Part 2:
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.
Part 2.5
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!
anotheronewiththecancer 
Hey, thanks for the plug and damn, why couldn’t I know about the cost issue on my test Before they did mine?! Ah well, it’s not the difference between profit and loss for me (thank the Goddess!) – live and learn.
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Ha ha, At the time the cost was not a big deal for me, I had better insurance too. It is the principle of the thing. The medical industry makes enough money, they don’t need mine!
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I just wrote about Miss America today in my post ~ I’m going to check out the Huffington Post article you mentioned. Thinking of you.
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I read your post, plus the article you linked in your post. Shocking how comfortable others are when criticizing the actions of others. Also check out this other post on HuffPost: http://www.huffingtonpost.com/mark-e-robson-md/prophylactic-bilateral-mastectomy_b_2279537.html, by a doctor supporting this often made choice by women. He “gets” it, which is nice.
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Thanks for the link & for your comment. It is nice to have a doctor ‘get it’ without having to explain. I am glad we are both NED (No Evidence of Disease)! Let’s keep it that way! Hugs to you!
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I think that it is a good thing you did the test and if you are an Ashenazi Jew, it should have cost a lot less as well as the fact that you have two or more family members (like mother, aunt, grandmother) linked. Also I read about the Miss America contestant and in an article (http://www.nypost.com/p/news/national/her_final_breast_in_show_AXYEm5fsniQiRZVzX6G7LN) it says she did not test for BRAC1 or BRAC2 mutation but had a another rare mutation (wondering what that means). Also be glad you had the lumpactomy and you can be tested every six months to see if there’s another lump. If you do the bilateral your breasts will be numb and you won’t feel them. It’s painful and you have a lot of scars. Even tho I had a recurrence they caught it early and I am not sorry one bit that I kept my breasts. No matter what choice you make know you made the best possible decision at the time.
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Hi Susan—thanks for the link, I read it, along with another sent via comments. Both articles say it is some other gene, not the BRCAs, in question, naturally without identifying the gene. I was not concerned with the details of her story while I wrote, I confess, the mention I heard of her as I walked by the TV simply inspired me. I wish these articles were a bit more in depth. I do not trust their accuracy regarding the medical info; the NY Post article claims she does not have the BRCA genes, and that is incorrect—everyone has them, the mutation is the issue. I’m not going to really look into her case further, she isn’t the first or last celebrity, or woman even, that will be in the media for this I am sure. Like I said, the overall story just inspired me to ponder my how I felt about my choice, and to empathize with women who made a different call, because I think I can understand their motivation.
I will never be “glad” for much of anything that is a result of my cancer. I am grateful that I survived, for the drugs and care that helped me do so, and for numerous other things I listed in a previous post called Could’ve Been Worse. I also know that more severe surgery would be more painful and would include worse scars, although I am not a stranger to the post-op pain. And my scar healed wonderfully, but the fact remains that my nipple is gone, and having reconstructive surgery to replace it would still mean I would have no sensation. I can be grateful to be alive and dislike what has happened to me at the same time. And while I know I cannot go back and change any decisions I made—it is what it is, as that overused phrase goes—it is simply my nature to reflect on past events, to challenge myself to do a better job on anything in the future. What I’ve learned in this go round with cancer is to slow down and research my options more thoroughly, to make sure the medical service for which I am paying is all I expect it to be. I know I made the best choices I could with the info I had at the time, and going forward I will do even better. At the same time, I challenge the medical industry to do better as well, it is the only way to make progress.
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The major reason I had the BRCA test was my age at dx and that I’m an Ashkenazi jew and am Triple Negative. Still negative, but moot now that I have MBC.
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