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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“The Mammogram Myth”

Gayle Sulik has a great article on what she calls “The Mammogram Myth” up at Psychology Today.

“Following hundreds of thousands of women over long periods of time, randomized clinical trials have found that very few women, only about 15 percent, have their lives saved by routine mammogram screenings. Some studies put the screening-associated reduction as low as two percent. The problem is that some breast cancers don’t show up well on mammograms, or at all; some cancers, even though they may be small, have already spread throughout the body; and some of the most aggressive types of breast cancer show up between mammograms.

Although increased screening has led to an emphasis on early detection as the way to reduce cancer deaths, universal screening has not translated into a reduction in the number of invasive cancers (i.e., the types that have the capacity to spread and cause death). With rates of recurrence at 20 to 30 percent even 15 years or longer after diagnosis, an average prognosis of only one to three years for people whose cancer has spread to distant organs, and approximately 40 thousand deaths from the disease year after year, “early detection” does not accurately describe the scenario for most breast cancers. Yet, the seemingly unequivocal and unwavering support of some doctors, celebrities, radiology centers, and professional mouthpieces still promote a one-size-fits-all approach to breast cancer screening even when they fail to support diagnostic mammograms (i.e., those used to help make a diagnosis once signs or symptoms have already appeared).”

It’s clear that mammograms are not the panacea for detection and treatment that they initially seem. But once again, BRCA+ women are in a different situation than normal women when it comes to mammograms. Frequent screening pays off for BRCA+ women, as Stanford’s awesome Decision Tool for Women with BRCA Mutations shows.

Still, mammograms have their downsides for BRCA+ women. They’re uncomfortable, they’re expensive, they require insurance, they take time and energy, they are emotionally draining, and most importantly they don’t always detect cancer early, particularly in young women.

What’s more, the Mammogram Myth makes things more difficult for BRCA+ women because it gives the general population the impression that mammograms are enough to prevent or cure cancer. Many BRCA+ women have had well-meaning family members, friends, or acquaintances tell them the equivalent of “so you have a mutation, big deal. Just get more mammograms.”

My point here is that myths about the effectiveness of mammograms in general make life that much harder for BRCA+ women in particular. Moreover, as money pours into programs and propaganda that advance the mammogram myth, like those run by Komen, research that seeks to better diagnose and treat breast cancer are underfunded. As with some many things BRCA+, we need better options.

 

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“Mamming”: the not trend sweeping no nations

“MAMMING”! It’s a fad that’s fab!

This is what I thought when I saw this article:

Sassy Gay Friend thinks you need to reconsider posting these pictures on the internet.

Two women named Michelle Jaret and Michelle Lamont “invented” “mamming” to raise “awareness” about mammograms. The breasty equivalent of bygone internet memes like planking, “mamming” is supposed to be a fun, G-rated way to encourage women to get screened for breast cancer. You can see more examples at http://www.thisismamming.com, but why would you want to? 

I’m feeling increasingly suspicious of mammograms these days, particularly the way they are touted as preventative care. A quote from one of the mammo-Michelles illustrates this point well: Michelle Lamont (who works for an advertising agency, of course) says “When I was sick, I asked my doctors about a cure – one actually told me that the best cure we have is prevention. […] Prevention is screening like mammograms and self-exams and they are the best tool we have to catch cancer early, and catching it early is how we beat it.” For the record, mammograms do not prevent cancer. Period. Full stop. If categorizing mammograms as preventative care for insurances purposes makes them more affordable and more widely available, then I’m for it, but let’s not pretend that it cures anything. Survival rates for breast cancer have more to do with the biological makeup of a woman’s particular tumors than with catching cancer early: you can catch cancer at stage one and still die from it. Happens all the time. Mammograms are a good tool, women need them, and BRCA+ women need them more than most, but they are not magic bullets for breast cancer prevention or treatment.

As for “mamming” (you don’t actually think I’m going to use that term without scare quotes, do you?), let me count the ways that I hate it:

1. OMG BOOBS! On top of the things! BOOBS ON THINGS are so interesting!

2. It’s important to Raise Awareness. Because people aren’t already aware of breast cancer. Most people have never heard of it. I heard it happened to a woman in Idaho who is a friend of my cousin’s boyfriend’s boss’s ex-wife, but I can’t be sure.

3. Humor is a totally appropriate way to deal with a deadly, gory, disfiguring disease that destroys people’s lives. It’s hilarious, don’t be so uptight. I wish that I could see the funny, but I can’t because I threw away my sense of humor when I became a card carrying feminist.

4. It claims to try to make fun of the awkwardness of mammograms, so that more women will get them. But is awkwardness keeping women from getting mammograms? I doubt it.

6. It claims to be G rated, but at the end of the day it sexualizes breast cancer. Again.

7. Almost all the women in these photos are in their 20s. Should women that young be encouraged to get mammograms? No. Not unless they have a BRCA+ mutation or a very, very strong family history of breast cancer, in which case they probably don’t need to be told to get screening.

8. Putting aside the issue of how overhyped mammograms are, this lame meme is not going to inspire anyone to get a mammogram.