provide treatment that is not truly necessary.” (emphasis added)

The medical industry in general and the cancer industry in particular are set up to create passive patients who do as they’re told. This is doubly true for women, whose psychological and physical needs are often downplayed or outright dismissed by paternalistic physicians. Women who have just been diagnosed with breast cancer already feel confused, powerless, and betrayed by their own bodies. Do we really want to add to this psychological morass by encouraging doctors to deny CPMs to women newly diagnosed with breast cancer? I think not.

The situation reminds me of the days before BRCA testing when some women with significant family histories of breast cancer sought out prophylactic mastectomies only to be repeatedly denied the surgery. Even now, I hear stories of BRCA+ women being denied salpingectomies or other procedures by their doctors and insurance companies. It’s hard enough to make the decision to have preventive surgery without also having to deal with (primarily male) surgeons denying you the procedure you’ve chosen.

Now, Orenstein is writing about women who are not BRCA+ and the circumstances for average women with breast cancer are significantly different than the circumstances for BRCA+ women with breast cancer. For instance, CPM has been proven to extend the lives of BRCA+ women (whereas, to be clear, it’s been proven that it does not extend the lives of average women).

Still, we don’t always know if women have or do not have genetic predispositions to breast cancer. Breast cancer genetics go beyond BRCA1 and BRCA2, and women may carry undiscovered or little-studied genes that give them predispositions. I have a friend who tested negative for BRCA mutations, but every single adult woman in her family has had breast cancer. After carefully weighing her options, she chose CPM. Given her circumstances, that seems like a very wise choice to me.

Orenstein is right that women without BRCA mutations are having a lot of unnecessary surgery that generates its own risks. I’m sympathetic with her desire to inform average women with breast cancer and encourage them to make medically sound choices. I too would like to see fewer unnecessary mastectomies performed on average women. But if that change is going to come, let it come from women themselves and not from a paternalistic medical industry refusing to provide women with the healthcare they so desperately want.

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The Psychology of Prophylactic Mastectomy

I ran across Peggy Orenstein’s NYT article Our Feel Good War on Breast Cancer from April and found myself nodding along to it. She touches on a lot of important points: the way survival rates can be misleading, that self-exams don’t save lives, that mammography has its own risks and can lead to over-diagnosis, the problem with generalized “awareness” of breast cancer without research dollars or action to back it up, etc. Even though I knew many of these things already, pinkwashing ideology can be hard to shake off: it’s everywhere and it’s relentless. I find it refreshing to read an essay that so succinctly and elegantly breaks down the myths of breast cancer and pinkwashing. Go read it if you haven’t already.

Orenstein’s NYT article talks about how early diagnosis doesn’t necessarily save lives, but it certainly extends a woman’s knowledge that she has cancer or, in many cases, pre-cancerous conditions like DCIS. It also forces a woman to take action, which leads to overtreatment, unnecessary surgeries, and emotional turmoil. If left untreated, many of these women would never develop breast cancer. Some would, however, and at this point it’s impossible to separate those women whose DCIS will become cancer from those women whose DCIS will remain simply DCIS. As a result, many women are overtreated to save those few.

BRCA+ women face this uncertainty in an extreme way. Our unprecedented knowledge of our hereditary risk leads to overtreatment, unnecessary surgeries, and incredible emotional turmoil for women who otherwise would never develop breast cancer. Like women diagnosed with DCIS, women diagnosed with “Hereditary Breast and Ovarian Cancer Syndrome”–the blanket condition for BRCA+ women–are told that many of them will develop breast cancer and some of the will not. And similar to women with DCIS, there’s no way to tell at the moment which BRCA+ women will be the unlucky ones who actually develop cancer.  It’s a sad, but unavoidable fact that genetic testing casts women who might otherwise live healthy, cancer-free lives into these uncertain waters.

Orenstein points out that women with breast cancer routinely overestimate their chances of having a recurrence and then this misinformation becomes the basis for the choice to have mastectomy of both the cancerous breast and the other healthy breast. Orenstein, who is not BRCA+, considered mastectomy of her non-cancerous breast. Her doctor told her that this would be a psychological, not a medical, choice since her chances of a second recurrence was low. Orenstein chose to keep her healthy breast. I don’t want to question this choice in any way, but I do want to question her doctor’s Cartesian opposition of the merely “psychological” with the objectively “medical.”

Here’s why: my biggest fear as a BRCA+ woman is not that I will develop cancer if I choose to keep my currently healthy breasts. My biggest fear is that I will spend my life doing intense surveillance and I will die in my sleep at 102, utterly cancer free, but having lived a life nonetheless defined by the threat of breast cancer.

At the moment, I undergo surveillance two-three times a year. Last time, the 3 appointments that I originally scheduled for a mammogram, manual exam, and ultrasound ballooned into 9 appointments when my scans came back with suspicious blips on them–and my scans always come back with suspicious blips on them. Soon I was booked for an MRI, another mammogram, two more ultrasounds, a biopsy, and full bloodwork. Surveillance took over my life for a two month period. It’s expensive (all those copays!), it’s disruptive to my work and personal life, and most of all it’s emotionally exhausting. It happens every 4 to 6 months.

With my genetic makeup and family history the odds that I will die cancer free are pretty small, but still possible. As I peer into my future, I see 40+ years of tests and scans, poking and prodding, endless waiting rooms and doctors in white coats, waiting for test results, tears and sleepless nights. Assuming a minimum of 5 appointments for surveillance, twice a year (a conservative estimate, but still), I’m looking at 400 appointments for surveillance alone before the age of 70. Need I repeat that surveillance does nothing to prevent cancer?

The most horrific thing that I can think of is not that all this testing will find cancer, but that it will never find anything and I will have wasted my life being afraid and hyper-vigilant. And so I have chosen prophylactic mastectomy not simply with the hope that it will dramatically lower my risk of breast cancer, but also with the hope that it will bring me a modicum of psychological wellbeing. There’s nothing “merely” psychological about this choice. Mind and body are connected. The psychological trauma of being BRCA+ cannot be underestimated and it has a direct impact on a woman’s quality of life and physical well being.

Not so long ago feminist health activists were fighting for women with breast cancer diagnoses to keep their breasts. The push for less invasive treatments, for lumpectomy and chemotherapy and radiation, was and is important. The emphasis on every woman’s right to bodily integrity, to not have her breasts viewed as expendable by a cavalier patriarchal medical industry, has changed cancer treatment in the United States for the better. But the lessons learned by the feminist health movements of the 1970s and 1980s about survivors in general cannot easily be mapped onto BRCA+ bodies. The ethical choices we face are knotty and feminism has not yet tackled them.

I don’t want to argue that prophylactic surgery is an unmitigated good: as every BRCA+ woman who has considered surgery knows (and what BRCA+ woman hasn’t at least considered it?), it’s most definitely mitigated. I don’t want to idealize surgery or depict women who choose surgery as brave or depict women who choose surveillance as weak. As I’ve said before, the truth is BRCA+ women don’t have good options and until we have better options it is often difficult to even know what constitutes a good choice. In the meantime, these choices are incredibly personal and prophylactic mastectomy is only “good” if it brings BRCA+ women emotional peace and physical well being.