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Most Women with BRCA Mutations Prefer Prophylactic Mastectomy

July 2, 2009

Written By Mary Alice Hartsock
Reviewed By Dana Farengo Clark, MS, MS

Most women with BRCA mutations believe that prophylactic mastectomy will reduce their risk of breast cancer and lessen their fears about developing the disease, results of a recent study indicate.

The study, conducted through the University of Texas M. D. Anderson Cancer Center, may help doctors and genetic counselors understand the needs of women making decisions after genetic testing.

Study Background

Genetic, or hereditary, cancers account for between 5 percent and 10 percent of all breast cancers. These cancers are caused by a change (or mutation) in one single gene that is passed down from generation to generation.

The two most common genes that have been linked to cases of hereditary breast cancer are called BRCA1 and BRCA2. Women with an inherited mutation in one of these genes have an estimated 56 percent to 87 percent lifetime risk of developing breast cancer, compared to about 13 percent in the general population. BRCA mutations also are associated with increased risk of ovarian cancer and several other types of cancer, including male breast and prostate cancer.

Some individuals with a personal or family history of cancer or certain risk factors for breast cancer choose to undergo genetic counseling, an educational process in which a genetic counselor helps them to interpret family history; learn about the risks, benefits and limitations of testing; and decide whether testing is needed and wanted. A genetic counselor also can help interpret test results and establish a plan of action to reduce risk. There are multiple options for breast cancer prevention including increased screening with annual mammography and MRI and more frequent breast exams. Women have the option to remove the breasts before cancer occurs to reduce the risk of breast cancer developing (prophylactic mastectomy).

Many women experience increased worry when they learn they have a BRCA mutation. With this information, women are making decisions about prevention to reduce risks as much as possible. Researchers in this study wanted to find out whether having a genetic mutation affects the way women think about screening and surgical options.

Study Design

Researchers sent follow-up surveys to 540 women who received BRCA testing at M. D. Anderson before July 2005. Of these surveys, 312 were returned; 217 respondents had breast cancer, and 86 respondents tested positive for a BRCA mutation.

Researchers compared the responses of women who tested positive for a mutation to those who tested negative to find out how women who underwent genetic testing view screening and prophylactic surgery.

Study Results

The researchers found that women’s attitudes about prevention differed based on whether they tested positive or negative for a BRCA mutation.

Among women with BRCA mutations, 70 percent agreed that prophylactic mastectomy is the most effective way to reduce breast cancer risk, compared with 40 percent of the women who did not have a BRCA mutation.

Almost 65 percent of high-risk women thought prophylactic mastectomy was the best way to calm their fears about developing breast cancer, compared with only about 34 percent of women who tested negative.

In one circumstance, the two groups largely agreed—neither had a majority that believed prophylactic mastectomy was extreme to prevent breast cancer. About 36 percent of women who had the mutation and 40 percent of women who did not thought prophylactic mastectomy was too drastic to use to reduce risk.

About 24 percent of women who tested positive were unsure if they desired screening or surgery, while 12.5 percent of those who tested negative were unsure. Of those who felt prophylactic mastectomy was the best way to reduce breast cancer risk and to reduce worry, 81 percent and 84 percent, respectively, had the surgery.

What Does This Study Mean for Me?

This study should not be used to make medical recommendations; however, if you have a BRCA mutation, the results may help you and your healthcare team discuss how to make decisions based on common emotions and fears among women who share your situation. Having this information helps women to be proactive in lowering their risk for breast cancer and allows then to make an educated decision in their own timeframe.

This was a small study, and only 86 respondents carried a BRCA mutation. Also, all participants received genetic counseling before and after testing at a single institution, and the methods and standards of that hospital could have impacted the experiences of the women.

Your experience may not reflect what the majority of women in this study expressed. You could feel comfortable with regular screening, or you may want to weigh screening against mastectomy. If you choose screening, you may have other tools available to you to help lower your risk of developing breast cancer, such as taking a medication to lower risk, or oophorectomy, a preventive surgery to remove the ovaries which can help reduce the risk of breast and ovarian cancer. Your decision will depend on your feelings about body image, other health conditions that may limit options and whether surgery can help alleviate some of the fear and some of the risk.

Perception of screening and risk reduction surgeries in patients tested for a BRCA deleterious mutation. Cancer. Vol. 115 Issue 8, pp. 1598-1604. Published online: 11 Mar 2009.

For more information on genetic testing, view our summer 2008 issue of Insight. (link to: summer 2008 issue of Insight under About LBBC, LBBC Newsletter and Publication Archive, National Newsletter)

Read more about opinions of surgery and risk reduction among women with BRCA mutations.

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