Prophylactic Mastectomy: A Growing Choice Among U.S. Women

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By Debra Wood, RN, contributor 

May 21, 2013 - As soon as Angelina Jolie’s op-ed piece, describing her decision to undergo a prophylactic mastectomy, ran in the New York Times, the phones started ringing at the Hoffberger Breast Center at Mercy Medical Center in Baltimore, and likely at other breast cancer centers across the country. 

Marsha Oakley says prophylactic mastectomy is an individual decision.
Marsha T. Oakley, RN, BSN, said that prophylactic mastectomy is an individual decision.

“We have been inundated, and it’s a good conversation to have,” said Marsha T. Oakley, RN, BSN, nursing coordinator at the Hoffberger Breast Center. 

A two-time breast cancer survivor, Oakley made the difficult decision in 2009 to remove her healthy breast at the same time she underwent a mastectomy to remove the newly diagnosed cancerous breast. She suffered through chemotherapy after her 1986 lumpectomy. 

“It took me about 12 hours to say, ‘I cannot do this again,’” Oakley said. “[Prophylactic mastectomy] was the best thing I did.”

American women are more frequently choosing prophylactic mastectomy, despite multiple clinical studies finding no survival advantage associated with a contralateral prophylactic mastectomy, including a 2011 University of Texas MD Anderson Cancer Center study in the Journal of Clinical Oncology

The National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines in Oncology™ for Breast Cancer discourages prophylactic mastectomy in women except for those considered high risk.

A Swiss study, reported in the European Journal of Surgical Oncology in April 2012, did not observe a similar increase in contralateral prophylactic mastectomy in Europe. The researchers hypothesize that different medico-social and cultural factors contribute, including public perceptions about breast cancer and attitudes toward plastic surgery. Additionally, a 2008 international study found the highest percentage of high-risk women undergoing prophylactic mastectomy were in the United States, where 36 percent of them choose the surgery.  

Laura L. Kruper, MD, an assistant professor and surgeon in the division of general oncologic surgery at City of Hope in Duarte, Calif., reported at the 2012 Breast Cancer Symposium her findings that most women choose a contralateral mastectomy to avoid the risk of recurrence. She found they were younger, Caucasian and with higher education levels than women who decided against such surgery. 

The MD Anderson researchers concluded that a reduction in suffering and repeat breast cancer treatment associated with prophylactic mastectomy motivates women more than a possible survival advantage. 

“The reason they do this is they don’t want to have repeat procedures done,” said Oakley, who routinely counsels breast cancer patients, including those considering prophylactic mastectomy. “It’s a horrible decision to make.”

Oakley said she finds many of the women opting for prophylactic mastectomy witnessed the death of a mother, sister or other relative with the disease and do not want their children to experience the same thing. 

“No matter what I say, you cannot get it out of their minds,” Oakley said. 

Additionally, better reconstructive procedures are available today than in years past. 

Some evidence supports that women who have undergone prophylactic mastectomy were pleased they did and would recommend a similar plan of care to other women, including a study from the University of Pittsburgh, reported in a May 2013 American Journal of Clinical Oncology article. Patients reported long-term satisfaction with their surgery and that fear of cancer recurrence and the opinions of other people, such as partners and friends, influenced the participating women’s decisions. 

Joanne Kelly chose prophylactic mastectomy due to gene mutation that can cause breast cancer.
Joanne Kelly, RN, BSN, OCN, who carries the BRCA1 gene mutation, called prophylactic mastectomy a difficult decision but one she is glad she made.

Oakley said that her being a nurse and knowing all she did about breast cancer helped with her decision. So did Joanne Kelly, RN, BSN, OCN, a volunteer outreach coordinator in the St. Louis chapter of Facing Our Risk of Cancer Empowered (FORCE).

Kelly learned at age 32, as a mother of two children, that she carried the BRCA1 mutation, thus putting her at greater risk of developing breast cancer. She weighed all of the options before deciding on prophylactic mastectomy and reconstructive surgery, which has been shown to reduce the chance of developing breast cancer and to increase life expectancy. 

“I knew the cards were stacked against me, and felt the best way for me was to have the prophylactic,” Kelly said “I didn’t want to take the risk of surveillance and catching cancer even at an early stage.”

Kelly does not regret her decision but acknowledges it is not always easy, particularly with society’s fixation on breasts.

“You have to wrap your brain around your new reality,” Kelly said. “I still have bad days where I feel ugly or not as sexy.”

The National Cancer Institute reports that some women having a prophylactic mastectomy experience anxiety, depression and concerns about body image. 

Other options for women with the BRCA1 mutation include annual mammogram or magnetic resonance imaging surveillance or a selective estrogen receptor modulator, such as tamoxifen. 

“It’s a good drug, but it has side effects,” Oakley said. “It needs close, watchful follow-up.”

A May 2013 study from Norway found survival rates of BRCA1 mutation carriers participating in an MRI-based screening program less than expected, and concluded that reducing breast cancer mortality with such surveillance remains to be proven. 

The Jolie announcement has more women thinking about their breast-cancer risk and considering genetic testing. 

“I give this woman credit,” Oakley said. “The conversation that has come out of this has been great.” 

Kelly also called the increased interest a good thing and expects it will spur women to explore their options and, hopefully, speak with a genetic counselor. But both nurses caution women to think through how they will handle the results and discuss with their health care team the options if they carry the mutation. 

“It’s, ultimately, a personal decision,” Kelly said. “We are removing healthy parts, and that’s what makes it interesting.”

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