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Kristen
02-13-2005, 11:32 AM
hi all.
At the advice of my breast surgeon I have consulted a genetics counselor who thinks I should be tested for the BRAC genes. Has anyone here on this board been tested? Do you mind sharing your results or experience of what it was like to hear neg or pos?
I have visited other boards that discuss this topic with there members. I was just wondering if there were many out there who have done this and should we suggest it as part of topics of discussion?

I know there are specific boards that deal with this topic and maybe it isn't realevent here. Just wondering. Thank you. Take Care Kristen

Sue
02-13-2005, 01:41 PM
Hello! My mother died of breast cancer at 55. She was diagnosed at about 50. When I was diagnosed at 50 I requested genetic testing. I was returned as normal (go figure). This is expensive. I got it pre approved and insurance paid. I thought it a necessity for me to mae informed treatment choices. They would been quite different had it been positive. I have found genetics are not well understood by other patients. One other patient said to me if you did not have the gene then how come you have BC?

*_Barbara H._*
02-13-2005, 04:32 PM
Hi,
I was tested this past year. I was diagnosed at age 50, and although there are a lot of people in my family who have had breast cancer, the genetic counselor didn't think that I had a high chance of having the gene. Apparently, more people have it who get bc at a younger age. However, I have 2 daughters and my sister also wanted me to be tested. The test did come back negative and my insurance paid for it. However, I believe that there are genes out there that have not yet been discovered that predispose one to bc and it's likely that I may have one of those genes. I try to encourage my daughters to eat organic food and lead as healthy a life as possible. I have just started to eat organic food this past year.
Best of luck with your decision.
Barbara H.

MarianneWA
02-13-2005, 07:19 PM
Hi Kristen - I was tested last summer: mother bc age 40 (died 48), I was diagnosed at 46, and I have a daughter 13, and sister 2 years older than me.
My insurance paid, and I was BRCA1 -ve , and BRCA2 had a "mutation of unknown significance". My onc said what this basically means is that if I want to have my ovaries removed, insurance would cover!

I skipped the genetic counselling as my onc said I understood all the implications. But now that I have the results and am planning to have my ovaries removed, he suggested I talk to the genetic people in Seattle and get my info. in their database (plus my sons go to UW so it's an excuse for me to go visit!) - my insurance covers this after a $25 co-pay. So I'm going to Seatltle this week, and then if you read my post under Susie's "ovaries removed" post there's a few more details.

Marianne

Bonnie
02-13-2005, 09:12 PM
My mother was diagnosed at 82 and my aunt died from BC in her 60's. I had it preappoved by my insurance company and was tested. It came back negative. I felt it was necessary to know because I have a daughter and my sister has a daughter. My sister didn't know if she wanted to know but in the end did want the information. Of course I was very relieved when it came back negative but I do know they are still looking for other genes that predispose a woman to bc and I won't be surprised when they find some more.

Bonnie

Celina
02-14-2005, 04:32 PM
Hi Kristen,
I have two sisters with breast cancer..they were both diagnosed in their 30's. My testing came back negative...I suspected it would because I was told that it is rare to have this specific gene mutation.
I go to the "high risk" centre for scans. Doctor there told me that there are many genes that would need to be tested in order to determine if you're at risk. This a very costly and time consuming task, so it is never done.

Kristen
02-15-2005, 01:07 AM
Celina,
I am so glad you tested neg, and I take it, it was for BRAC 1/2? She told me that there could be other genes involved but these are the only two that have been isolated for BC at this time.
Did you conitnue to have other tests? I am planning on just having the BRAC 1/2 test and let it go at that.
Even though you are unfortunately in the high risk group, did you feel some kind of relief that you weren't postive? Did anyone else get tested in your family? I hope you don't mind me asking all these questions, but it is a look into your past, present and future. Take Care. K

*_celina_*
02-15-2005, 09:37 AM
Yes, Kristen, it was the BRAC 1/2 testing that I had done. I'm not sure what I would have done had it come out positive, but I would have considered something radical...given what I now know about this disease.
I will not be doing any other testing at this point. I will have my yearly mammograms with ultrasound and continue to do self-examinations. I don't ever worry about getting this disease...perhaps ignorance is bliss!!
My oldest sister, the first diagnosed was tested first, but when her tests came back negative, they suspected mine would too. In fact, generally they test ONLY the first person diagnosed when possible.
No other family members, that we are aware of, have had breast cancer, or been tested. Hope this answers your questions.