Anyone Had Genetic Testing for BRCA1 or BRCA2 (Breast Cancer)

Hi MamaMaw,
I've had the BRCA testing. I was diagnosed with breast cancer eight years ago, at age 35. My oncologist suggested it because, although I come froma a woman-heavy family and no one before me had premenopausal BC, and I had no first degree relatives with BC at all, since it is so unusual to be diagnosed at that age, he felt there was a possibility of the gene mutation. It
took me some time however, to WANT to have the testing. But I did eventually have the testing, and it was negative.
What my doctor has told me and I understand is pretty much the standard, is that if your mother has had BC, screening for you should start at 10 years younger than her diagnosis age. Now, how effective that really is, is questionable. That would mean my daughter should begin screenings at 25, but mammo's are really not effective screenings for younger women with such dense breast tissue (MRI would be a better choice but hard to get approved)
If both grandmothers have the BRCA gene, it does NOT mean that your girls have a 100% chance of getting BC. Even someone who has the gene mutation does not have a 100% chance. Grandparents do not directly pass the gene on, parents do, and not every child who who has a parent with the gene mutation gets it, so even if your mom and MIL both have the mutation, it does not mean that you and your husband have it. A close friend who sadly died from breast cancer 2 years ago was one of 4 daughters. Her father has the BRCA gene. Two of the four girls have (well, one has, one had) the mutation. The other two do not have it.
Also, the first poster is incorrect. Having had breast cancer does NOT mean that you will test positive for the gene mutation. The gene is not the cause of all breast cancers or even most breast cancers. You can get BC without the gene.
I would suggest discussing with a genetic counselor rather than your general doctor, for more information. Good luck!

Some links from Sloane Kettering:
What are the chances of inheriting the BRCA gene?
http://www.mskcc.org/mskcc/html/8623.cfm#45821
What are the risks associated with the BRCA gene?
http://www.mskcc.org/mskcc/html/8623.cfm#45826
Here's the general info link
http://www.mskcc.org/mskcc/html/8623.cfm

The only thing is if you test positive it could be considered a pre existing condition.

regarding the previous post -- having cancer does not mean you would test positive for BRCA genes. My grandmother, mother and I all had breast cancer, and I tested negative for both genes. I am of the opinion that there are probably genetics mutations that exist that they haven't discovered yet.

the most important question is -- what would you do with the information? IF you tested positive, which I think a relative few do, would you get a prophalactic mastectomy? A hysterectomy? Or would you just increase your screenings? perhaps do more frequent mammograms, or throw in MRIs?

You already have elevated risk for getting cancer since your mother had it. I think you should schedule a mammogram for your peace of mind. I don't think genetic testing would benefit you all that much right now -- honestly even with my history of cancer (and an aunt who died of colon cancer) my genetic counselor was "not impressed" with my genetic risks.

I'm glad I did the tests, I guess, partly to share the information with my sisters. If I had tested positive, perhaps I would have had the mastectomy -- I had a friend test positive and she removed both breasts and ovaries. Intense! But on the other hand, I'm still not sure that there's not something floating on a cellular level that increases my risk that doctors just don't know about yet. So I do my regular mammograms and do self-exams every month. Beyond that, I try not to worry, which is easier said than done.

And as for your girls, this worries me too, I hate thinking that I doomed my daughter to it. But I try to be optimistic that by the time she is at the age when it would appear, cancer detection and treatment will be all the better.

My doctor suggested I get the test because I have a lot of relatives who had breast cancer -- all 9 of my paternal grandmother's sister and some of their kids. My paternal grandmother herself did not have breast cancer and neither of her two sons or any of her grandchildren have had it yet.

The benefit of getting the test is that, if you test positive, you can go on medication that significantly reduces your chance of getting breast cancer. The drawback of the drug is that you have to take it for 5 years straight, and you cannot get pregnant while taking it.

My doctor told me to get the test done after I'm done having children. It sounds like you may be done having children. This test could actually save your life.

A friend's mom had bc. Mom had the test done since she was older and it would not really effect her insurance much since she already had cancer. It can be considered a preexisting condition unfortunately if you test positive but don't have the cancer and then get it later in life. Anyway, mom tested negative for both 1 and 2. My sis had breast cancer a long time ago and I asked if she would be tested for 1 and 2. Her response was no because since she had the cancer already, she knows she would test positive. She also told me that since she had it then my girls would get it. But my sis has never really eaten well--lots of junk and fat, is extremely obese and a very heavy smoker.