BRCA question

michele u · 04-04-2007, 10:03 PM

I never did get the genetic testing done for BRCA1 and 2. My question is why me get it tested since i've got breast cancer. My daughter is 8. i thought when she is about 20 she should get tested. Is that the right approach? Does anyone know if I do have the gene then will she 100% have the gene, or is there a chance she will not have it? I guess i'm alittle confused on that.

MichelleMoon · 04-05-2007, 03:50 AM

I was pretty sure I had one of the BRCA genes once BC started popping up all over the family, including my mom. Like you, I didn't see the point in getting tested but went ahead anyway, mostly to help some research efforts at the University. I have a daughter who is 10 and would advise her to get tested at 18 or so. Used to be that 18 was the youngest age they would test for BRCA since at 18 you have the decision making authority (?!) to make the decisions about your health.

Good luck with your decisions!

KellyA · 04-05-2007, 04:05 AM

Michele,

Hi. If you tested positive for the gene, she would have a 50/50 chance of not having it. based on computer calculations by the geneticist, i had an 88% chance of carrying the gene (based on family history). I turned out negative.

One thing, as petty as it seems, is that I would recommend for someone who was going to be tested, WHO DID NOT HAVE CANCER YET, to have all their ducks in a row beforehand with life insurance, etc. I was advised that once you have testing, and if its its positive, you can have some difficulty getting ins. This didn't apply to me because I had already been dx'd with cancer and wasn't getting any anyways ( they run the other way when they see me now!) Just something to remember for later when your daughter is older.

Love, Kelly

Lauriemn · 04-05-2007, 04:10 AM

If you have the gene, there is a 50% chance your daughter will have it. I also have a young daughter, but my decision to be tested was for my sisters,who would also have a 50 % chance if I had it.

It turned out I didn't have the gene, and I think I read on here that Her2 cancers are rarely genetic.

Laurie

kim · 04-05-2007, 05:18 AM

I had the genetic testing done. What I was told was they ideally like to test the person with the cancer. Then when they test other family members(parents, siblings, children...) they test off the original results(I believe this helps them know the genes location), which makes the test less expensive for everyone else. My insurance paid for my test. I was negative, if I had been positive my children would have had a 50% chance of inheriting the gene from me.

Hope this helps,
Kim

LAURIE · 04-05-2007, 08:27 AM

I was told the same thing about the 50% and also the reduction in cost for other members (including cousins) of my family if I was posititve. But the number 1 reason I did the testing was for my risk of ovarian cancer. If I tested positive I would of had a increased risk of ovarian cancer (even more than what it is already) and would of chose to have them removed. I tested ngative so I am keeping them for now.

michele u · 04-05-2007, 10:37 AM

thanks everyone. I thought that it was not 100% that my daughter would have it even if i tested positive. And the insurance hassels, i'm sure are not fun!!

Karen Weixel · 04-05-2007, 10:44 AM

I did get the test because on my mom's side, I am the 12th person to get bc.

When I went in for the test I was told that typically, Her2+ bc does not have a genetic link and so therfore, women Her2+ bc usually are not BRCA 1 or 2 positive. I was negative.

The woman I worked with did say that our family probably does have some genetic mutation that just hasn't been identified yet (I was told that at Stanford, too). Several of my mom's male cousins have gotten stomach cancer. Lovely.

Karen