Monday, June 17, 2013
Actress Angelina Jolie revealed in a New York Times op-ed that she underwent preventive double mastectomy. As would be expected of a personal revelation of such a well-known celebrity, it drew intense media attention. Her disclosure was brave and selfless and may save the lives of women in a similar situation, but is likely to be misunderstood by her myriad fans.
Jolie's mother died at the age of 56 of cancer. (We are not told what kind of cancer.) This lead Jolie to pursue genetic testing which found that she had a harmful mutation in a gene called BRCA1. This mutation greatly increases her risk of breast and ovarian cancer. It was this finding that led her ultimately to choose preventive double mastectomy in an attempt to minimize her future breast cancer risk. Her description of her decision and ordeal is poignant. If you haven't, please read it.
In this story of empowerment and survival, where is the potential for misunderstanding? Women are likely to misunderstand two issues – who should seek genetic testing for cancer causing mutations, and who should be considering preventive double mastectomies.
Let's unpack the decision to get genetic testing first. Mutations in two genes called BRCA1 and BRCA2 are linked with very high risks of breast and ovarian cancer. But these mutations are quite rare in the general population, and these mutations are estimated to be responsible for only 5% to 10% of breast cancers and 10% to 15% of ovarian cancers. So genetic testing is not recommended for everyone. The National Cancer Institute lists the following groups of women as having a higher likelihood of a harmful BRCA1 or BRCA2 mutation.
For women who are not of Ashkenazi Jewish descent:
--two first-degree relatives (mother, daughter, or sister) diagnosed with breast cancer, one of whom was diagnosed at age 50 or younger;
--three or more first-degree or second-degree (grandmother or aunt) relatives diagnosed with breast cancer regardless of their age at diagnosis,
--a combination of first- and second-degree relatives diagnosed with breast cancer and ovarian cancer (one cancer type per person),
--a first-degree relative with cancer diagnosed in both breasts (bilateral breast cancer),
--a combination of two or more first- or second-degree relatives diagnosed with ovarian cancer regardless of age at diagnosis,
--a first- or second-degree relative diagnosed with both breast and ovarian cancer regardless of age at diagnosis, and
--breast cancer diagnosed in a male relative.
For women of Ashkenazi Jewish descent:
--any first-degree relative diagnosed with breast or ovarian cancer, and
--two second-degree relatives on the same side of the family diagnosed with breast or ovarian cancer.
Women without these family history patterns are very unlikely of having a harmful BRCA1 or BRCA2 mutation. If you believe you might be in one of these groups the best way to get tested is to first consult a geneticist. A geneticist will evaluate your family and personal history and help you select the relevant genetic tests to order.
The other issue that women may misinterpret is Jolie's decision to have a double mastectomy. This decision is entirely reasonable in a woman with a harmful BRCA1 or BRCA2 mutation, because of her very high lifetime risk of breast cancer. Unfortunately in recent years women have increasingly asked surgeons for mastectomies in situations in which mastectomies are not indicated.
In an excellent and sobering article about how the drive to increase breast cancer awareness has unduly frightened hundreds of thousands of women, miscommunicated the benefits of mammograms, and failed to communicate the frequent harms of screening, Peggy Orenstein states that thousands of women consider double mastectomies after being diagnosed with low-grade breast cancer. In most women with localized breast cancer lumpectomies have been proven to be as effective as mastectomy in preventing recurrence, and the risk of breast cancer in the other breast is very low, so the decision to have a double mastectomy is driven purely by fear and a misunderstanding of the risk. It's also important to know that bilateral mastectomies do not decrease the risk of breast cancer to zero because some breast tissue always remains. So preventive mastectomies are only helpful for women at very high risk of breast cancer, and even for them, preventive surgery isn't the only option.
So I applaud Ms. Jolie for her courage in telling her story in the hopes that other high-risk women seek genetic counseling. And I hope that her fans understand that her decision and advice do not apply to the vast majority of women who are at average risk of breast cancer.
My Medical Choice (New York Times Op-Ed)
BRCA1 and BRCA2: Cancer Risk and Genetic Testing (National Cancer Institute)
Jolie's Disclosure of Preventive Mastectomy Highlights Dilemma (New York Times)
Actress's Move Shines Light on Preventive Mastectomy (Wall Street Journal)
Angelina Jolie, Breast Cancer Game-Changer (Wall Street Journal)
Our Feel-Good War on Breast Cancer (New York Times Magazine)
Albert Fuchs, MD, FACP, graduated from the University of California, Los Angeles School of Medicine, where he also did his internal medicine training. Certified by the American Board of Internal Medicine, Dr. Fuchs spent three years as a full-time faculty member at UCLA School of Medicine before opening his private practice in Beverly Hills in 2000. Holding privileges at Cedars-Sinai Medical Center, he is also an assistant clinical professor at UCLA's Department of Medicine. This post originally appeared at his blog.
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Amanda Xi, ACP Medical Student Member, is a first-year medical student at the OUWB School of Medicine, charter class of 2015, in Rochester, Mich., from which she which chronicles her journey through medical training from day 1 of medical school.
Ira S. Nash, MD, FACP, is the senior vice president and executive director of the North Shore-LIJ Medical Group, and a professor of Cardiology and Population Health at Hofstra North Shore-LIJ School of Medicine. He is Board Certified in Internal Medicine and Cardiovascular Diseases and was in the private practice of cardiology before joining the full-time faculty of Massachusetts General Hospital.
Zackary Berger, MD, ACP Member, is a primary care doctor and general internist in the Division of General Internal Medicine at Johns Hopkins. His research interests include doctor-patient communication, bioethics, and systematic reviews.
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Robert M. Centor, MD, FACP, contributes short essays contemplating medicine and the health care system.
Suneel Dhand, MD, ACP Member
Suneel Dhand, MD, ACP Member, is a practicing physician in Massachusetts. He has published numerous articles in clinical medicine, covering a wide range of specialty areas including; pulmonology, cardiology, endocrinology, hematology, and infectious disease. He has also authored chapters in the prestigious "5-Minute Clinical Consult" medical textbook. His other clinical interests include quality improvement, hospital safety, hospital utilization, and the use of technology in health care.
Juliet K. Mavromatis, MD, FACP, provides a conversation about health topics for patients and health professionals.
Dr. Mintz' Blog
Matthew Mintz, MD, FACP, has practiced internal medicine for more than a decade and is an Associate Professor of Medicine at an academic medical center on the East Coast. His time is split between teaching medical students and residents, and caring for patients.
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Ryan Madanick, MD, ACP Member, is a gastroenterologist at the University of North Carolina School of Medicine, and the Program Director for the GI & Hepatology Fellowship Program. He specializes in diseases of the esophagus, with a strong interest in the diagnosis and treatment of patients who have difficult-to-manage esophageal problems such as refractory GERD, heartburn, and chest pain.
Mike Aref, MD, PhD, FACP, is an academic hospitalist with an interest in basic and clinical science and education, with interests in noninvasive monitoring and diagnostic testing using novel bedside imaging modalities, diagnostic reasoning, medical informatics, new medical education modalities, pre-code/code management, palliative care, patient-physician communication, quality improvement, and quantitative biomedical imaging.
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David L. Katz, MD, MPH, FACP, is an internationally renowned authority on nutrition, weight management, and the prevention of chronic disease, and an internationally recognized leader in integrative medicine and patient-centered care.
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Alexander M. Djuricich, MD, FACP, is the Associate Dean for Continuing Medical Education (CME), and a Program Director in Medicine-Pediatrics at the Indiana University School of Medicine in Indianapolis, where he blogs about medical education.
Rob Lamberts, MD, ACP Member, a med-peds and general practice internist, returns with "volume 2" of his personal musings about medicine, life, armadillos and Sasquatch at More Musings (of a Distractible Kind).
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Paul Sufka, MD, ACP Member, is a board certified rheumatologist in St. Paul, Minn. He was a chief resident in internal medicine with the University of Minnesota and then completed his fellowship training in rheumatology in June 2011 at the University of Minnesota Department of Rheumatology. His interests include the use of technology in medicine.
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Peter A. Lipson, MD, ACP Member, is a practicing internist and teaching physician in Southeast Michigan. The blog, which has been around in various forms since 2007, offers musings on the intersection of science, medicine, and culture.
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Other blogs of note:
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Also known as the Green Journal, the American Journal of Medicine publishes original clinical articles of interest to physicians in internal medicine and its subspecialities, both in academia and community-based practice.
A collaborative medical blog started by Neil Shapiro, MD, ACP Member, associate program director at New York University Medical Center's internal medicine residency program. Faculty, residents and students contribute case studies, mystery quizzes, news, commentary and more.
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One of the most popular anonymous blogs written by an emergency room physician.