Weighing in on Prophylactic Mastectomy

By Amy Siroky, contributor and cancer survivor

We’ve walked for days and worn pink ribbons and pledged to help, but eradicating breast cancer is still a dream. Each year approximately 200,000 people will face this diagnosis.

Some high-risk women, however, have sought out an option so dramatic they hope it will eliminate a diagnosis of breast cancer—the decision to remove their healthy breasts before cancer can appear.

What causes a woman to make this radical decision and is this controversial procedure really effective?

While prophylactic mastectomy has been performed for many years, only recently has research provided information to help women make informed decisions regarding it.

The most often-cited study, from the Mayo Clinic, "Efficacy of Bilateral Prophylactic Mastectomy in Women with a Family History of Breast Cancer," states that prophylactic mastectomy is associated with a reduction in the incidence of breast cancer by at least 90 percent.

A pretty impressive result, but a 90 percent reduction still isn’t a guarantee—surgeons can never be certain that they have removed all of a patient’s breast tissue. Any tissue left behind, no matter how microscopically small, can still develop cancer.

Given that breast cancer can still occur, why do women make this dramatic choice?

Most women cite experience with cancer in their families as a significant motivator for choosing prophylactic mastectomy.

Mary Jo Ellis Kahn, an RN, MSN, lost her mother to breast cancer at 47. Kahn was diagnosed herself at 39 with invasive ductal carcinoma. Later, her sister found out she had breast cancer as well.

At that point, Kahn decided to have a contralateral prophylactic mastectomy.

"Clearly, my mother dying young with young children affected my decision," she said. "I didn’t want to just cope like my mother had; with two young daughters myself, I wanted to survive and have a good quality of life."

Kahn’s youngest daughter was five at the time–that was 14 years ago. Now she’s hoping for the chance to see her future grandchildren.

Family history remains a strong indicator of a woman’s risk to develop breast cancer. The discovery of the breast cancer genes (BRCA1 and BRCA2) has opened another door to women. When altered, these genes show an increased risk of breast and ovarian cancer.

Cecilia Harlan, an insurance and billing agent for an Oncology medical group, had family history and the genes. Her father and aunt both had breast cancer and, in 1998, they tested positive for the mutation in BRCA2. Harlan didn’t do testing since her identical twin sister, Terri, tested positive.

"I figured I had the mutation since I have just about the same genetic make up as Terri," Harlan said.

While the subject of a prophylactic mastectomy was broached, doctors recommended they be vigilant with their monthly self-exams and annual mammograms.

Harlan and Terri followed instructions. But in the summer of 2000, Terri found a lump—stage 2B invasive ductal carcinoma.

Harlan immediately took steps towards a prophylactic mastectomy.

"I only waited to have the surgery so I could help Terri through her surgery and treatments," she said. "I had terrible nightmares during that period—not because of my decision, but because of my fear of getting cancer. Losing my breasts was not important; avoiding cancer was."

How many women with the BRCA genetic mutation are choosing prophylactic mastectomy?

Cindy Perry, RN, Ph.D., a clinical nurse specialist, is developing a study to help women make decisions after genetic testing. She said there have not been any current cumulative statistics on how many women who receive positive genetic testing results are choosing prophylactic mastectomies.

"Right now it’s hard to say the choices women are making," Perry said. "Reports in the literature, such as in the Netherlands, show that about 55 percent [of women] are choosing prophylactic mastectomy. But that seems to be much higher than in the U.S. where one recent report showed 15 percent."

Perry stated that bilateral prophylactic mastectomy and bilateral prophylactic oopherectomy are two surgical options when tested positive for BRCA1 or BRCA2.

"We still have other alternatives, including vigilant surveillance of both breasts and ovaries, and chemo-preventive therapy such as tamoxifen," she said.

These other options are also not 100 percent effective, according to Perry. While mammograms are still recommended, Perry said, "Some countries use MRIs in conjunction with mammograms for women with the BRCA mutation."

Research studies are currently underway to determine the effectiveness of MRI use in surveillance for women with the BRCA mutations.

Studies show Tamoxifen is most effective at preventing breast cancers with estrogen receptors. But because 70 percent to 80 percent of BRCA1 associated breast cancers lack estrogen receptors, Tamoxifen’s effectiveness is unknown at this time.

Controversy remains since 100 percent assurance that a patient is cancer free can never be given. Of the 639 women in the Mayo Clinic study who had prophylactic bilateral mastectomies, seven of them later developed breast cancer.

Skepticism among critics also remains since it is still unknown how many women have had their breasts removed unnecessarily. Using the Mayo Clinic’s modeling, of the 639 women who participated approximately 120 of them would have developed breast cancer without the surgery. However, that leaves 519 women who would not have developed cancer. This may leave some critics thinking that many women have had unnecessary surgery.

While no one can provide assurance as to who will become a statistic, certainly one of the main motivations women have, beyond hoping to be cancer free, is to leave the worrying behind, according to Kahn.

"Your quality of life gets affected by the worrying—the waiting for the other shoe to drop is almost worse," she said. "This is a very difficult and unique decision for each woman. I hope my daughters don’t have to choose this method, but it’s the best we have right now."

Amy Siroky is a three year breast cancer survivor living in Arroyo Grande, California, with her husband and 4-year old son.

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