In just seven years, the rates of women who received prophylactic bilateral mastectomies after a diagnosis of unilateral breast cancer skyrocketed—increasing from 9% in 2003 to 24% in 2010. The current evidence does not justify bilateral mastectomy for women who do not have a BRCA1 or BRCA2 mutation. So what’s causing the increase in unnecessary surgery?

In their article in the December 2015 issue of the Clinical Journal of Oncology Nursing, Jerome-D’Emilia, Suplee, and D’Emilia sought to answer that question. To understand the decision-making process, they conducted qualitative interviews with women who made the choice to have bilateral mastectomy. The history of evidence-based support, as well as nursing implications, were discussed.

State of the Evidence for Mastectomy

The current increase in bilateral mastectomy has evolved significantly since the 1980s, when large, randomized trials found that lumpectomy plus radiation was just as effective as mastectomy for women with early-stage breast cancer. Physicians were slow to adapt the new recommendation, however, and Jerome-D’Emilia et al. reported that laws were passed in at least 20 states requiring physicians to inform their patients of available surgical options and allow patients to make the final choice. Those laws and practice set the stage for today, when bilateral mastectomy may be presented as a surgical option even if it’s unnecessary given a woman’s BRCA status. 

Jerome-D’Emilia et al. noted that younger, more educated, insured, and primarily Caucasian women are more likely to choose bilateral mastectomies. Additionally, they reported that even women with only precancerous ductal carcinoma in situ are starting to opt for double mastectomy.

Without a BRCA mutation, the likelihood of developing cancer in the contralateral breast is only about 5%. With a diagnosis of breast cancer between ages 25–54 with a BRCA1 or BRCA2 mutation, the 10-year cumulative risk of contralateral breast cancer is about 18%. Double mastectomy may reduce the risk by 97% and is an acceptable risk-reduction strategy with BRCA mutations, Jerome-D’Emilia said.

However, they noted that large national studies have shown that women may overestimate their risk of developing and dying from a second contralateral breast cancer. In fact, Jerome-D’Emilia reported, women should be more concerned about their breast cancer spreading to other organs, such as the brain, which is more likely to be terminal. 

Decision-Making Process for Bilateral Mastectomy

Jerome-D’Emilia et al. interviewed 23 women aged 30–68 years who had chosen bilateral mastectomies after being diagnosed with unilateral breast cancer, to better understand their decision-making process. Although 19 of the women had been screened for BRCA status, none knew the result before electing to receive bilateral mastectomy. Based on their interview responses, their rationale for the decision was mostly to ensure a peace of mind.

The women reported the desire to avoid follow-up surveillance of the other breast as a major reason for a bilateral mastectomy. They did not assume it was a cure, but rather they expected the disease to recur later and that their options would be limited, so they wished to do everything they could now while they had more control. “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,” one woman said.

The authors also found that the women reported feeling as though their physicians encouraged them to select bilateral mastectomies, including providing personal accounts such as, “If you were my wife, I would tell you to remove both breasts.” 

Finally, Jerome-D’Emilia et al. noted that the women were not told about potential risks of bilateral mastectomy, such as possible increase in postoperative complications or decreased satisfaction with sexuality or body image.

Oncology Nursing Implications

As part of their role in patient education, oncology nurses need to ensure that women understand their options for breast cancer treatment, including the indications and ramifications for bilateral mastectomy. Jerome-D’Emilia et al. suggested using evidence-based medicine when explaining treatment options, prognosis, and risk of recurrence to help guide women to make informed decisions about life-altering treatments.

For more information on women’s experiences with bilateral mastectomy, refer to the full article by Jerome-D’Emilia et al.

Five-Minute In-Service is a monthly feature that offers readers a concise recap of full-length articles published in the Clinical Journal of Oncology Nursing (CJON) or Oncology Nursing Forum. This edition summarizes “Why Women Are Choosing Bilateral Mastectomy,” by Bonnie Jerome-D’Emilia, PhD, MPH, RN, Patricia D. Suplee, PhD, RNC-OB, and Ian D’Emilia, MFA, which was featured in the December 2015 issue of CJON. Questions regarding the information presented in this Five-Minute In-Service should be directed to the CJON editor at Photocopying of this article for educational purposes and group discussion is permitted.