Has anyone had to pay for the testing themself and if so, how much did it cost? I met with the Gyn/Oncologist yesterday and he wants me to repeat the CA 125 in 2 wks and if it's still high or higher, then we'll probably move forward with the oopherectomy (he said hysterectomy isn't necessary). If the CA 125 is down though, he suggested getting the BRAC 1 & 2 test done. He called to check on my insurance for me and they said because I had only 2, and not 3, immediate relatives with ovarian or breast cancer, they wouldn't cover it. He said they quoted $3100 and seemed surprised that it was that high. I'm wondering if the price varies from place to place.
I don't think the price varies too much unfortunately. My insurance did cover testing for the colon cancer gene, but it was $2900. After the first person in the family has the test, then testing is $300-800, because they know exactly what to look for. Is there anyone else in your family that has had the testing? Most genetic counseling centers will also reapply after the first rejection. Did they do that with you?
Most genetic counseling centers will also reapply after the first rejection. Did they do that with you?
Unfortunately, no one else has been tested. My mom passed away in 1969 from ovarian cancer and I'm not sure they even had the test then. My sister's the one who had breast cancer, and I don't think they would've thought to test her.
As for the counseling center reapplying, what does that mean? I don't think they've technically even applied since my Dr. said the woman at the center said I don't fit the protocol for testing. Are there any ways I can pursue it differently?
My insurance company did pay for the trwssting after I went through the appeal process. I have no family history that we were able to trace with ovarian or breats cancer but I did loose my dad tp pancreatoc and liver cancer and my grandmother had colon cancer. I also was doagnosed with Ovarian and Uterine cancer at 42 which is realatively young for ovarian cancer. I had letters from my gyn/oncologist and the genetic counseling and my appeal was approved. The test cost about $3,000 and similar to what someone mentioned about the genetic testing for colon cancer if a mutation had been identified with my testing then subsequent family members would only be tested for the specific mutation and that would cost about $300. From what I understand, there is only one lab in the US that does this testing, if I remember correctly the name is Myriad and it is in the midwest. From anyone i have talked to about this testing everyone seemed to be quoted about the same amount.
Myraid is the lab that does the testing. Ask the counselor to appeal to your insurance company, or at least apply. Also, the counselors take
extensive family histories, even more thorough than your doctor. She/He will do a family tree, and go back a few generations. This includes your father's side, your cousins, etc. Not just your mother's history.
I would go to the counselor if this was not done. That is part of the counseling. They just can't take the doctor's word for it. And, you may have to search a little deeper. I have a cousin who had a low-stage endo cancer, but due to family circumstances at the time (my mother's dying, my other aunt in the process of dying, me and my other cousin being the "babies" of the family and her much older, we never knew she had had it, until I got diagnosed and she mentioned it). That, actually, was the key to knowing which side of the family had the colon cancer gene.