Why Women Are Choosing Bilateral Mastectomy

Bonnie Jerome-D'Emilia, PhD, MPH, RN; Patricia D. Suplee, PhD, RNC-OB; Ian D'Emilia, MFA

Disclosures

Clin J Oncol Nurs. 2015;19(6):764-768. 

In This Article

Evidence-based Practice

In the 1980s, the results of a large randomized clinical trial of surgical treatment alternatives for early-stage breast cancer found that women who were treated conservatively with a lumpectomy followed by a course of radiation therapy were as likely to survive the disease as were women who had a mastectomy (Fisher et al., 1985). The lumpectomy was significantly less disfiguring, and a woman did not need to consider plastic surgery or a prosthetic device to once again look "normal" in clothes. However, studies found that physicians did not rush to change their practices after the trial results were made public (Mac Bride et al., 2013). As a result, laws were passed in at least 20 states requiring physicians to inform patients of the available surgical options, and women were encouraged to choose their treatment, or at least to play an active role in treatment decision making (Katz & Hawley, 2007). Unlike most diseases, breast cancer, particularly at an early stage, is considered to be a preference-sensitive condition in that two or more medically justified treatment options exist: lumpectomy followed by radiation therapy or mastectomy (Wennberg, 2002).

The choice to remove both breasts following a cancer diagnosis in one breast has been seen primarily in younger, more educated, insured, and primarily Caucasian women (Pesce et al., 2014; Tracy, Rosenberg, Dominici, & Partridge, 2013). Even women diagnosed with ductal carcinoma in situ, a form of precancer, have been making the decision to remove both breasts (Tuttle et al., 2009). Although women with BRCA mutations have been found to choose this prophylactic surgery as well, most of the women making this choice do not face the increased risk that comes with known genetic mutations. A woman with a BRCA mutation who is diagnosed with a first breast cancer between age 25 years and age 54 years has an 18% 10-year cumulative risk of contralateral breast cancer (Reiner et al., 2013). Removing the unaffected breast reduces this risk by as much as 97%, and for these women, a contralateral mastectomy is considered to be an acceptable risk-reduction strategy (National Comprehensive Cancer Network, 2015b). For a woman who does not carry a genetic mutation and has no family history of breast cancer, the risk of contralateral breast cancer was found to be about 5% (Reiner et al., 2013). In addition, the rate of contralateral breast cancer has been declining in recent years because of the increasing use of adjuvant treatments (Morrow, 2011; Nichols, Berrington de González, Lacey, Rosenberg, & Anderson, 2011).

In large national studies, researchers have suggested that women may be overestimating their risk of breast cancer recurrence in the other breast and the resultant risk of death related to a second breast cancer. However, in reality, the spread of the breast cancer to other organs, such as the brain, is more likely to result in a death from breast cancer (Balch & Jacobs, 2009). Table 1 describes the types of early-stage breast cancer, and Table 2 includes the recommended clinical guidelines for the treatment of breast cancer. Given the current evidence, removal of the unaffected breast after a diagnosis of unilateral breast cancer is not medically recommended, regardless of stage, for women who do not carry the BRCA1 or BRCA2 mutation.

Asking Women Why

Two of the current authors, both of whom are nursing researchers interested in women's decision making about breast cancer screening, became curious as to why women were—and are—choosing to remove both of their breasts after a few women close to them opted for this decision. Had these women panicked and rushed into a radical and medically unnecessary decision, or had they made the choice based on what they thought was best? Had they scoured the Internet for evidence or responded to emotional messages from friends and relatives who had faced a breast cancer recurrence after less radical surgery? Had they received information from their physicians that was comprehensive enough for them to make an informed decision based on their diagnosis and chance of recurrence? These are some of the questions that drove the current authors' research into women's decision making.

Peace of Mind

The current authors' qualitative study includes the results of interviews with 23 women from New Jersey and eastern Pennsylvania who had chosen bilateral mastectomies after being diagnosed with unilateral breast cancer (Jerome-D'Emilia, Suplee, Boiler, & D'Emilia, 2015). The women, ranging in age from 30–68 years, spoke of their desire to avoid the follow-up surveillance of the other breast as a major reason for choosing to remove both breasts. One woman stated, "I don't want to 'do cancer' every three to six months." The current authors found that the women who underwent a bilateral mastectomy had chosen the surgery not because they assumed it was a cure; conversely, all but one of the women in the study expressed fear that the disease would eventually come back in a different part of their body and, at that time, their options would be quite limited. Another woman explained her choice in this way: "The only thing [the doctors] gave me as a sense of peace was that I can do whatever is within my control…. [A cancer recurrence somewhere else in the body] is out of my hands, … and I won't have regrets" (Jerome-D'Emilia et al., 2015).

What are Physicians Telling Women?

Most surprising in the current study was the variability in the women's recollections of the information they were given by their physicians. Nine women reported that their doctors not only recommended, but also encouraged removal of the unaffected breast. Several women recalled that their physicians gave statistics on recurrence; however, these statistics varied widely and seldom reflected current evidence. Other physicians, as reported by these women, provided personal accounts of what they would do, such as, "If you were my wife, I would tell you to remove both breasts." None of the women discussed being advised of the potential risks of removing both breasts, described by Khan (2011) as a possible increase in postoperative complications or a decreased satisfaction with sexual pleasure or body image. One woman reported that she asked her surgeon if the "operation would be more difficult." Her surgeon replied, "Only for me, not for you." If researchers are concerned that women are basing their choice of surgical procedure on faulty information, then they must consider the fact that some of this information may be coming from physicians. Table 3 describes the screening guidelines for early detection of breast cancer, including the follow-up surveillance for women who have been diagnosed and treated for invasive breast cancer.

In an attempt to curtail the number of bilateral mastectomies being performed on women without medical indication, Katz and Morrow (2013) suggested that perhaps insurance companies should not reimburse surgeons for bilateral procedures as a way to discourage women from making this choice. This suggestion seems to be a coercive and unnecessary infringement of a woman's right to make an informed choice, and the last thing the current authors want to see is another effort to limit a woman's right to choose what is right for her life and her body. The current authors' study suggests that the use of evidence-based medicine when explaining the risks of recurrence and prognosis to a woman newly diagnosed with breast cancer would guide her to make an informed decision in this life-altering treatment option.

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