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Jun 9, 2012 10:00PM
I am so sorry for everything you have endured, and at age 27 -- too much for such a young woman to bear!
This is a sore subject for me - and to make a long story short, get the BART test, if you haven't done so already. Myriad is a pain in the ass, and insurance companies are too, but this exact situation has happened 3 times in my family. My family history is awful and too painful to even put in this post, but to make a very long story short, my mother, her first cousin, and my first cousin (my mother's sister's daughter) all tested negative for BRCA mutations over the past 10 years - even as recently as 2009. Another first cousin of my mom's, who has ovarian cancer now, tested positive for a BRCA1 mutation. Only after I was diagnosed in Nov. 2010 at age 41 did it finally get figured out.
It never occurred to me to get genetic testing at the time of my diagnosis, because I thought it wasn't needed -- my mother had tested negative just 4 years before my own breast cancer was found. But my breast surgeon suggested I see a geneticist to be sure, and that was the first time I realized my mother's test may not have been entirely accurate. Thanks to a superb geneticist with some brains -- and to my health insurance company which actually agreed with his suspicions -- he ordered both the basic test and the BART testing, which revealed that I have a BRCA2 "deleterous" (sp?) mutation, which apparently does not show up on the "basic" test. (Interestingly, my mother and I are negative for her first cousin's BRCA1 mutation -- so there are not one, but two BRCA mutations in my family, which explains why our breast/ovarian cancer incidence is so prevalent over several generations).
It is absolutely criminal that Myriad Genetics does not make the BART testing part of the same damn test, and that so many health insurance companies only cover the "basic" test -- which misses my mutation entirely. I understand your frustration with all of this, and it is so hard to explain it to people who don't understand the testing process!! I did not find out my genetic test results until several months after my first lumpectomy. Had I known I was BRCA2+, I would have had a double mastectomy right off the bat, and my mother would have when she was first diagnosed as well, too. My mother is now stage 4, and had she known she was positive, she would not have chosen a lumpectomy the first time around. She has had breast cancer twice, and it is her second cancer (two separate types in two breasts, two years apart - should have been a major red flag to her oncologist??!! apparently not) that recurred in her liver and bones. Since I found out I was BRCA2+, I had the other breast removed and a full hysterectomy. But I understand that, at your age, this would be a VERY difficult decision to make. It's a lot of surgery, and it sucks. But for me, it was a no-brainer - my aunt died of ovarian cancer, I was 42 by that point and already had two children.
Have you followed all of the ACLU's litigation regarding this issue? Myriad is being sued on the basis it should not be allowed to "own" the BRCA mutations and its actions have led to all of this nonsense.
Since my diagnosis and genetic testing, all of the siblings and first cousins on my mom's side have been tested for our BRCA2 mutation and ALL OF THEM ARE POSITIVE. As scary as that sounds, the good news in all of this is that had I not had genetic testing, or rather had I not had the BART test specifically, none of them would have known their enormous risk. What happened to me, whatever the outcome, may have saved the lives of my relatives. If I accomplish nothing else in my life, at least my relatives -- and most importantly, my children -- will be able to do something about it.