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!]

Does abortion cause breast cancer?

Does abortion cause breast cancer? No. No, it does not. Also, feminism does not cause breast cancer, in case you were wondering.

Get Up Swinging tackles anti-abortion propaganda that preys on women’s fears of breast cancer.

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.

 

HBOC is a Social Justice Issue

The NYT had an excellent article last month about African American women and breast cancer. It’s full of choice quotes, so here are a few:

  • “Over all, black women with a breast cancer diagnosis will die three years sooner than their white counterparts. While nearly 70 percent of white women live at least five years after diagnosis, only 56 percent of black women do. And some research suggests that institutions providing mammograms mainly to black patients miss as many as half of breast cancers compared with the expected detection rates at academic hospitals.”
  • “Researchers from the Sinai Institute last year analyzed breast cancer cases in the country’s 25 largest cities and found that African-American women with breast cancer were, on average, 40 percent more likely to die of their disease than white women.”
  • “Doctors and health care researchers say the reasons behind the black-white cancer divide are complex. Economic disparities that disproportionately affect African-Americans explain some of it. Years of racial discrimination and distrust of the medical establishment dating back to the Tuskegee, Ala., syphilis experiments on black men in the 1930s continue to influence health decisions made by African-American families in the South.Lack of health insurance among low-income and self-employed women was also cited as an obstacle to timely care, a problem that may be eased if some of them gain insurance through the Affordable Care Act.”
  • “I had to get cancer to get health insurance,” Ms. Singleton said, a tear rolling down her cheek. “I’ve been one of those people waiting for Obamacare, waiting for health insurance. And this is how I finally get it.”

In other words, breast cancer is a social justice issue insofar as race and ethnicity influence women’s experiences of it in inequitable ways. Although the article doesn’t really touch on genetic issues, BRCA mutations too are racially inflected: it’s well documented that some ethnic groups, particularly people of Jewish descent, are more likely than the general population to carry a deleterious mutation.

While there’s been a lot of research on Jewish women with mutations, there’s been much less on African American women with mutations. A few months ago, I wrote a post about race and BRCA1/2 that focused on black women. The post was based on an article that turned out to be filled with false information. I took it down so as not to spread more misinformation about HBOC. Still, the racial dimensions of BRCA mutations are something I’d like to know more about, but which I haven’t found much good information about. I’ll keep looking.

One source that comes to mind, however, is Joanna Rudnick’s documentary film In The Family, which tackles the question of race and BRCA mutations in African American and Latina families. She interviews a group of African American women in Chicago, one of whom explains that black women do not seek out genetic testing because they don’t go looking for trouble–presumably they have enough already.

A recent study “found that the Hispanic women had a higher prevalence of the harmful BRCA1 mutation than white women, and the highest prevalence was among young African-American women.” Other findings:

The researchers found that Ashkenazi Jewish women with breast cancer had the highest rate of the BRCA1 mutation, at 8.3 percent.

For Hispanic women with breast cancer, the rate was 3.5 percent. Among non-Hispanic Caucasians, the rate was 2.2 percent, and among Asian women it was 0.5 percent.

For all African-American women, the rate of the mutation was 1.3 percent, but for those under 35 who had breast cancer, the rate was 16.7 percent, Dr. John’s group found.

This may be obvious, but it’s also worth saying that every woman experiences her BRCA+ body differently and that these experiences are heavily mediated by race and socio-economic factors. BRCA+ women come from many backgrounds, yet the HBOC community is predominantly white. I’m not entirely certain why this is, although I have some theories that I’m mulling over. Nonetheless, white BRCA+ women–myself included–need to help construct spaces that welcome women from many different backgrounds, not only in terms of race, but also class, sexuality, etc.

Scaremongering non-BRCA+ young women

Bright Pink recently posted an article on Facebook about breast cancer risk factors for college-aged women with the following quote and commentary:

“‘Unfortunately, college-age women generally do not consider themselves at risk for breast cancer,’ said Dr. Mercier. ‘However, there are several risk factors that contribute to the development of breast cancer that need to be understood early in life to prevent the development of breast cancer down the road.’

Further support for starting this conversation NOW. Join us in learning what you can do as a young woman to reduce your risk for breast and ovarian cancer. http://www.brightpink.org/awareness-to-action/risk-reduction/’

Huh?

The article ominously notes that breast cancer “can strike at any age.” That’s true, but misleading. Breast cancer can indeed strike at any age. The youngest breast cancer survivor was just 11 years old. However, there’s a difference between what’s possible and what’s probable. Your average 30-year-old woman has just a .44% risk of breast cancer. The vast majority of women in their 20s do not get breast cancer.

You might say that it can’t hurt to make women in their 20s aware of their future risks. After all, 1 in 8 women in the United States will get breast cancer, which means that an American woman has a 12% risk of developing breast cancer in her lifetime. Shouldn’t young women be warned? I’m skeptical of that argument. Most women are already “aware” of breast cancer. They know that they should eat healthy and exercise. They know that they should have annual gynecological visits that include breast exams. They know that they are supposed to perform self breast exams (despite the fact that self exams have not proven beneficial at early detection).

At the same time, American women are at high risk for many different diseases: diabetes, heart disease, lung cancer, osteoporosis, Alzheimer’s, and many others. In fact, women are greater risk for developing lung cancer and heart disease than breast cancer. Should we be warning them about these diseases too? Are young women supposed to spend their time “preventing” these diseases? That information is already out there, saturating the news, twitter, Facebook, women’s magazines, and so many other venues.

I do think that women in their 20s should be informed about breast cancer, just as they need to be informed about reproductive health in general, sexually transmitted diseases, and birth control. But there’s a difference between being informed and scaremongering.  Note the rhetoric: breast cancer “strike[s]”–it lays in wait like a biological cobra or tumorous lightning bolt; no one is safe. While there is a grain of truth here (insofar as breast cancer cuts across age, class, race, culture, and other vectors of identity), the truth is most women in their 20s do not need to be extra vigilant about breast cancer.

Moreover, it seems odd to me that Bright Pink, an organization for young BRCA+ women, would be advocating this much foreknowledge and vigilance for young women in general. BRCA+ women live in fear of cancer and with good reason. Those who test positive for a mutation at a young age spend most of their lives haunted by the threat and/or experience of cancer, but that doesn’t mean that average women of average risk should as well. There is such a thing as too much awareness, especially when it’s not backed up by good science and common sense. We need to find the line between promoting health and promoting hypochondria.

Why are people REALLY getting cancer so much?

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There’s a weird article in the NYT this week by George Johnson called “Why Everyone Seems to Have Cancer.” He proposes that, thanks to innovations in the treatment of other diseases, particularly heart disease, people are living longer than ever. Cancer, he suggests, goes hand in hand with old age: since people are outliving heart disease and other illnesses that used to be deadly, more of them will grow old and get cancer.

I don’t buy it. The theory that old age equates with more cancer isn’t compatible with BRCA-related cancers. BRCA+ women who were born after 1960 have much higher rates of cancer than their BRCA+ positive ancestors. In fact, HBOC is being detected on average 10 years earlier in baby boomers and their daughters than in previous generations. In other words, women from the same families, who carry the same genetic mutations, are getting cancer more often at younger and younger ages. That means that these higher rates of cancer cannot simply be the result of people living longer.

What’s changed between 1910 and 1960 to cause younger BRCA+ women to have higher rates of cancer than their grandmothers did? Widespread corporate pollution. The ubiquity of parabens and plastics. Pesticides on vegetables and lawns. Carbon emissions. Hormones pumped into dairy and meat. Increasing use of toxic chemicals in food production and household products. The Breast Cancer Fund has a long list of environmental carcinogens that women encounter regularly, yet Johnson obtusely overlooks the well-documented role played by environmental factors in causing cancer.

Johnson implies that high cancer rates are the byproduct of affluence: you’re going to die somehow, and if you live long enough it’ll probably be from cancer. Indeed, as Breast Cancer Action notes, women in industrialized nations have higher rates of breast cancer than women in unindustrialized nations. But cancer risk within industrialized countries varies considerably by race, class, and region. Racial minorities and the poor have long shouldered the burden of environmental degradation and “environmental racism” surely influences cancer rates. Moreover, women’s reproductive systems are often the first places to register environmental pollution.

Feminists have been advocating for more research into the environmental causes of breast cancer for decades, but such demands have often gone unheeded because they challenge American capitalism. Figuring out what causes breast cancer and taking steps to prevent it would require that corporations stop polluting our food, our communities, and our households. It would require a massive overhaul U.S. law and reformation of enforcement agencies. It would be costly.

Conversely, pinkwashing and mammography are compatible with neoliberalism. The onus shifts to the consumer, who must take on the responsibility for early detection and treatment–all of which is extremely lucrative for the cancer industry (See Gayle Sulik’s Pink Ribbon Blues for more on the cancer industry). In other words, eradicating the environmental factors that contribute to growing rates of cancer is bad for corporations, while treating growing rates of cancer is very very good for their profit margins.

Johnson’s attitude is fatalistic and, worse, utterly depoliticized. He makes cancer seem inevitable, something that we should accept as a consequence of long life expectancies in wealthy countries. I call bullshit. Cancer is not inevitable, even for BRCA+ women (even though it sometimes feels that way). American women need to demand a non-toxic world from politicians and corporations, not blithely accept the bodily consequences of mass pollution and corruption.

Non-industrialized countries have lower breast cancer rates than industrialized countries. – See more at: http://www.bcaction.org/our-take-on-breast-cancer/environment/#sthash.lrHlO731.dpuf
Non-industrialized countries have lower breast cancer rates than industrialized countries. – See more at: http://www.bcaction.org/our-take-on-breast-cancer/environment/#sthash.lrHlO731.dpuf

Gross Moments in Breast Cancer History #1: Cannibalistic Medicine

I’m currently reading James S. Olson’s history of breast cancer, Bathsheba’s Breast: Women, Cancer, and History. I’ll probably review it when I’m done (spoiler: so far, it’s excellent), but I wanted to share a moment that was icky enough to make me write “!” in the margins.

Gross-out Moment #1 (“#1” because there are more):

Before the eighteenth century, doctors believed that breast cancer was caused by an imbalance of the “humors” (a theory they got from the ancient physician Galen). They theorized that breast cancer was caused by a build up of acidic “black bile” in the body. This was because breast cancer was often only detected at a very late stage when tumors had burst forth through the skin and the ulcers seeped black goo, among other things. Lovely image, right? That’s not even the gross part.

In 1751, a French doctor named Jean Astruc, the king’s personal physician, wanted to prove that breast cancer was not caused by acidic buildup in the body. Here’s how he did it:

“In 1751 he took a piece of breast tissue, along with a slice of beef, burned them both in an oven, and then chewed on both specimens. Detecting no difference in taste, he decided the tumor tissue did not contain unusual amounts of bile or acid, and he subsequently repudiated the black bile theory of cancer” (32).

Yes, he ate a piece of someone’s breast to test a scientific theory. There’s probably a metaphor here somewhere. I’m not sure how cannibalism disproves the humors theory of breast cancer, but it was enough to convince his contemporaries.

 

Lululemon founder’s wisdom on breast cancer

Lululemon founder and notorious asshole Chip Wilson thinks that ball busting businesswomen created the breast cancer epidemic:

“Breast cancer also came into prominence in the 1990’s. I suggest this was due to the number of cigarette-smoking Power Women who were on the pill (initial concentrations of hormones in the pill were very high) and taking on the stress previously left to men in the working world.”

You heard it here folks: all those entrepreneurial women gave themselves breast cancer by working in the big bad world. They should’ve stayed home and done some yoga instead, then they’d be happy, skinny, and cancer free.

Seriously, why are women still buying from this company? I don’t care how good their overpriced pants make your ass look. Wilson has declared that he named the company Lululemon because he thought it was funny that Japanese people couldn’t pronounce it. They carry sizes 2-12, when the average American woman is a size 14. They’re famously fatphobic. They plaster their bags with crazy Ayn Rand slogans. And their merchandise is shotty.

On a related note, there’s a great post on pinkwashing in the yoga community over at It’s All Yoga Baby. I have to admit my heart sank when I saw Manduka pushing pink yoga mats in October.