The decision to surgically remove a breast either to treat or prevent cancer can never be taken lightly. And, in our breast-obsessed culture, for many women this medical decision is further complicated by societal pressures and norms.
Thankfully, the days of Halsted's radical mastectomy are behind us. No longer do women go into surgery to find out if they have breast cancer and wake up to their entire breast removed, including muscle and in extreme cases ribs. Women now have the choice of mastectomy (including a nipple-sparing technique) or lumpectomy with radiation. How and why women make these decisions is complicated and always personal.
As the watchdog of the breast cancer movement, part of our work is to ensure that women have access to unbiased, evidence-based information in order to make their own healthcare decisions. As a feminist organization, we always value and respect women's diverse experiences and choices, even when those choices may be controversial or unpopular. Some women choose the standard of care, while others may opt for either more or less than the current standard of treatment.
Last year, author Peggy Orenstein shook up conventional thinking about breast cancer with her widely-circulated piece "Our Feel-Good War on Breast Cancer" which rightly critiqued pink ribbon culture and the over-emphasis on mammography screening. This past weekend, Orenstein published an opinion piece in The New York Times titled (by the editors) "The Wrong Approach to Breast Cancer," which has again sparked controversy. Orenstein has been diagnosed with breast cancer twice and recently faced the question of whether to remove her healthy breast when undergoing mastectomy for the affected breast. In her opinion piece, Orenstein explores why so many women at average risk of breast cancer choose contralateral prophylactic mastectomies, despite the evidence that doing so doesn't reduce their chances of dying from breast cancer. Orenstein writes: "after a decades-long trend toward less invasive surgery, patients' interest in removing the unaffected breast through a procedure called contralateral prophylactic mastectomy (or C.P.M., as it's known in the trade) is skyrocketing, and not just among women like me who have been through treatment before."
Orenstein recognizes that there are many reasons that women may choose C.P.M., including not only the hope it will reduce their chances of death but also the desire to be physically "balanced." And there is clear evidence that in some (rare) situations where the risk of breast cancer is so extremely high, surgery to remove a healthy breast can reduce the risk of death for women. For example, Angelina Jolie recently brought national attention to the situation for women with BRCA mutations, for whom prophylactic mastectomy (in an effort to reduce the risk of developing cancer) can save lives. But the evidence is equally clear that for most women, this is not the case, including women who have already been diagnosed with early stage cancer.
Earlier this month, researchers from the University of Minnesota published the most comprehensive study to date evaluating the survival benefit of C.P.M. in the Journal of the National Cancer Institute. Researchers noted the remarkable increase in rates of C.P.M. and wondered if there may be "an exaggerated perceived benefit from the procedure" by patients. Breast cancer becomes fatal when it spreads throughout the body -- when it metastasizes, but removing a healthy breast does not reduce the chance that the original tumor will spread throughout the body. Even when the researchers "tweaked the numbers, nearly doubling the risk of contracting a second cancer and exaggerating the aggressiveness of a new tumor and the effectiveness of C.P.M.", there was no group of women who was even 1 percent less likely to die of breast cancer after removing the healthy breast.
The question Orenstein raises is why so many women who are at relatively low risk of dying from breast cancer choose to remove a healthy breast "just to be safe" -- despite the evidence that they are in fact no "safer" with or without C.P.M.
When we posted Orenstein's article on Breast Cancer Action's Facebook page, the responses came quickly and heatedly, and the conversation was emotionally charged. Conversations about breast cancer screening and treatment choices are always understandably charged -- we are talking about life and death, and incredibly personal medical decisions. As a feminist women's health organization, we recognize that different people make difference choices -- and we respect the fact that the "right" choice for one person wouldn't be for another. Women should never be judged, shamed, belittled, or second-guessed for their health decisions.
We also recognize that these choices are shaped and constrained by real-world options and circumstances -- and too often women diagnosed with breast cancer feel they are choosing between two terrible choices. Every woman deserves access to evidence-based information to inform our choices and decisions, even as we demand far better options.
Since Breast Cancer Action's founding, we've explored how women's choices related to breast cancer are limited, constrained, influenced and rejected. We've worked to provide balance and an alternative to the ways women are asked, expected, and pressured to have breast cancer procedures and treatments even if the evidence shows it does not save lives. We do this not to tell women what they should do, but to ensure that women are able to explore the full range of their choices as they grapple with life-changing medical decisions. Informed consent must include an understanding of both potential benefits and harms of a particular procedure or treatment.
When discussing C.P.M., in addition to the lack of survival benefit, there are the significant risks of the surgery itself to be considered. As Orenstein elaborates: "Breasts don't just screw off, like jar lids: Infections can occur, implants can break through the skin or rupture, tissue relocated from elsewhere in the body can fail. Even if all goes well, a reconstructed breast has little sensation."
Any major surgery comes with risks and complications. Not only does mastectomy itself come with the general risks of anesthesia (which are greater for people in poor health), but there's also risks such as infection, necrosis, and all-too-common seromas. If women choose reconstruction, there are additional risks and complications -- consider that 46 percent of women with silicone gel implants and 21 percent with saline implants undergo at least one re-operation within three years.
Many women, and Orenstein herself, note that there are quality-of-life related reasons why women opt for C.P.M. above and beyond hoping the surgery will help them survive breast cancer. Some women prefer to have both breasts removed because they desire symmetry, whether they choose reconstruction or not, or have back or neck pain with only one breast. As one woman on our Facebook page put it, "if not choosing reconstruction then we are stuck looking like a one-humped camel."
None of these choices happens in a vacuum. The year-round pink ribbon awareness campaigns and marketing ploys demand attention to breast cancer through relentless fear-mongering and false promises. One nasty side effect of the mainstream breast cancer awareness movement is now there are many women -- and even young girls -- who fear their breasts, viewing them as harbingers of disease, ticking time bombs. Combine this steady diet of pink ribbons on the one hand, and selling women a lifetime of self-doubt and body hatred on the other, and some women suggest this surgery is a "trade up," that fake breasts are better than real breasts.
Humans are notoriously bad at internalizing statistics and absorbing the implications of research in our individual lives. This challenge is bigger than breast cancer. It's hard in any health situation for people to incorporate statistics and studies into their decision-making. Having trouble applying statistics to your own individual situation does not necessarily cause fear and overestimation of risk -- it can and does lead to a false sense of security in some cases.
But with breast cancer, it's a bizarre truth that many women in the U.S. overestimate their risk of this disease 'thanks' to the pervasive breast cancer awareness movement. Women who are 40, for example, estimate that their breast cancer risk is more than 20 times the actual likelihood that they will develop breast cancer over the next decade. And women who have cancer in one breast overestimate their risk of cancer in the other breast by sixfold. The result of this culture of fear of breast cancer can lead women to do anything and everything to treat breast cancer, whether or not the evidence shows it impacts survival rates. In this culture of fear, "peace of mind" for women (and their doctors) becomes the key objective -- even if that peace isn't backed by sound evidence.
Cancer terrifies us to our very core -- and for good reason. One in three women will get cancer at some point in her lifetime; one in eight will get breast cancer. Breast cancer is the second leading cause of cancer-related death for American women, after lung cancer. Any woman facing a breast cancer diagnosis and the complex set of fears it brings needs access to evidence-based information with which to navigate the difficult treatment decisions she faces.
There is no single right answer for all women, but in order for each of us to make the choice that is best for us in our own circumstances and lives, we must balance fear with facts, and to do so, we need good information like the studies to which Orenstein is pointing. After that, we must trust the fact that every woman is doing her best in difficult circumstances and honor her decisions as her own.