BRCA Roll Call

Aram
Aram Member Posts: 417
edited July 2021 in High Risk for Breast Cancer

Hi all,

I didn't find a similar post, so here it is. Yesterday I got the call from my genetic counselor that I am BRCA1 positive. I did some search here to see how many we are and I didn't really see anything. What makes my situation kind of unique is that I am Her2+ and apparently BRCA positive and Her2+ is very rare. I was wondering how many of us are here? Maybe we can discuss clinical trials for prevention, or any other tips you might have on how to leave with BRCA positive diagnosis.

I got this book from Amazon yesterday: Understanding BRCA: Living with the breast cancer gene. In simple terms it explains what BRCA means and what the current research is. I am half way through the book and really recommend it to anyone in the same boat.

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  • 2019whatayear
    2019whatayear Member Posts: 767
    edited July 2021

    I have a pathogenic BRCA2 mutation. F.O.R.C.E has a facebook group for people with mutations, if you are looking for groups. I just got approved via insurance to take Lynparza as a preventative drug for one year, based on the OlympiA trial results. I am going to start it on Sunday.

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  • Aram
    Aram Member Posts: 417
    edited July 2021

    Thank you. I will check the Facebook page.I see you had BSO.

    I just checked the trial page. So I see it is for HER2-. I first thought it is for ovaries.

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  • 2019whatayear
    2019whatayear Member Posts: 767
    edited July 2021

    Do you mean the Lynparza? If so yes it is currently used by ovarian cancer people as a maintenance drug after active treatment.

    Yes 10 days after I finished radiation I had a BSO, I was 49 at the time. - benign thank goodness. If I had known I had BRCA2 b/4 cancer I would have had preventative surgeries in my late 30s but I didn't know :-)


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