At 39 years old, Kimberly Barnes learned that she had a 69% chance of developing breast cancer by the time she was 80. That’s a staggering number compared to the average woman’s 12% risk. Barnes carries a mutation in the BRCA2 gene that predisposes women who have the gene to breast cancer. Knowing that she wanted to live the longest, highest quality life possible, Barnes decided to have a preventive double-mastectomy.

To her, a long, high-quality life meant continuing her work as a stay-at-home mom to her two young children and living to see high school graduations, weddings, and the births of grandchildren without the fear of being sidelined by cancer treatment. Breast reconstruction surgery after her mastectomy, Barnes determined after much research, ran counter to those plans.

Like Barnes, most women — some 60% — pass on breast reconstruction after mastectomy. It’s less common, however, for a woman to be as informed as Barnes and to make a decision so well aligned with her goals, says a recent study in the Journal of the American Medical Association (JAMA).

The decision to have breast reconstruction after mastectomy is a complex one. There is no standard recommendation. Instead, the choice ought to be based on what’s important to each woman. Choosing the option that best aligns with a woman’s values and preferences requires ample information about the risks, benefits, and expected outcomes of each.

“A woman needs to think about her goals — whether it’s the quickest recovery so she can get back to her kids or to have the most natural looking and feeling breasts possible — and push that back to her provider by saying, ‘How do my goals fit with these options?’” says Clara Lee, MD, a plastic surgeon who specializes in cancer reconstruction at Ohio State University Wexner Medical Center in Columbus. Lee co-authored the JAMA study.

A decision that doesn’t match one’s wishes

Among women who have mastectomies, as many as 57% make decisions about reconstruction that are misaligned with their priorities and based on limited understanding of their options. Lee’s study evaluated the decisions of 126 women.

About 40% had breast reconstruction after mastectomy, while the remainder did not. The women completed a test of their understanding of their options, including risks, number of procedures required, the difference between types of reconstruction, the effect of radiation, women’s satisfaction rates with the choices, and risk of recurrence.

They also answered a questionnaire about their preferences regarding having a breast shape and the risk, number of procedures, and duration of recovery they would accept.

The study authors then determined which option — mastectomy with or without reconstruction — was best aligned with the preferences each of the women had expressed. For example, if a woman ranked having a breast shape higher than any other concern on the questionnaire, reconstruction was the best option for her. The authors calculated the number of women whose choices reflected their preferences.


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A woman’s decision was “high quality” when she scored a 50 or higher on the knowledge test and her ultimate choice aligned with her preferences. Based on these criteria, just 43%of the women made high-quality decisions.

But how does such a mismatch happen?

“Patients whose preferences show they are really concerned about complications, for example, but don’t realize what the risk [of reconstruction] actually is, might end up agreeing to a surgery that they would have thought twice about if they had really understood the risks,” says Lee.

The same was true on the other side, Lee says. Some women whose questionnaire indicated a preference for reconstruction didn’t end up having it.

“This implies that their knowledge of what these procedures entail prior to the process isn’t very good,” says Grant Carlson, MD, a breast surgeon at Emory Winship Cancer Institute in Atlanta.

The deciding factors

Cindy Carnahan had all the information she needed. “The idea of feeling and looking whole again after two surgeries was very exciting to me,” she says. Carnahan, a 62-year-old retired art teacher, had her left nipple removed several years ago when doctors found cancer there, a condition called Paget disease of the breast. After a mammogram uncovered more cancer early this year, Carnahan’s doctor recommended she have the breast removed.