Angelina Jolie and Breast Cancer
Today's obvious topic is all over the news: Angelina Jolie had bilateral prophylactic mastectomies and reconstruction earlier this year. Her mother died of breast cancer at 56, and Ms Jolie tested positive for the BRCA1 gene. She has six children and, very understandably, is scared of her risk and wants to do everything that she can to stay healthy and well. As one friend said this morning: "She may have done more for breast cancer than all the pink ribbons of the past decade."
Yes and not so fast....
Another friend emailed me that this was the only conversation at the beauty parlor this morning, and that the general concensus was "off with all breasts." I wish that someone at the New York Times had put in a few numbers. Genetically based breast cancers account for only 5-10% of the total; this means that the overwhelming number of women who are diagnosed do not carry the gene. As Ms. Jolie did indicate in her editorial, carrying the gene does not mean with certainty that a woman will be diagnosed with breast or ovarian (or both) cancer, but it surely does raise the odds.
My larger worry, I think, is that genetic testing is already on the edge of becoming a booming business. From my perspective, it is a very valuable test and service for women/people at risk, but it is not something that is appropriately marketed to everyone. I have heard that there are signs about the availability of the blood test in some GYN offices, and I suspect that those offices do not bundle genetic counseling with the service. I feel quite strongly that someone considering the test (and this should be only people with a strong family history or people who, for one or another reason, have been diagnosed with a breast or ovarian cancer at an age or of a type that suggests it may be genetically-dirven and who know little to nothing about their family history) should begin by meeting with a genetic counselor. There are clear standards of how to think about the decision to be tested and how to share those results should they be positive. It is also important to note that the genetic test, currently available through only one lab, Myriad in California, costs about $3000 for the full screen, and that not all insurances will cover it--and virtually few to no insurances will cover it unless a women meets certain criteria of family history that suggest she is at risk.
Angelina Jolie has made a brave and very difficult decision. I applaud her honesty and openness, and wish her a long and healthy life. I also fervently hope that this does not set up a run on genetic testing, often for women who don't need it, and/or decisions to pursue big and body/life-changing surgery that may also be unwise. In the slight chance that you have missed it, here is the link to her editorial: