When the planets align in the breast cancer universe things get interesting. It has been an unprecedented four-five weeks. The first planet to get into position was that of oral arguments delivered to the Supreme Court of the United States on the legality of the U.S. Patent and Trademark Office’s practice of granting patents on human genes. The next two planets to align were the publication of Peggy Orenstein’s game changing New York Times article “Our Feel-Good War on Breast Cancer” and the news that Nancy G. Brinker™ received a 64% pay raise. The fourth planet to line up was the announcement that a Reader’s Digest poll named Brinker™ one of America’s most trusted celebrities (a list that includes Pat Sayjak, Clarence Thomas, and Rachel Ray). The fifth planet to assume its position was the death of breast cancer advocate Barbara Brenner. And the sixth and final planet–with rings and moons–was Angelina Jolie’s New York Times op-ed in which she announced that she had undergone a prophylactic bilateral mastectomy.
As these events converged, the Twitterverse and Blogosphere went Super Nova. In a universe where the biggest news is usually who had their latest surgery, who delivered the latest salvo against pinkwashing, and who got lost in a #BCSM TweetChat, this sequence of events has been–in a word–epic.
I will devote the next few blog posts to a breakdown of this confluence of events. But for this first one, I’d like to look at Peggy Orenstein’s article “Our Feel-Good War on Breast Cancer,” (New York Times, April 24, 2013). This article is a game changer, and I am not really known for random hyperbole.
While I enjoy anything that intelligently unmasks organizations that have lost their way in that way that Komen™ has, my thrill came from Orenstein’s exploration of a topic that is controversial and by virtue of that presents an opportunity to start a conversation. In this case, D.C.I.S. and preemptive–or prophylactic–mastectomy.
There is as yet no sure way to tell which D.C.I.S. will turn into invasive cancer, so every instance is treated as if it is potentially life-threatening. That needs to change, according to Laura Esserman, director of the Carol Franc Buck Breast Care Center at the University of California, San Francisco. Esserman is campaigning to rename D.C.I.S. by removing its big “C” in an attempt to put it in perspective and tamp down women’s fear. “D.C.I.S. is not cancer,” she explained. “It’s a risk factor. For many D.C.I.S. lesions, there is only a 5 percent chance of invasive cancer developing over 10 years. That’s like the average risk of a 62-year-old. We don’t do heart surgery when someone comes in with high cholesterol. What are we doing to these people?”
Such a decision doesn’t come without serious reflection, nor would I characterize it as an easy one by any means. I have been spared from making a decision such a this, but my friend Crystal–along with countless other women–has had to face this diagnosis, weigh her options, and make decisions with which she was comfortable. Some have opted for amputation, others have not. Even though all of these women were faced with perhaps the hardest decision they will ever have to make, I am astounded by the increasing number of these amputations. It’s the 21st century and this is all that medicine has to offer?
I’ve already addressed the social and gender aspects to prophylactic amputation to some degree in my post Language. I can “get” that breasts aren’t vital organs and we can lead productive and fulfilling lives without them–often after having children, but so are testicles. I don’t see men getting those bad boys lobbed off after they’ve had their families to diffuse any testicular cancer threat. I wonder how quickly Lance Armstrong ran to the doc to get that second ball removed. Heaven forbid!
At present I am reading The Breast Cancer Wars: Fear, Hope, and the Pursuit of a Cure in Twentieth-Century America by Barron Lerner, MD (New York: Oxford University Press, 2001. Kindle edition.). Dense but well researched, I found myself sucked in to the careers of William Halstead and a handful of preeminent surgeons who carried his surgical legacy over the course of a century and more. Lerner argues that attitudes toward women’s bodies were driven by patriarchal prejudice that devalued breasts in aging women such that when a woman had finished bearing children and showed no further interest in sex (because we know that all women die inside when they turn 40), surgeons saw no reason to preserve the breast. Fold this into how the surgeon focuses on the craft of surgery separate from the individual (if they dealt with the patient at all) along with a patient culture of “doctor-knows-best,” and you wind up with the general assumption that the breast was “nonvital and functionless” and considered “a superficial easily disposable appendage.” (Loc 1090). In 1952, two Chicago physicians Richard Renneker and Max Cutler, noted that “[Her breasts] have served their purpose and she is now ready to accept their retirement.”
Retired breasts. I can see them lounging on a beach in Bermuda with a cocktail as I write this. Lathered in sunscreen. A little sunhat on the nip.
> “Did you have a mastectomy, Madge?”
< “Oh no, Betty, I retired my breasts. I think they’ve seen better days.”
> “O-kay . . .”
With regard to the radical mastectomy first introduced by William Halstead and modified in its various forms as part of his surgical legacy, Lerner argues that the authority of the surgical profession largely framed breast cancer from diagnosis to treatment. But society’s gender inequities both made possible and perpetuated increasingly radical forms of surgery to “cure” breast cancer. “Because male-dominated society devalued the breasts of aging women,” writes Lerner, “surgeons viewed these organs as particularly expendable.”
This was the 1950s, and even then a new generation of surgeons began to slowly question the need for such radical surgery. The introduction of biometrics and clinical trials (both of which were forcefully resisted at first), and the women’s movement would slowly change this surgical paradigm. But despite this evolution it seems that we have come full circle. Orenstein observes that with the pink movement having heightened awareness and–by extension–fear, many women are amputating their breasts when it is not clear that they really need to do so.
Of course many blogs are abuzz about Angelina Jolie’s decision to undergo a prophylactic bilateral mastectomy because she carries the BRCA1 faulty gene. Many individuals who have commented on this story whether on blogs, Facebook pages, or the New York Times article directly mention–in what appears to be a sense of palpable relief that their breasts are gone–are comments such as “So what do we need ’em for?” or “I’ve had my kids, I don’t need them anymore” or “I’m older now I really don’t need them”. I understand that for some this may be a coping mechanism–say “good riddance” enough and you will come to believe it. Are our breasts this expendable that we can speak to their value in such a perfunctory manner? Few women seem to stand up and defend their breasts the way activists did some thirty years ago.
Nicole, the woman behind the My Fabulous Boobies blog and Facebook page, always says something that makes me stop and think. “To me… it is not just a breast,” Nicole writes. “It [amputation] very much had a lot to do with my sexual experience as well as my body image and self-esteem.” Think about it: breasts are pretty damned central to our sexual experience. Lovers love to fondle, kiss, squeeze, and caress the breast. And I, for one, like them fondled, kissed, squeezed, and caressed. But hardly anyone raises this profound reality, choosing instead to focus on age and breastfeeding. Nicole goes on to say “I believe that if similar options were all that men were limited to… take off an inch of your penis (for example)… we would be considering other options for whatever disease was affecting it. While I’m fine with my breasts now… I do think that it is barbaric that part of the cure or treatment for this disease requires amputating breasts.”
Orenstein, too, wondered about the willingness of so many to choose amputation as a preventive measure. How is it that women were aggressively fighting to keep their breasts only three decades ago and now they are aggressively fighting to remove them? For many, this answer can be found in the culture that not only frames the disease but the way in which it is treated. Having detailed a woman with D.C.I.S. who would likely not develop cancer but opted for a prophylactic mastectomy anyway, Orenstein asks
Should this woman be hailed as a survivor or held up as a cautionary tale? Was she empowered by awareness or victimized by it? The fear of cancer is legitimate: how we manage that fear, I realized — our responses to it, our emotions around it — can be manipulated, packaged, marketed and sold, sometimes by the very forces that claim to support us. That can color everything from our perceptions of screening to our understanding of personal risk to our choices in treatment.
This is why Orenstein’s piece is, in my opinion, so profoundly transformative. This is the kind of informed and intelligent conversation we should be having now and always. Every day thousands of individuals are changed in profound ways as a result of the scourge of breast cancer; this level of horror cannot be left to be defined by a pink movement that devotes most of its resources on “prevention” and early diagnosis in lieu of a cure. (I’m not saying this isn’t important, but we need to fund research.)
My remarks are in no way a judgment of the women confronted by circumstances that require them to make these profound decisions–far from it. But unless we have these conversations–the ones that make us cringe, that make us cry, or the ones that make us angry–we lose the opportunity to move forward. That we are where we are today is in no small measure the result of patients, physicians, clinicians, and advocates who, in the past, questioned the status quo and asked a simple question: “Why?”
When you refuse to engage in a conversation that compels you to question your assumptions or to be open to a change in opinion, you make a decision. It is a conscious decision to remain shallow and intellectually obtuse. In the case of breast cancer, you must place your own self-interests above something that is much larger than you.
Among the hundreds of individuals who left comments on Orenstein’s article was Nancy G. Brinker™. She described this conversation as a “distraction.”
More on that next time.