Saint Angelina is getting on my nerves. I’ve used this space before to vent my feelings about the emaciated, leg-jutting, holier-than-thou Angelina Jolie, and the latest developments haven’t changed my opinion. “How can you not appreciate her brave decision?” friends ask. “How can you not admire her selfless revelation to the world that she has undergone prophylactic surgery?”
Angelina Jolie had genetic testing that indicated a high likelihood that she would develop cancer. The BRCA 1 gene mutation that she carries increases the likelihood of developing breast cancer to 80 percent and ovarian cancer to 55 percent. It also increases the likelihood of developing fallopian tube and prostate cancers at smaller percentages.
Scary stuff, right? An 80 percent chance of developing breast cancer would send most women to the surgeon, right? Not so fast. What exactly does preventive gene testing offer to the informed patient? For the most part, state and federal laws do not require insurance companies to pay for predictive testing. And while some companies may pay for it, especially if there’s a high instance of breast cancer in family members in their 40s or younger, some companies may not. In addition, while BRCA 1 and 2 are sometimes covered, other cancer-related gene mutations that present in much smaller populations are routinely not covered.
So let’s say you want to undergo genetic testing and either your insurance company doesn’t cover it or you don’t qualify. Out-of-pocket cost for such testing can run around $3,000. What will the testing tell you? It will tell you if you have an inherited gene mutation that affects your chances of getting several types of cancer. If you have a positive result for an inherited mutation, it means that mutation exists in all of your cells. So while it makes sense, say, to have a double mastectomy prophylactically, the procedure will not affect the cells that may still cause the three additional cancers with which BRCA 1 is associated. To decrease that elevated risk, you would have to remove your tubes, ovaries and prostate. A positive result also indicates that you may develop cancer, not that you will. A negative result, by the way, doesn’t mean you’ll never develop cancer—you just don’t have as high a likelihood as someone whose tests show the presence of BRCA 1.
I don’t come to this discussion without some honest experience. My mother stayed with me for several weeks last month as she recovered from double mastectomy surgery. Cancer was present in one breast. Despite the small likelihood that it would develop in the other, Mom made the decision to have them both removed. And, at her age, the additional time on the table was a deciding factor in not having reconstruction, so she is forever changed physically. Emotionally it takes it’s own measure of recovery, and she’s doing well.
I know what double mastectomy surgery and recovery entails. What I don’t know is what Angelina Jolie thinks she’s done to further women’s health issues or breast cancer research or mastectomy surgery recovery. All she has done, in my opinion, is elevate the concerns of women about a gene mutation that exists in less than five percent to 10 percent of the population and sent them scrambling for expensive gene testing that may or may not tell them a thing. Perhaps Saint Angelina can’t see that she may have done more harm than good.