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BRCA1 gene carriers with female children

vjgllc
Posts: 2
Joined: Apr 2003

I am 36 yo and was diagnosed with breast CA in June of 2002, during my second pregnancy. I have undergone treatment, had my second healthy baby girl, found out I was BRCA1 positive and have already had my second mastectomy and a hysterectomy 3 weeks ago. I'd like to know if any of you have tested your young female children like my 3yo and my 7mo old for the gene. Have their been any consequences to testing? Have you gotten any advice? Do you know of any genetic engineering trials for BRCA1 positive people? Thanks for the input.

Sandis
Posts: 85
Joined: Mar 2003

I am 54 and was diagnosed with BC in November. I tested positive for BRCA2 gene. My sister and brother were tested after I was tested and they are both positive. My daughter is 26 and pregnant with her second child. I have several young adult nieces also. Most of them plan on increasing screening but not on being tested until they are ready to consider hysterectomies, etc. They are concerned that finding out they are positive when they aren't ready to do anything other than increase screening will just make them anxious. So, we pray for them and my 2 year old granddaughter and the young women are getting mamograms every six months, vaginal sonograms, etc. I don't know of any genetic engineering studies. My personal thought is that you should enjoy your young daughters and help them have a healthy life, not gain too much weight, exercise, etc. and wait for testing. But, you have to do what's right for you. I had a bilateral mastectomy because of the testing and will have the hysterectomy after the chemo is done. My thoughts are with you and your young daughters.

vjgllc
Posts: 2
Joined: Apr 2003

Hi Carla. Thanks for your reply. In answer to your question about genetic testing, there is one genetics lab called MYRIAD Genetic Laboratories in Utah where testing is done. They have their own website (I'm not sure of the call letters), or they recommend logging onto www.bracanalysis.com or calling 1-800-469-7423 for information.
BRCA testing can be done through any center that has a genetic counselor. Your doctor can refer to the nearest genetic counselor. It may take several months to complete the process because he/she will want to meet with you, explain your chances of having the gene based on your personal and family history, make sure you truly want the information, and then he/she will have to find out if insurance will cover the cost. This depends on your insurance and, whether or not the insurance company thinks, with your history, you need testing. Regardless of insurance, however, you may elect to pay for the test yourself which can cost up to 2,000 dollars. The counselor or even the lab can tell you how to get it done.

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