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Lost Opportunities from Angelina Jolie

Posted 12/20/2013

Posted in

  I know, I know. I am pretty sick of this subject, too, but I think that this article from Eureka Alert is a good summary of what happened as well as what might have happened, but did not. There is no question that Ms. Jolie's very public statements about her choice and her surgeries have been big news and have made many Americans (and others) think, maybe for the first time, about breast cancer genetic risk, mutations, possible prevention strategies.

  There are the obvious criticisms which seem fairly petty: she had access to care that few can imagine and a support system that all of us might covet. Not to mention that, no matter what, she is absolutely gorgeous, and I suspect that her reconstructed breasts look pretty good, too. I have been shown (and thank you to all the women who have shared themselves with me) many reconstructed breasts, and some look better than others. It is usually true that younger women seem more likely to have "pretty" results (non-medically speaking, suspect that this is due to just younger tissue being more elastic and easy to work with), and women women who can have nipple or skin-sparing mastectomies often look terrific.

  Here is what didn't happen after all the press re Ms. Jolie: women do not have a better understanding of cancer risk, BRCA mutations, prevention choices. There has been a steady increase in the numbers of women opting for bilateral mastectomies after the diagnosis of breast cancer in one breast, and her decision no doubt fueled this trend. Let's be clear: for women who carry (as she does) a BRCA mutation, the medical recommendation usually is bilateral mastectomies. For women without the mutation who have a single side breast cancer, the medical recommendation is very rarely to have two mastectomies.

  Here is the start of the article and a link. And then I promise to leave this subject.

Angelina Jolie's preventive mastectomy raised awareness, but not knowledge of breast cancer risk

Survey of Americans suggests a lack of understanding of genetic risk following Jolie's public announcement of her preventive double mastectomy

College Park, MD – Angelina Jolie heightened awareness about breast cancer when she announced in a New York Times op-ed that she had undergone a preventive double mastectomy. But a new study led by researchers in the University of Maryland School of Public Health and the Johns Hopkins School of Public Health reveals that widespread awareness of Jolie's story did not unfortunately translate into increased understanding of breast cancer risk.

The survey of more than 2,500 Americans found that three out of four were aware of Jolie's story, but fewer than 10% of those could correctly answer questions about the BRCA gene mutation that Jolie carries and the typical person's risk of developing breast cancer. Though very rare, women with harmful mutations in either of two genes, BRCA1 and BRCA2, have a risk of breast cancer that is about five times the normal risk, and a risk of ovarian cancer that is about ten to thirty times normal. The study is published today in Genetics in Medicine.

"Ms. Jolie's health story was prominently featured throughout the media and was a chance to mobilize health communicators and educators to teach about the nuanced issues around genetic testing, risk, and prophylactic surgery," explained lead author Dina Borzekowski, who is a research professor in the University of Maryland School of Public Health's Department of Behavior and Community Health. "It feels like it was a missed opportunity to educate the public about a complex but rare health situation."

http://www.eurekalert.org/pub_releases/2013-12/uom-ajp121713.php

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