The world was stunned this week to learn that Angelina Jolie invented genetic cancer risk. Well not really, but she’s certainly put it out there in a big way. And I thank her for her candidness about this very personal issue. I’m sure she knew she was opening herself up to a shit storm of criticism along with the monumental support she’s received. But the criticism, which has been upsetting to those of us who carry the same mutation, has a good side too. It gives us an opportunity to educate. And to that end, I’d like to clear up a few myths.
Truth: She does too. And they probably look (and feel) almost the same as they did before. Mine do. She still has the same skin and nipples she was born with. It’s just the filling that has been replaced. Sadly, they’ll be permanently numb. That’s one of the really sucky trade-offs, but the nerves pass through the breast tissue, so they go.
Truth: There is some truth to that, but not as much as you might think. It’s not much comfort to those without insurance, and I honestly don’t know what’s going to happen under Obamacare, but right now, if you have insurance it may well cover the test, the mastectomy AND the reconstruction. You might have to do some homework and wrassling, but if you have a very suspicious family history you can argue for the test – my sister did so successfully after initially being denied. And if you have the BRCA mutation your insurance probably covers mastectomy, even if you don’t have cancer. And if your insurance covers mastectomy, it’s FEDERAL LAW that it must also cover reconstruction – whether you had cancer or not. It is NOT considered cosmetic or elective. The Supreme Court is currently looking at the gene patent that has resulted in the test being so costly. Hopefully, that chokehold will be released and the price of testing will come down.
Truth: Have you ever endured or watched someone endure “treatment”? Chemo and radiation are hell on the body. Radiation can actually lead to other cancers. Chemo is POISON. Hormone blocking drugs like Tamoxifen have no effect on most BRCA-related cancers. Despite all the pink ribbons, breast cancer is still the second leading cause of cancer death among women (after lung cancer) and long term survival rates are not rising much. I felt my choices boiled down to: surgery and no cancer or cancer AND surgery AND chemo AND radiation. Would you play Russian Roulette with a gun that had one empty chamber?
Truth: It’s true! Nobody dies of breast cancer. They die because breast cancer has spread to vital organs. The myth that breast cancer is curable is pervasive, but sadly untrue. Many of the “cures” are due to the types of cancer that are being detected by mammograms and treated aggressively. Some types are very slow growing and would likely never spread. Many doctors believe they may not even need to be treated at all but merely watched – like prostate cancer. At the other end of the scale is “triple negative breast cancer.” This is the most deadly kind. It does not respond to hormone therapies, it’s aggressive and it metastasizes at microscopic sizes. By the time a mammogram or even an MRI can detect it, it’s already spread to other parts of the body. A whopping 75% of breast cancers in BRCA+ women are triple negative. Compared to 15-20% in the general population. And I’m supposed to risk those odds to keep my breasts? I don’t think so.
Thank you for letting me get this off my chest. Keep the ignorance coming. I welcome the chance to explain. In fact, I’m going to start an occasional feature in this blog called “Ask the Mutant.” Send me your questions or share comments you’ve heard and I’ll do my best to answer.