How ironic that Angelina Jolie chose National Women's Health Week - and the week after Barbara Brenner, executive director of Breast Cancer Action and a feisty advocate for women with the disease died (from Lou Gehrig's Disease) - to share with the world that she had elected to have a double mastectomy in an effort to avoid breast cancer.
The press lit up with the news. Breast cancer "experts" and media moguls leapt at the chance to say Jolie had been "brave," and "courageous," and indeed she had: Choosing to have your healthy breasts amputated at the age of 37 takes guts and must have been a heart wrenching decision to make. In her case, it is understandable. Having an estimated 87 percent chance of contracting a potentially fatal disease is enough to make any woman think twice about whether prophylactic mastectomy is warranted. (I still wonder how that precise percentage was derived.)
Still, a chill ran down my spine when I heard the news and I wondered what Barbara Brenner, an outspoken breast cancer educator who had had breast cancer herself, would have said. Here's why.
Only about one percent of American women carry the BRCA1 or BRCA2 mutation that Jolie's doctors identified. Therefore, as H. Gilbert Welch, a professor of medicine at the Dartmouth Institute for Health Policy and Clinical Practice pointed out in a CNN commentary, her story "is not relevant to more than 99 percent of women [here]." Although it's a terrible thing to carry the gene, it affects relatively few women. Yet, now that Jolie has gone public, even more women will be seeking mastectomies, adding to an alarming increase in demands for the surgery ever since Sherly Crow, Marlee Matlin, and Miss America contestant Allyn Rose made the same choice or heartily endorsed it.
Mastectomy and all that it entails is not something to be taken lightly. As with other major surgeries, it can result in serious complications, along with persistent pain and limited mobility. Repeat surgeries may be necessary, especially if a woman chooses to have breast implants. If tissue is transplanted from other parts of the body to reconstruct the breasts, more incisions will be needed, and if muscle is removed for this purpose, long-term weakness can result. As one advocate put it, "it is not a breeze" and not a cure-all.
It is also an expensive proposition, as is the testing for BRCA 1 and 2. It costs about $3,000 dollars to be tested and many thousands of dollars to have elective surgery. Some insurance companies cover some of the costs, but many don't. That's okay if you're a movie star, but ordinary women, including many women of color, will never be able to afford treatment close to what Angelina Jolie has just experienced. And even she still has a chance, reduced though it may be, to getting breast cancer.
In The New York Times op ed. revealing her surgery, Jolie said "cancer is still a word that strikes fear into people's hearts." How many women's decisions around prophylactic mastectomy are based on fear-mongering rather than evidence-based decision-making? Was it responsible for Jolie to remind readers that "breast cancer alone kills some 458,000 people each year," without also providing the stats on the gene she carries?
Many women are choosing mastectomy -- even for healthy breasts -- when advances in early detection and subsequent treatment, including lumpectomy, offer viable alternatives. Joan Walsh of Salon.com made this case, based on her own personal experience. "I chose a course of rigorous medical follow-up," she posted, "[including] an annual screening mammography and twice-yearly breast exams by a surgeon." Walsh elected not to be tested for the BRCA gene, instead giving emergency attention to the slightest anomaly. "I'm so glad I didn't listen to the doctor who wanted to treat my breasts like "ticking time bombs,'" she says. As respected breast surgeon Dr. Susan Love noted in The New York Times, "When you have to cut off normal body parts to prevent a disease, that's really pretty barbaric when you think about it."
The risks and benefits of any breast surgery, and especially mastectomy, vary from woman to woman. As Dr. Isabelle Bedrosian, a surgical oncologist at M.D. Anderson Cancer Center in Houston put it in a New York Times report, "There is an upside to [Jolie's] story and that is that women will hopefully be more curious about their family history. [But] we need to be careful that one message doesn't apply to all. Angelina's situation is very unique. People should not be quick to say "I should do like she did,' because you may not be like her."Fortunately, few of us are. That should be the starting point if we are ever faced with a decision about breast cancer treatment options, even if that decision proves to be as difficult as the one Angelina Jolie made