drawing of a circlular clamp and curved scalpels

Breast Cancer Care: Sexism and Knowing versus Doing

A Rise in Unnecessary Breast Cancer Surgeries

A troubling trend in breast cancer treatment has surgeons scratching their heads. Since the late 1990s, more women with cancer in one breast have been opting to have both breasts surgically removed. For women without a genetic predisposition to breast cancer, this procedure – contralateral prophylactic mastectomy (CPM) – has little medical benefit: their risk of developing a separate breast cancer in the unaffected breast is low, around half a percent per year after initial diagnosis.[1] From the surgeon’s perspective, then, CPM is not a good choice because it provides little reduction in cancer risk while it doubles surgical risk.

Moreover, some see the procedure as a kind of retrogressive overtreatment that harkens back to a time in the nineteenth and twentieth centuries when faulty theories of cancer metastasis and rampant sexism led to what one historian described as a “no-holds-barred” surgical war on breast cancer.[2] While surgeons got to play the role of hero in this war, breast cancer patients were its undeniable victims. Brutal surgeries that removed major muscles and lymph nodes far beyond the breast left women not just disfigured and debilitated but also still sick with cancer. Usually performed as last-ditch efforts, these surgeries had no chance of curing disease that had already spread throughout patients’ bodies.

Thankfully, we’ve moved past the barbaric surgeries of the nineteenth and early-to-mid twentieth centuries. Ours is an era of trying to save lives but also preserve bodies, of wanting to make women as healthy as possible while also keeping them as whole as possible. Thus surgery is key but not king, and women have a real voice in their treatment plans. Their options are not limitless, but patients, not surgeons, are the ones who decide how much surgery they are willing to have.

grainy photo of a tumor in breast tissue
Ultrasound images of breast cancer. (Nevit Dilman/Wikimedia Commons)

So, if this is the case, why are more women choosing CPM over breast-preserving surgeries? Why are they defying their surgeons in order to have a more aggressive surgery that provides little medical benefit while introducing additional medical risk? If it’s true that we are back in a place of medical overtreatment, then it’s breast cancer patients who have put us there, not their surgeons. How do we explain this role-reversed situation in which women want more surgery, not less?

Here We Go Again, with the Irrational Women Trope

If you ask surgeons, one major reason for increased demand of CPM is pretty clear: women want the surgery because they are too scared to understand their breast cancer risk. Beginning in the early aughts, researchers began conducting studies of increased CPM demand. While these studies asked different questions and employed different methods, they yielded significantly similar findings – namely that increased use of CPM was fueled by patients’ inability to understand how little the surgery affects future breast cancer risk. Many studies associated this inability with fear, suggesting that women’s emotional reactions to breast cancer diagnoses impaired their ability to comprehend risk information.

For instance, one study found that women allowed their personal understanding of breast cancer risk to outweigh empirical evidence in their attempt to “regulate emotional response to a threatening situation.”[3] Another pointed to the “dense fog of complex emotions” that can “impair a patient’s ability to process information” and lead her to make “impulsive, irreversible surgical plans.”[4] Still another argued that, since CPM does not significantly reduce contralateral breast cancer risk, we must conclude that “CPM patients are not responding rationally to evidence-based recommendations for more conservative treatment—or that their surgeons are not making those recommendations with enough strength.”[5] And, putting it in even stronger terms, another study described increased use of CPM as a “knee-jerk emotional demand for aggressive bilateral surgery.”[6]

It is in this understanding of the CPM controversy where some of the most pernicious sexism in contemporary breast cancer treatment lies. Essentially, the consensus is that women are too irrational to know what’s best for them. A familiar trope? Yes, absolutely. But the problem feeding this trope is not familiar, at least not to physicians. In the simplest terms, the problem here is an inability to acknowledge that breast cancer risk is not just something that women know but also something that they do. To say that risk is something that women know, is to say that its meaning comes from the information it represents—information that must be deciphered and weighed when making decisions. But to say that risk is something that women do is to recognize that it is also a set of practices they must actively participate in. And in this case, those practices are imaging and diagnostic practices like mammography, ultrasound, MRI, and biopsy.

The Problem of Imaging and Diagnostic Overtreatment

A breast cancer diagnosis (even in the absence of a known genetic predisposition) automatically puts women in a high-risk screening category, even if their risk of developing a second cancer is low. While there is no consensus about screening recommendations for women in this category, many will be told to supplement their yearly mammogram with a yearly MRI, especially if they have dense breasts, are younger than 50, had lumpectomy without radiation, or had a lobular rather than ductal form of the disease.[7]

Adding an MRI to an annual mammogram doesn’t sound too burdensome. But for some patients, it’s a form of medical overtreatment that’s every bit as burdensome as the surgical overtreatment of CPM. In fact, for many women, the kind of diagnostic overtreatment caused by adding an MRI to a yearly screening regimen is more burdensome than surgical overtreatment. Why? Because while MRI is good at finding breast lesions, it’s not so good at distinguishing the malignant from the benign. Thus women often need follow-up tests like mammograms, ultrasounds, and biopsies to know if an MRI-identified lesion is cancer or not. These additional tests can take months to complete, costing patients not just time and money but also peace of mind as they live under the threat (however small) of a new cancer diagnosis until they get the “all clear.” For some women, by the time that “all clear” comes, so too has the next round of annual screening. And so the process starts all over again, turning breast cancer risk itself into a kind of chronic condition that has to be continually monitored.

As unorthodox as it might sound, many women choose CPM as a “cure” for this chronic condition. In other words, they have CPM so that they no longer have to do breast cancer risk through high-risk screening practices. Do most of these women understand their breast cancer risk? I believe they do. After all, the information is not all that complicated. But understanding risk and doing it are not the same thing. And until medicine can recognize this distinction, it will continue to characterize those who choose CPM as too irrational to know what treatment is best for them.

One way to help facilitate this recognition is to extend the idea of overtreatment beyond the realm of surgery to that of imaging and diagnostics. History has taught us important lessons about medicine’s regrettable surgical war on breast cancer. But those lessons shouldn’t prevent us from recognizing other forms of overtreatment. Having multiple scans and biopsies a year can create a medicalized existence for breast cancer patients, one that significantly diminishes their quality of life. And while we certainly cannot blame cancer surgeons for questioning the use of a surgery with little oncologic benefit, we also cannot blame women for wanting to lead less medicalized lives.

Breast cancer risk is something that women know and something that they do. And until they can do it in ways that don’t negatively impact their quality of life, I suspect that many women will continue having CPMs, no matter how accurately they understand breast cancer risk.

Notes

    1. I. M. Lizarraga et al., “Review of Risk Factors for the Development of Contralateral Breast Cancer,” American Journal of Surgery 206 (2013): 704–8.
    2. James Olsen, Bathsheba’s Breast: Women, Cancer, and History (Johns Hopkins University Press, 2002), 85. See also Barron Lerner, The Breast Cancer Wars: Hope, Fear, and the Pursuit of a Cure in Twentieth-Century America (Oxford University Press, 2001).
    3. A. Covelli et al., “‘Taking Control of Cancer’: Understanding Women’s Choice for Mastectomy,” Annals of Surgical Oncology 22 (2015): 388.
    4. Lisa Newman, “Contralateral Prophylactic Mastectomy: Is It a Reasonable Option?” JAMA 312, no. 9 (2014): 896.
    5. D. Baptiste et al., “Motivations for Contralateral Prophylactic Mastectomy as a Function of Socioeconomic Status,” BMC Women’s Health 17 (2017): 6.
    6. J.R. Benson and Z.E. Winters, “Contralateral Prophylactic Mastectomy,” British Journal of Surgery 103 (2016): 1250.
    7. Nehmat Houssami and Nariya Cho, “Screening Women with a Personal History of Breast Cancer: Overview of the Evidence on Breast Imaging Surveillance,” Ultrasonography 37, no. 4 (2019): 284.

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2 Comments

Colleen

Thanks so much for this thought provoking article. I am a medical social worker and have exactly these conversations w/women in hosp. I think you hit it right on the head with this:

“In other words, they have CPM so that they no longer have to do breast cancer risk through high-risk screening practices. Do most of these women understand their breast cancer risk? I believe they do.”

My experience is that many women have their decisions informed by hearing stories of near misses, or life ending misses and, especially if they no longer biologically need their breasts (eg no longer breastfeeding) they feel the theoretical risk of an extra surgery is worth the trade off of a theoretical non-risk of a cancer occurrence in the other breast.

The other thing I see informing women’s decisions is access to care. In my rural area, most people have to commute ~5hrs to our major cancer centre (each way). And our one (regional) MRI is in high demand, and the local CT is not without its own exposure concerns. If you are lucky, you can get right into the local MRI but if not and you have an urgent need, it’s that same 5hr round trip. At this time of year, I would argue that the theoretical risk of the 10hr round trip over 4 mountain passes is probably comparable to the theoretical risk of CPM rather than unilateral mastectomy.

The other amazing thing I see in some of these conversations, is women letting go of a particular image of femininity and embracing their body, even with a new breast situation (CPM, unilateral, reconstructed, or not). There’s something really incredible about that.

Thanks again!

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Kelly Pender

Thanks for you comments Colleen. I especially appreciate the point about access to care. Some of these medical articles just cite the safety of screening over CPM and never address the very real practicalities of getting to and from (and paying for) biannual (or more) screening tests. I am also glad to hear that this argument resonates with someone who’s actually working with breast cancer patients. Thank you!
-Kelly

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