Sexualizing cancer risk

Have you seen the The Cancer Sutra website? It promotes having people check their partners for cancer during sex.

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“Because fear of cancer can be as bad as cancer itself.
Because the earlier you detect cancer, the greater the chances
of treating it successfully.
Because fear, like cancer, may have the power to spread”

The idea that “the fear of cancer can be as bad as cancer itself” isn’t new to high risk women. Studies have shown that testing positive for a deleterious BRCA mutation has the same psychological impact on a woman as being diagnosed with cancer. But Cancer Sutra isn’t for high risk women, or even for women in general. It’s for everyone, regardless of gender or risk.

I can’t help but think of Maren Klawiter’s work on the biopolitics of breast cancer. Klawiter talks about how medicalization has sucked us all into the breast cancer continuum. Regardless of our family histories, our genes, etc., every woman resides on the continuum. We are all risky subjects. We’re taught to fear cancer and fear our potentially-cancerous bodies from an early age: to monitor ourselves and submit to screening in order to be good little patients. There’s a lot of money to made off risky subjects.

Of course, cancer and sex do overlap. Women who’ve had breast cancer and women who’ve had mastectomies must confront the knotty relations between cancer and sex all too often. That’s inevitable when dealing with surgery to an erogenous zone as highly fetishized as the breast. But this campaign is different: the Cancer Sutra wants people without high risk, without a diagnosis, without post-surgical or post-treatment bodies, to sexualize cancer. And it’s all wrapped up in a glossy package with pro-sex, queer friendly prints for sale.

The Cancer Sutra shows just have far the discourse of cancer risk has seeped into the most intimate corners of people’s lives. Now it’s not just women being targeted. As we’re constantly being reminded on breast cancer social media, men get breast cancer too–and prostate cancer and testicular cancer, etc. (you gotta love the insistent “WHAT ABOUT US MEN!” talk that irrupts in every women-dominated space). We’re beyond the breast cancer continuum here. Now all human beings can live in a constant state of cat-like cancer awareness.

Sure, a lot of people get cancer, and telling people to look out for it might seem like a no brainer. However, once again individual solutions are being posed to the systemic problem of the cancer epidemic. It’s awfully convenient, given the ruthlessly expanding cancer continuum and the ever hungry cancer industry, that we’re told to take individual responsibility for a phenomenon so very far outside of our personal control.

Eat right, exercise, think happy thoughts, and you won’t get cancer. Screen constantly, report for checkups like a good little soldier, and you won’t get cancer. If you do somehow get cancer, then it will be caught early and you’ll be a survivor. If you don’t, your cancer will be caught late, your prognosis will be bad, and it will be your own fault. Popular discourses on cancer focus on individual responsibility and individual blame. It’s much easier than fixing widespread environmental pollution, contaminants in our food and personal care products, genetic mutations, and just plain old bad luck. It’s also a lot cheaper.

The Cancer Sutra promotes the idea that groping around your partner’s body to feel for tumors is fun and sexy. Nevermind that it doesn’t actually tell people what they should be looking for during all this hot sweaty orgasmic DIY cancer screening. Nevermind that it suggests early detection is effective for all cancers (it categorically is not). Or that it suggests all cancers act alike (they categorically do not). Or that it suggests all cancers progress neatly from stage 1 to stage 2 to stage 3 to stage 4 (the don’t). And that it suggests individuals can interrupt that tidy progression to save their own lives (sometimes, often not).

If all that wasn’t troubling enough, the Cancer Sutra promotes the idea that we–each and every one of us–should be thinking about cancer rather than pleasure during sex, or rather that we should be finding pleasure in thinking about cancer during sex. How perverse is that?

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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.

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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!]

Women Offered Bribes to Have Pap Tests: Guest Post

Amazing post on insurance company efforts to make women get unnecessary pelvic exams, in this case Pap smears.

forwomenseyesonly

Screen Shot 2014-09-09 at 7 25 24 PMThis is a guest post written by a valued contributor to this blog, who wishes to remain anonymous:

I have this health plan. My doctor was very nice when I told her that I did not want a Pap or pelvic exam, and she hasn’t hassled me about it. The health care plan, on the other hand, seems perturbed that I haven’t toed the line and agreed to have a Pap. A few weeks ago I received this “invitation” in the mail. It offers a bribe of a $50 Target gift card if I go for a Pap before the end of 2014.

I think it is VERY important to note, at this point, that TARGET HAS NOTHING TO DO WITH THIS. They are NOT sponsoring this, donating the gift cards or participating in this ruse in any direct way. The bribe just happens to be a gift card from…

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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.

 

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.