More than 16,000 mastectomies were performed in England and Wales in 2009-2010, mine among them. Due to the size of the tumor, the surgeon explained, it would not be possible to perform “breast conserving therapy” (BCT)—more often more referred to in the U.S. by the awkward Latinate term lumpectomy, and in the UK as a “wide local excision”—and preserve (her words) “a cosmetically acceptable breast.” Nevertheless, my own data point is part of a purported trend of escalating mastectomy rates, one that has incited a kind of moral panic among researchers charting these statistics and, more pointedly, media outlets reporting on these findings. “Why are more women having mastectomies?” a 2013 headline in the British tabloid The Independent demanded. “In some ways it’s astonishing that this is where we are with breast cancer treatment in the 21st century,” the author opines. “How has something as crude as chopping off body parts been relatively normalized?”
If this “crude” and barbaric practice offends sensibilities, it surely saves lives. Yet not always, and not to the extent that we may have been made to believe. Several studies have shown no appreciable difference in the ten-year survival rates of women who underwent mastectomies for early-stage breast cancer versus those who had lumpectomies, even reporting “the unanticipated finding that patients treated with mastectomy had a significantly lower overall survival and breast cancer-specific survival than women who underwent BCT, even after adjusting for tumor grade, proportion of positive nodes, race, SES, tumor size, age of diagnosis, and year of diagnosis” (Hwang et. al. 1409). Such statistics have been wielded as evidence in favor of BCT by those, like health policy analyst Diana Zukerman, President of the National Center for Health Research, who routinely issues statements like this one: “If mastectomy is not medically necessary, it is a bad choice since cancer patients who undergo mastectomy don’t live as long as lumpectomy patients and additionally, are more likely to commit suicide”—implying, irresponsibly, a kind of causation that there is no way to claim.
I bristle at the moralistic dismissal of mastectomy as a “bad choice”—or as an “unhealthy” one or “unwise” one, per the language American Board of Internal Medicine’s “Choosing Wisely” campaign, which saw the American Society of Breast Surgeons (ASBrS) issue a list of recommendations, including caution against contralateral prophylactic mastectomy (CPM)—amputation of both breasts as a preventative measure—for patients diagnosed with cancer in only one breast. The increased prevalence of CPM in particular has been the subject of significant study and discussion; in 2010, for example, a cohort analysis published in the Journal of Clinical Oncology reported a decrease in unilateral mastectomies in the United States between 2000 and 2006, but an increase in contralateral prophylactic mastectomies (Habermann et. al.). In 2015, a study out of Vanderbilt University reviewed data from the National Cancer Data Base (NCDB) on over 1.2 million patients and found that rates of CPM among women diagnosed with early-stage unilateral breast cancer had risen from 2% to 11% between 1998 and 2011 (Kummerow et. al), while a 2017 study published in JAMA Surgery further observed that the rates of increase in CPM among this demographic varied significantly by state (Nash et. al.).
Media outlets like Fox News and CNN click-bait reporting on rise in CPM, citing declarations like the SBrS consensus statement published in Annals of Surgical Oncology in 2010: “CPM should be discouraged for an average-risk woman with unilateral breast cancer”—conveniently omitting the qualifications expressed in the following lines: “However, patient’s values, goals, and preferences should be included to optimize shared decision making when discussing CPM. The final decision whether or not to proceed with CPM is a result of the balance between benefits and risks of CPM and patient preference” (Boughey et. al. 3100).
When it comes to “choosing wisely,” it is necessary to ask: who is doing the choosing, and under what circumstances? Moreover, is “wisely” always the only admissible, ethical way to choose?
The ASBrS recommendations understandably seek to guard against the routinization of a surgery that may have little measurable benefit, if what is being measured is statistical significance in ten-year survival rates. If mastectomy decisions are physician-driven—if they are determined by a surgeon’s coercion, at worst, or misunderstanding of relative benefits of the procedure, at best—then we can identify a clear lack of informed consent. But what happens when patients are informed, and still make the “bad choice” that people like Zukerman deride?
In 2017, researchers at Memorial Sloan Kettering Cancer Center, writing in the Annals of Internal Medicine, answer their article’s titular question—“Why Are There So Many Mastectomies in the United States?”—by declaring the election of mastectomy over breast conserving surgical intervention “a patient-driven trend that is most pronounced younger, educated, and well-insured women,” one that “reflects fear of recurrence and in some cases misunderstanding of future cancer risks” (Mamtani and Morrow 6.1).
Misunderstanding is clearly a problematic basis for health decision-making. But is fear?
The findings above echo the conclusions cancer epidemiologist Shoshanna Rosenberg and her colleagues at the Dana-Farber Cancer Institute drew in a 2013 examination of the motivations of patients aged 40 or younger who opted for CPM in the wake of unilateral early-stage breast cancer diagnoses. Nearly all of the 123 women surveyed cited desires to reduce their risk of developing a second cancer and/or dying from the disease as factors influencing this decision. While Rosenberg’s study did find that some women—namely, those without known genetic mutations—overestimated their risk for developing a second cancer, crucially, nearly all women named the desire to improve survival odds as a motivation, even as most of them simultaneously expressed their understanding that prophylactic mastectomy was statistically unlikely to affect survival—a disconnect between knowledge and behavior, the study asserts, that “suggests some degree of cognitive dissonance,” and indicates that “anxiety and fear of recurrence probably influence women during the decision-making process” (Rosenberg et. al. 378).
Reports on Rosenberg’s findings in the popular press latched on to this fear-based explanatory framework: “Unfounded Fears Prompt Prophylactic Mastectomy,” declared a headline in Clinical Advisor; “Young Women with Breast Cancer Overestimate the Benefit of Having Second Breast Removed,” Science Daily announced. These headlines paint these patients as irrational actors, hystericized by “unfounded fears” into unnecessary and extreme treatment.
And this is the general tenor of many efforts to “understand” mastectomy decision-making: fears unfounded, reasoning flawed, conclusions false, decisions bad. It is not acceptable, it seems, to decide that any risk is unacceptable—this, despite the fact that we routinely engage in preventative behaviors against outcomes that are statistically unlikely to occur.
In her interview with The Independent, Rosenberg described the trend toward elective prophylactic mastectomy as “particularly concerning in young women”: “Our study suggests the peace-of-mind factor is huge,” Rosenberg continued; “Even though maybe they have only a very small chance of developing breast cancer in the healthy breast, for some women, any risk is too much.” Rosenberg’s assessment of her subjects’ reasoning here seems apt: women who understood and acknowledged the statistically-small risk but nevertheless elected not to assume it were motivated not by ignorance or misunderstanding, but by an effort to improve mental well-being. As Rosenberg’s own data demonstrates, it wasn’t the case that these patients—women who were already undergoing the physical and psychological trauma of surgery for breast cancer—simply hadn’t performed a cost-benefit analysis, but rather, that in so doing, they had arrived at a different conclusion than the researchers clearly thought they ought to: one that prized “peace of mind” over the conservation of an anxiety-inducing breast. The removal of the breast, in such cases, is not about the erasure of calculable risk, but the erasure of feelings—anxiety, vulnerability—that are, at mildest, unpleasant, and, at worst, psychologically devastating. Moreover, they are feelings persistently coded feminine, juxtaposed with the patriarchal, often paternalistic hegemony of reason.
“Each woman should make the decision that is best for her, based on information, not on fear,” Zukerman (again) asserts in 2017 post on the Our Bodies, Ourselves blog.
A word or two for fear.
Would it be possible to acknowledge that a decision is partially or even fully fear-motivated without dismissing it as ipso facto a “wrong” decision? After all, we regularly—perhaps even primarily—make decisions that are motivated by emotion rather than by calculated analysis. And we barely bat an eye at elective surgeries like breast augmentation, procedures elected for reasons that are entirely psychological—for the reason surgical body modification may make one feel better: happier, more confident, more attractive—yet we seem well on our way to a full-blown moral panic surrounding elective mastectomy to feel better about risk, even if we already intellectually “know better.”
But of course, seeing elective mastectomy as a legitimate option is a hard sell in a medical complex bent on breast conservation, in a breast cancer culture rife with slogans like “Save the Tatas.” The imperative is to conserve breasts, to save them, as if they were a scarce commodity or an endangered species.
Some mastectomies may not be necessary.
Boughey, Judy C., et al. “Contralateral Prophylactic Mastectomy (CPM) Consensus Statement from the American Society of Breast Surgeons: Data on CPM Outcomes and Risks.” Annals of Surgical Oncology, vol. 23, no. 10, Oct. 2016, pp. 3100–05.
Habermann, Elizabeth B., et al. “Are Mastectomy Rates Really Increasing in the United States?” Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology, vol. 28, no. 21, July 2010, pp. 3437–41.
Hwang, E. Shelley. “Survival after Lumpectomy and Mastectomy for Early Stage Invasive Breast Cancer: The Effect of Age and Hormone Receptor Status.” Cancer, vol. 119, no. 7, Apr. 2013, pp. 1402–11.
Kummerow, Kristy L., et al. “Nationwide Trends in Mastectomy for Early-Stage Breast Cancer.” JAMA Surgery, vol. 150, no. 1, Jan. 2015, pp. 9–16.
Mamtani, Anita, and Monica Morrow. “Why Are There So Many Mastectomies in the United States?” Annual Review of Medicine, vol. 68, Jan. 2017, pp. 229–41.
Nash, Rebecca, et al. “State Variation in the Receipt of a Contralateral Prophylactic Mastectomy Among Women Who Received a Diagnosis of Invasive Unilateral Early-Stage Breast Cancer in the United States, 2004-2012.” JAMA Surgery, vol. 152, no. 7, July 2017, pp. 648-657.
Rosenberg, Shoshana M., et al. “Perceptions, Knowledge, and Satisfaction with Contralateral Prophylactic Mastectomy Among Young Women With Breast Cancer: A Cross-Sectional Survey.” Annals of Internal Medicine, vol. 159, no. 6, Sept. 2013, pp. 373-381.