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Is more genetic counseling (and testing) better? Or does it lead to unnecessary anxiety and surgery? Four doctors weigh in.

September 05, 2014

In the months after Angelina Jolie announced that she'd had a preventive double mastectomy, the number of women who were referred for genetic counseling for the BRCA gene nearly doubled at one Canadian clinic, according to a new study.

It's not clear if Jolie's case prompted more women to go to the doctor; doctors to tell women they should consider counseling; or women to decide to follow their doctor's advice and see a genetic counselor about a BRCA test, which can indicate a very high risk of breast cancer (the same gene Jolie carries).

So is more testing better? Or does it lead to unnecessary anxiety and surgery? The good news is that researchers discovered that the women seeing a genetic counselor in both the six months before and after Jolie’s announcement in May 2013 actually were at higher risk for breast cancer. Her story brought more people through their doors who might benefit from the test. The number of women found to have the gene rose by 110%, but that knowledge might not be for everyone.

Choosing to have a preventive mastectomy is most likely an incredibly difficult decision, although there are other options for women at high risk of developing breast cancer. More frequent breast cancer screens or taking medications like tamoxifen or aromatase inhibitors can help prevent breast cancer in high-risk women.

RELATED: What All Women With the Breast Cancer Gene Should Know

We asked four cancer doctors for their take on the "Angelina effect"—is it good or bad for women? One thing they all stressed: know your family history and talk to your doctor about your individual risk.

“This is a good thing. In the past, I would suggest many women meet with a genetic counselor to see if testing was appropriate, and they would decline to do so. They were worried about the stigma or that they’d have to have a mastectomy. Angelina Jolie took some of those fears off the table and now women are finally saying ‘I’m ready.'”
—Therese Bevers, MD, medical director of the Cancer Prevention Center at The University of Texas MD Anderson Cancer Center

“Awareness and knowledge is always good, but the message isn’t that everyone should get tested. The gene only explains a small percentage of breast cancers. As more testing becomes available, we worry that women will get tested without seeing a genetic counselor first, who is so critical in helping you interpret both positive and negative results. A double mastectomy is a reasonable thing to do in some situations, but it’s not the only option.”
Kala Visvanathan, MBBS, director of clinical cancer genetics and prevention service at the Johns Hopkins Kimmel Cancer Center

“The increased referral to genetic counselors is wonderful, especially since these referrals are mostly appropriate, according to the study. The trend toward preventive mastectomy is not necessarily a good or bad thing. Patients with cancer in one breast need to realize that they are not gaining much benefit from surgery on the opposite side, as the odds for developing cancer in that breast is low, but they will still have the greater risks of surgery and possible complications. The positive impact of this trend is that women are more aware of their options and are more likely to take an active role in treatment decision-making.”
Jessica Young, MD, breast surgeon and assistant professor of oncology in the department of surgical oncology, Roswell Park Cancer Institute in Buffalo, NY

“Angelina Jolie’s announcement has opened up the conversation on prophylactic mastectomies but I don’t think there’s been a significant rise in the number of surgeries as a result of the announcement. For patients who have the BRCA gene, prophylactic surgery is the best way to reduce the chance of developing breast cancer. Certainly some women with a strong family history test negative for the gene and still consider surgery. These women should be counseled on their real risk, as patients often overestimate their own odds for developing breast cancer.”
—Nora M. Hansen, MD, chief of breast surgery for Northwestern Medicine and director of the Lynn Sage Comprehensive Breast Center at Northwestern Memorial’s Prentice Women’s Hospital

RELATED:
Fear of Breast Cancer Recurrence Prompting Women to Choose Prophylactic Mastectomy
The Angelina Effect: More Women Getting Genetic Testing for Breast Cancer
Angelina Jolie’s Double Mastectomy: Will More Women Choose This Surgery?

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