Kelly Pender,Daleela Dodge,Jessica M Collins
Preserving choice in breast cancer treatment: A different perspective on contralateral prophylactic mastectomy
breast cancer,breast cancer screening,breast reconstruction,choice,contralateral prophylactic mastectomy
Contralateral prophylactic mastectomy is the removal of both breasts when only one is affected by cancer. Rates of this controversial cancer treatment have been increasing since the late 1990s, even among women who do not have the kind of family history or known genetic mutation that would put them at high-risk for another breast cancer. Citing contralateral prophylactic mastectomy’s lack of oncologic benefit and increased risk of surgical complications, the American Society of Breast Surgeons discourages contralateral prophylactic mastectomy for average-risk women with unilateral cancer, as does most of the medical literature on this topic. Within this literature, desire for contralateral prophylactic mastectomy is often painted as the product of an emotional overreaction to a cancer diagnosis and misunderstanding of breast cancer risk. Drawing on the personal experience of a breast cancer survivor, as well as relevant medical literature on breast cancer screening and surgery, this article offers a different perspective on the ongoing popularity of contralateral prophylactic mastectomy, one that focuses on practical experiences and logical deliberations about those experiences. Specifically, it calls attention to two features of the contralateral prophylactic mastectomy decision-making situation that have been inadequately covered in the medical literature: (1) the way that breast cancer screening after a breast cancer diagnosis can become a kind of radiological overtreatment, even for “average-risk” women; and (2) how desire for bodily symmetry after breast cancer, which can best be achieved through bilateral reconstruction or no reconstruction, drives interest in contralateral prophylactic mastectomy. The goal of this article is not to suggest that all women who want contralateral prophylactic mastectomy should have the surgery. In some cases, it is not advisable. But many “average-risk” women with unilateral cancer have good reasons for wanting contralateral prophylactic mastectomy, and we believe their right to choose it should be protected.
Preserving choice in breast cancer treatment: A different perspective on contralateral prophylactic mastectomy

Contralateral prophylactic mastectomy is the removal of both breasts when only one is affected by cancer. Rates of this controversial cancer treatment have been increasing since the late 1990s, even among women who do not have the kind of family history or known genetic mutation that would put them at high-risk for another breast cancer. Citing contralateral prophylactic mastectomy’s lack of oncologic benefit and increased risk of surgical complications, the American Society of Breast Surgeons discourages contralateral prophylactic mastectomy for average-risk women with unilateral cancer, as does most of the medical literature on this topic. Within this literature, desire for contralateral prophylactic mastectomy is often painted as the product of an emotional overreaction to a cancer diagnosis and misunderstanding of breast cancer risk. Drawing on the personal experience of a breast cancer survivor, as well as relevant medical literature on breast cancer screening and surgery, this article offers a different perspective on the ongoing popularity of contralateral prophylactic mastectomy, one that focuses on practical experiences and logical deliberations about those experiences. Specifically, it calls attention to two features of the contralateral prophylactic mastectomy decision-making situation that have been inadequately covered in the medical literature: (1) the way that breast cancer screening after a breast cancer diagnosis can become a kind of radiological overtreatment, even for “average-risk” women; and (2) how desire for bodily symmetry after breast cancer, which can best be achieved through bilateral reconstruction or no reconstruction, drives interest in contralateral prophylactic mastectomy. The goal of this article is not to suggest that all women who want contralateral prophylactic mastectomy should have the surgery. In some cases, it is not advisable. But many “average-risk” women with unilateral cancer have good reasons for wanting contralateral prophylactic mastectomy, and we believe their right to choose it should be protected.

Contralateral prophylactic mastectomy (CPM) is the removal of both breasts when only one is affected by cancer. Since the late 1990s, rates of this controversial treatment have been on the rise, as women with cancer in one breast (particularly young women) increasingly want to have both breasts removed, even when they are candidates for breast-conserving surgery (BCS) and do not have the kind of family history or known genetic mutation that would put them in a high-risk category. Within the medical literature on CPM, surgeons have expressed strong opposition to increased use of the procedure, repeatedly characterizing it as a form of overtreatment and citing its lack of oncologic benefit as the main reason to prefer BCSs like lumpectomy and unilateral mastectomy. This opposition has not only been echoed in the mainstream media, where CPM is regularly portrayed as the “wrong approach” to breast cancer, but also formalized in the American Society of Breast Surgeons’ (ASBrS) 2016 CPM consensus statement, which advises that “CPM should be discouraged for an average-risk woman with unilateral breast cancer.” A consensus statement companion document helps to contextualize the ASBrS’s position on CPM, explaining that the group sees “fear-based decision-making” and the “Jolie Effect” as the two main “patient perspective” factors behind this surgical trend. As a breast cancer survivor (Kelly Pender), an academic breast surgeon (Daleela Dodge), and a general surgery resident (Jessica M. Collins), our goal here is to offer a different patient perspective on CPM, one that focuses more on the practicalities of breast cancer screening, diagnostics, and treatment than emotions and celebrity influence. All of us know, of course, that emotions impact breast cancer treatment decisions. One of us has experienced those emotions firsthand, and the other two of us have seen their effects on countless patients who, faced with a breast cancer diagnosis, must make a choice about surgical treatment. But we have also experienced and seen the logical deliberations and practical considerations at work in patients’ decision-making processes, especially centered around the issues of breast cancer screening and bodily symmetry. These issues are often addressed in the medical literature on CPM, but typically they are framed as “psychosocial” aspects of cancer and viewed as too subjective to compete with the objective facts of evidence-based medicine, namely, that CPM provides little oncologic benefit for average-risk women and introduces the risk of additional surgical complications. Facts based on evidence-based medicine are important but so are patients’ practical experiences and logical deliberations about those experiences. In what follows, we try to shine a light on those experiences and deliberations by turning to Kelly’s story as a breast cancer patient, as well as information and insights from the relevant medical literature on breast cancer screening and reconstruction. Importantly, our goal here is not to suggest that CPM is the right choice for any patient who wants it. In many cases, surgeons have very good reasons for advising against this treatment. But it’s also true that in many cases patients have very good reasons for wanting CPM. Our goal, then, is to make an argument for the preservation of choice for those patients in this challenging and nuanced shared decision-making situation.

To tell my story, I have to also tell my mother’s, which begins 1975, when she was diagnosed with breast cancer. I was very young at this time, so I have no memories of this event. All I know is that she found a lump while in the shower and went to see her doctor, who assured her that it was probably benign since she was young and had no family history of breast cancer. To be safe, though, he wanted to do a biopsy. Histological testing done while she was under anesthesia revealed that the lump was cancer, and—as was the practice in 1975—my mother’s surgeon apprised my father of this result and got his permission to perform a one-step unilateral mastectomy, which was the standard of care at this time. Thus, my mother went to sleep thinking that she had a benign lump and woke up with only one breast. She had no choice about what kind of surgery she had, who performed it, or when. She received no other form of treatment and lived ten cancer-free years before she experienced a recurrence in 1986. After that, she endured 3 years of chemotherapy and radiation and then died in 1989. Fast forward to 2015, when, at the age of forty, I was diagnosed with bilateral ductal carcinoma in situ (DCIS). This diagnosis came after 8 years of on-again, off-again breast cancer screening. I started screening after an appointment with a genetic counselor for recurrent miscarriages inadvertently turned into a session about cancer risk. My mother was the only person in her large family to have breast cancer, but her young age at diagnosis was a red flag for the genetic counselor, and so she urged me to embark on genetic testing and enhanced breast cancer screening. For a while I ignored the genetic testing recommendation, but after my first breast cancer scare—which came with my very first round of screening—I decided to get tested for the common mutations linked to breast cancer. The testing came back negative, and so I continued with screening for as long as I could endure it. But I had dense breasts, and every bi-annual exam (either a mammogram or MRI) led to some kind of follow-up testing, which was stressful, life-interrupting, and expensive. So, I let it go. I stopped screening for several years while I had more miscarriages, raised my one son, and worked on getting tenure as an English professor. But as some of the chaos of those years began to fade away, my fears about breast cancer grew stronger. I was several years past my mother’s age at diagnosis, and this worried me. So, I finally relented and took the first step back into a regular screening regimen—a digital mammogram, which revealed calcifications in both breasts. The on-site radiologist assigned the images a BI-RADS 3 (“probably benign”) designation and told me to come back in 3 months for follow-up. Within a few days, though, a different radiologist had reviewed the images, re-assigned them as a BI-RADS 4 (“suspicious for malignancy”), and called to ask me to schedule bilateral stereotactic biopsies. Those biopsies revealed high-grade estrogen receptor-positive and progesterone receptor-positive (ER/PR+) DCIS in both breasts. Within days I was in my breast surgeon’s office, deciding on a treatment plan. The area of DCIS in the left breast was fairly extensive, so a lumpectomy was not a good option there. But in the right breast, the involved area was very small—“tiny,” in fact—and my surgeon was confident she could excise it successfully, leaving me with a very good cosmetic result. This assessment left me with two options: (1) unilateral left mastectomy and a right lumpectomy with radiation therapy (and maybe tamoxifen) or (2) a bilateral mastectomy. I was leaning toward the latter choice, a move my surgeon supported, even though some may have seen her support as encouraging surgical overtreatment. Mastectomy for DCIS is controversial, and I can see why. But what my surgeon could see was the toll that eight years of enhanced breast cancer screening had taken on me. I did not want to have another MRI, ultrasound, mammogram, or breast biopsy—ever. I also did not want the potential side effects of the radiation therapy that would have followed a lumpectomy. And finally, I did not want an asymmetrical appearance. I grew up with a one-breasted mother who lived life lopsided and to tied her bra and breast form. A unilateral mastectomy followed by reconstruction and lumpectomy would have provided me with a better cosmetic outcome, but still I knew the results would be breasts that did not match. So, bilateral mastectomy was my choice.

Technically speaking, my bilateral mastectomy does not count as CPM because I had disease in both breasts, even if the lesion in my right breast was “tiny.” And further, my indeterminate risk status—a family history of premenopausal breast cancer but no known genetic mutation—means that I was not (and am not) at average risk for breast cancer. But it’s precisely because of my indeterminate status that my story is relevant to this controversy. My family history of breast cancer made me eligible for an enhanced screening regimen of alternating MRI or mammogram every 6 months. And I tried to adhere to that regimen, but the truth is that I experienced it as an unsustainable form of radiological overtreatment. My breasts were dense, and that made mammograms less sensitive. In every round of screening, it seemed, radiologists found a suspicious area to watch or mass to biopsy. Everything turned out benign (until it did not), but the process of workup and biopsies takes time. In a best-case scenario, maybe only a few weeks elapse between identifying a suspicious lesion and follow-up imaging or a negative pathology report. But in the case of something like a BI-RADS 3 “probably benign” designation on a mammogram or MRI, a patient can wait up to two or three years to get the all clear on a breast finding. BI-RADS 3 designations are assigned when radiologists believe that a lesion has no more than a 2% chance of malignancy and that it will not change in a suspicious way over time. The follow-up protocol is not a biopsy but rather a mammogram or MRI every 3 or 6 months until a “definitive disposition” is reached. In some imaging facilities, up to 25% of breast MRIs receive this uncertain designation, putting many women in a kind of extended “wait and watch” limbo that has them living from one scan to the next. Understandably, some would point out that the ASBrS consensus statement advises against CPM for “average-risk” women, not “high-risk” women—and, further, that women in the “average-risk” category do not typically participate in enhanced breast cancer screening regimens and thus do not have breast MRIs, an imaging modality known for a higher rate of false positive results due to its increased sensitivity but also lower specificity. Presumably, then, women in the “average-risk” category would not be subject to the kind of radiological overtreatment that made me want bilateral surgery. But this is not necessarily the case. For the ASBrS, “average-risk” refers women who have no significant family history of breast cancer, no known genetic mutation, and no history of chest mantle radiation, while “high-risk” refers to those who do have one of these risk factors. But these designations are too broad. They ignore the fact that within the radiological literature, women with a personal history of breast cancer are considered intermediate-risk patients, which puts them at a 15%–20% lifetime chance of developing a new cancer. Screening recommendations for intermediate-risk women are mixed, as organizations such as the American Cancer Society, Breastcancer.org, and the National Comprehensive Cancer Network do not agree on whether MRI should be added to routine mammography for this group. Research in radiology has responded to this disagreement by trying to provide additional MRI guidelines for women with a personal history of breast cancer. Mainly this has meant itemizing the specific disease and demographic criteria that make someone a candidate for the test. A 2014 study in the American Journal of Roentgenology, for instance, suggests that personal history alone warrants annual MRI, while another, published in 2018 in the Journal of the American College of Radiology, recommends MRI for women with a personal history of breast cancer who also have dense breast tissue or who were diagnosed before age 50. This 2018 study further suggests that MRI should be considered for anyone else with a personal history of breast cancer, lobular carcinoma in situ, or atypia, especially if other risk factors are present. Similarly, a 2018 article in Ultrasonography recommends that annual MRI be considered for anyone with a personal history of breast cancer who has an increased risk for an interval second cancer following a negative mammogram. Criteria that raise a women’s risk of an interval cancer include being younger than 50 at time of screening, younger than 40 at time of diagnosis, having BCS without radiation, or receiving a BI-RADS density rating of “extremely dense breasts.” In addition, risk for an interval cancer can be higher if a patient has any combination of three other features—a BI-RADS density rating of “heterogeneously dense breasts,” BCS only as treatment for the index cancer, or an index cancer that was high grade and/or symptomatic at presentation). More recently, a 2020 American Journal of Roentgenology study has argued that women diagnosed before age 50 or who were diagnosed at any age and have dense breasts should be considered high risk for another breast cancer and screened accordingly with yearly MRI. This recommendation is now the official recommendation of the American College of Radiology. While these additional guidelines are not exactly consistent, they do manage to make one thing clear: many women who have been diagnosed with breast cancer and who would be deemed “average risk” by the criteria of the ASBrS consensus statement will be encouraged to undergo an enhanced breast cancer screening regimen that includes yearly MRI. Adding breast MRI as a screening option for high-risk patients in the early 2000s was a major advancement in breast cancer detection, especially for women with dense breasts since the test does not use the ionizing radiation that makes both fibroglandular tissue and malignant lesions show up as white on a mammogram. But advances in medicine rarely come without unintended ramifications. And in this case, that ramification is a kind of paradox that has largely been unacknowledged by the surgical establishment—namely, that better, more sensitive forms of breast imaging make BCSs a reasonable and desirable option for many patients while simultaneously making them an unreasonable and undesirable option for many other patients. For the former group, breast cancer screening provides the assurance they need to keep their breast(s). These patients can take solace in the fact that screening with MRI provides an excellent chance of catching any new cancer at an early, treatable stage. But for the latter group, breast cancer screening provides that assurance at the cost of creating a kind of “medicalized” existence characterized by yearly cycles of scans, callbacks, and biopsies. Choosing bilateral mastectomies is a way out of this existence; and so even if it is a form of overtreatment, it is a finite form of overtreatment and is, therefore, perceived as preferable to the potentially endless radiological overtreatment that can follow a breast cancer diagnosis. This way of thinking about breast cancer screening and surgery will never change the fact that CPM has little oncologic benefit for “average-risk” women. But yet it is a rational and—we believe—understandable approach to the treatment of breast cancer for some patients.

We also believe that it is rational and understandable for breast cancer patients to want bodily symmetry after a breast cancer diagnosis. As Kelly explained, she grew up with a mother who felt disfigured and tied to her bra and breast form because she had only one breast. Her mother had surgery in 1975, when breast reconstruction was neither available to most patients nor covered by insurance. Thankfully, today women who have a unilateral mastectomy and who elect to keep their unaffected breast can have unilateral reconstruction, making it possible to avoid the use of an external breast prosthesis. But symmetry is harder to achieve with unilateral reconstruction since the shape and size of natural breasts change over time, becoming more ptotic and often leaving women with a “lopsided” appearance. Further, women with very large or small breasts cannot achieve symmetry without plastic surgery on the unaffected breast. Thus, for some women, CPM is desirable as what one set of researchers has described as a “symmetrization procedure.” That is, these patients want both breasts removed so that the two halves of their body will match after completion of breast cancer treatment. In most cases, patients seek this symmetry by electing to have bilateral mastectomy with bilateral reconstruction. New developments in techniques for both of these procedures have improved outcome and patient satisfaction, further contributing to increased use of CPM for average-risk women. For instance, immediate reconstruction, whether implant-based or autologous, restores the breast mound at the time of mastectomy, allowing women to emerge from surgery with a body that more closely resembles its pre-mastectomy form. Similarly, nipple-sparing mastectomies (NSM) can provide women with A-C cup sizes and cancers that do not involve the nipple an opportunity to maintain critical aspects of their pre-mastectomy breasts by preserving the entire breast envelope and the nipple-areolar complex. Whereas NSM was previously used primarily for cancer-free patients at high risk of developing the disease (e.g. BRCA mutation carriers), recent studies have demonstrated its oncologic safety for early-stage and in situ cancers, making it a more popular option for some breast cancer patients. Arguments against CPM as a means for achieving better bodily symmetry often cite the chance of increased surgical complications when both breasts are reconstructed, but the literature is actually mixed on this topic, with several studies showing very similar rates of complication. Importantly, some breast cancer patients seek symmetry by forgoing reconstruction entirely and opting instead to “go flat,” that is, to have aesthetic flat closure after bilateral mastectomy. Increased interest in “going flat” has been spurred not only by its lower risk of complications, shorter recovery time, and patient desire to avoid foreign body placement but also by broadening notions of what women’s bodies should look like. A recent Washington Post article explored this aspect of the “flat movement,” drawing on the insights of surgeons and patients who cited wider social acceptance of breastless bodies as a key reason behind their support for going flat. Some surgeons remain skeptical, however, about a woman’s ability to be satisfied with a flat chest. In a 2021 study published in the Annals of Surgical Oncology, researchers reported that 22% of the women they surveyed about their choice for flat closure reported experiencing “flat denial” from their surgeons, meaning those surgeons failed to support patient choice to go breastless, sometimes by leaving extra skin behind for eventual reconstruction. While these women reported lower satisfaction with their surgical experience and outcome, patients whose physicians supported their choice to go flat reported a high degree of satisfaction. Study authors, thus, encouraged surgeons to become more aware of the negative consequences of denying flat closure to patients who want bilateral mastectomy without reconstruction. In both of these scenarios—symmetry achieved through bilateral reconstruction or symmetry achieved through no reconstruction—we want to highlight that what is at stake here is not just a woman’s appearance but also practical issues related to balance and embodiment. For women who want reconstruction, symmetrical breasts make it easier to find clothes and bras that fit appropriately. Symmetrical breasts also allow women to be more comfortable in tight or revealing clothing such as swimsuits and workout apparel. An asymmetrical chest, in contrast, can make women feel like they need to cover up their bodies, thus limiting the kinds of activities they can participate in. An asymmetrical chest can also serve as an unwelcome permanent reminder of life before breast cancer. Of course, for some women, this is whole point of choosing BCS or unilateral mastectomy—to maintain as much of their pre-cancer bodily form and experience as possible. But others do not want such reminders. In response to a New York Times article criticizing increased use of CPM, one reader wrote about the way that mismatched breasts can produce different sensations. When two halves of a body feel different, she explained, there is a “constant reminder” of her body before cancer that makes moving on to a “new normal” harder.

At age 48, I (Kelly) am 8 years past my diagnosis and content with my treatment choice and the “new normal” it has provided for me. Was it a good choice? I do not know if a choice for bilateral mastectomy is ever good. At the time, no option seemed truly good to me. I did not want unilateral mastectomy, lumpectomy, or bilateral mastectomy. But at least I had choices, not to mention a surgeon who was adept at both advising and listening. Compared to my mother’s experience of breast cancer in the mid-1970s, my experience was a shining example of the accomplishments of the women’s health movement—a movement that happened just a little too late to spare my mother from a one-step combined biopsy and mastectomy procedure that robbed her of bodily autonomy and the right to choose. Thankfully, in 2022 we do not have to worry about such egregious, sex-based infringements on patient rights. Respect for patient autonomy is now central in medical ethics, and informed consent requirements mean that physicians must fully inform patients of all their surgical options. Such progress, however, does not mean that the right to choose will remain adequately protected in all breast cancer treatment decision-making situations. Right now, the ASBrS CPM consensus statement is just advice, not policy. But it is not hard to imagine a future when this advice affects insurance coverage for CPM, making BCS or unilateral mastectomy the only option for “average-risk” women and thus becoming a kind of de facto policy. To be clear, we believe that BCS is a wonderful option for the majority of women diagnosed with breast cancer. Research has repeatedly shown high satisfaction rates for women who choose this path, and we believe surgeons should continue to promote it to patients who are good candidates for more conservative surgery. But research has also repeatedly shown high satisfaction rates for women who choose CPM. Indeed, it would seem that despite clear and concerted efforts from within the surgical establishment to discourage the use of CPM for “average-risk” women with unilateral cancer, many of these women continue to ask for, receive, and be satisfied with this treatment choice. Given the persistence of this trend, we must consider the possibility that continued arguments against CPM are based, at least in part, on an assumption that patients are simply wrong in their preference for and satisfaction with this treatment, that they are failing to “choose wisely,” as recent campaigns against surgical overtreatment have put it. To choose wisely, we believe, is to take many factors into account, not just oncologic benefit or increased risk of surgical complications but also the risks and costs of radiological overtreatment and desire for bodily symmetry, among others. And many women are doing this—they are deliberating about a range of medical facts, practical experiences, and personal preferences, and they are coming to the conclusion that CPM is the best choice for them. We believe that the freedom to make this choice should be protected. That does not mean CPM should be encouraged for “average-risk” women with unilateral breast cancer, but if it is to remain an option for this group of women (many of whom have good reasons for wanting it), then it should also not be denied.