My previous post wound up as a (self) education piece on whether or not anyone should bother getting BRCA testing, since positive results are so rare. I’ve been kicking myself for not doing the research prior to having the test. I trusted the people around me who urged me to have it done. But I cannot fault those who urged me to get the test too much; with the strong family history, it really is surprising that I am negative (unless it is a false negative). I was so relieved with my result, I wonder if the testing counselor was a bit baffled when we discussed the news; I think she expected a positive result as well.
This may just be my interpretation of how the BRCA testing is presented; it just seems with all the attention and discussion BRCA gets (at least in my cancer experience), all the percent numbers (how many women actually have the mutation, how many women with strong family histories have it) should be higher. And does the mutation cause the cancer—or is this more of a case of: no mutation=you might get breast cancer, and mutation=you will probably get breast cancer? I for one am still more interested in the cause and prevention, and while I am sure genetic research is important, how is it helping anyone outside of the few that have the mutation NOT get cancer? And why is breast/ovary removal the recommended prevention method for those with the mutation? Uh, something better please?
When I started the previous post, I explained I took the test so I could use the information as a factor in making my decision about prophylactic surgery. If the results were positive, would I have gone through with it? According to the testing counselor, a positive gives some women clarity to decide in favor of surgery. I think I was using the negative as an excuse to NOT have it.
What brought me back to this train of my thought about BRCA testing was the news about the Miss America or USA contestant, or whatever she is (I don’t follow beauty pageants), and her impending bilateral mastectomy, which she is choosing to do because she has this gene mutation.
I cannot and will not fault any woman for the decision to have this preventative surgery. In fact I wrote in defense of the decision in comments on a Huffington Post article that implied women were opting for too much surgery. What that article’s author did not consider is the sheer horror of having cancer; the author instead focused on the rates of surgery in relation to surviving cancer, not just having it. That is one of the discussion points of cancer that just makes me hopping mad. Of course we want to survive. But when will the number crunchers get it through their thick skulls that we’d like to not have any cancer in the first place, thank you very much.
Sometimes I do wish I’d had the bilateral mastectomy; perhaps it would cut down on the ever-present fear of more cancer. But ultimately for me, I think the horrors of cancer were all equal; the disease, the treatment, the side effects, and yes the surgery. I am not sure I’d want to experience one horror (removal of breasts) to alleviate the threat of the other horrors. For me right now my fear of cancer’s return is that it will make an appearance some other place—lung, stomach, brain—in addition to my breast, so removing them won’t really rid me of much of my fear. So, I cannot say with any certainty that if I’d had a positive result I would have gone through with surgery. And that is why, what with no children, no desire for surgery, and the knowledge that BRCA mutations are really not a cause of cancer, I just wish I had not bothered with the test.
Thanks to ridingthebcrollercoaster’s comment to my previous post, I was reminded of a factoid I failed to mention before. While the BRCA gene mutation is rare in the general population, there is a higher incidence in women of Ashkenazi Jewish heritage. According to Five Lessons I Didn’t Learn from Breast Cancer (and One Big One I Did) by Shelley Lewis, “because scientists have isolated the part of the gene that needs to be tested on those women…their cost of being tested is much less.” So, if you are reading this and are a woman of Ashkenazi Jewish heritage considering having the test done, I urge you to mention this cost issue in your discussions before getting the test. I hope this helps!