by Patrick Rogers
WWD/Steve Eichner As you've probably already heard, Angelina Jolie published a piece on the editorial page of the New York Times today, describing the double mastectomy she elected to have after testing positive for a "faulty" BRCA1 gene, which increases her risk of developing breast and ovarian cancer. Jolie writes that her own mother died of cancer at age 56, and she wanted to assure her children "that they don't need to fear they will lose me to breast cancer."
Jolie's startling statement clearly struck a chord: Online commentators rushed to praise her for speaking out about her tough decision, and the haters have been out in force, slamming her for "butchery" and choosing an option that's not available to women without considerable resources or comprehensive health insurance. We asked Susan Brown, managing director for community health at Susan G. Komen for the Cure, for the facts about the procedure that doctors call bilateral prophylactic mastectomy--removing both breasts to prevent cancer.
Is a double mastectomy a widely accepted method for preventing breast cancer? "People who have certain gene mutations are at a substantially higher risk for getting breast cancer at some point in their lives, so for many women who are thinking, What can I do?, having a preventive surgery is one of their options. It can reduce risk by 90 percent, so if you are feeling the gene mutation is truly life threatening, having the surgery is a risk-benefit decision you make. Another option is to take a risk-reducing drug such as tamoxifen or raloxifine, and increase surveillance. You can have a mammogram and an MRI every year. It sounded like [Jolie] used a reasonable approach. She gathered information and used that information. I can only assume she weighed her options."
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What are the downsides of preventive mastectomy? "Sometimes there are complications from surgery, but often its more of an emotional response, whether to the surgery itself or to the whole process of finding out that you are at risk for cancer and then making these decisions."
Jolie writes that she had breast reconstruction preceded by a procedure called a "nipple delay" to preserve that part of her breast. Is that typical? "I haven't heard the term 'nipple delay,' but it's not uncommon for the nipple, the areola complex and the skin to be preserved. Just the breast tissue is removed."
Are preventive mastectomies extreme or are they becoming more common? "I don't have numbers for this, but I suspect that mastectomy is more common as reconstructive techniques have improved over the years. The other thing that has led to an increase is that insurance is more likely to pay for this today, and we have more information from genetic testing."
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What do gene mutations tell us about breast-cancer risk? "Let me stress that while having a gene mutation does put a woman at substantially higher risk, it doesn't necessarily mean she will get cancer. There are quite a few gene mutations that are likely involved, but there are two that we can commercially test for now, BRCA1 and BRCA2. Just to be clear, everyone has these genes, and when they work normally, they are tumor-suppressor genes. It's when they don't work, when there is a mutation, that there's a risk. With BRCA1, there's a 50 to 70 percent of developing breast cancer before age 70, and with BRCA2 the risk is 40 to 60 percent."
Jolie says her doctor originally put her risk at 87 percent. Is that the sort of specificity common in a conversation between a doctor and patient? "I assume the doctor was referring to a particular study, versus the range of studies we use, but, yes, some doctors do use percentages, if a patient is interested in those numbers. It depends on what the patient wants."
Who typically gets genetic testing? "First let me stress that these particular genetic mutations are really rare in the general public. Only between 1 and 400 and 1 in 800 women in the United States have them, or 5 to 10 percent of the women who are diagnosed with breast cancer. (The exception is among Ashkenazi Jews, where one in 40 women and men carry the mutations.) And it's an expensive test, a little over $3,000, so it's usually performed first on a person who has the diagnosis of breast cancer, and if the result is positive, then subsequently performed on other family members. We really suggest that women who are considering having gene testing first to speak with a genetic counselor who can gather family history going back generations and really help people decide what to do. The test itself is easy--it's a blood test--but sometimes the results have emotional and financial consequences."
For information about breast-cancer risk, preventive surgery, genetic testing, and more, and to learn about resources in your area, go to komen.org or call 877-GO-KOMEN (877-465-6636).
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by Patrick Rogers