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Risk in older women with BRCA1

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janeu
janeu Member Posts: 1
edited September 2023 in High Risk for Breast Cancer

I found out, at age 66, I have the BRCA1 gene mutation. I'm debating about whether to have the prophylactic mastectomy. Anyone else have this experience? Have you been told what your chance of getting cancer at your age is?

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  • katg
    katg Member Posts: 223
    edited August 2023
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    Janeu. I hope someone with BRCA1 writes soon for you. I was diagnosed with Brca2 in August of 2021. Cancer in my left breast. With all the information they provided and the numbers from my biopsi, and being 61 years old, I ended up with a double mastectomy and the removal of my ovaries and fallopian tubes. My younger sister had the genetic test and she carries Brca2, She had her ovaries and fallopian tubes removed in 2022. We both now have a 98% chance of never getting ovarian cancer. Our older sister, decided to roll the dice on the test. In June of 2023 she was having stomache and bloating issues she thought was from her tummy issues of the past. Nope. Biopsi revealed Ovarian Cancer. Looks small in scans, so she is 2 chemo treaments in of 3 before surgery. She called me in June and said "I should have" when you two did it.

    What is your familial history?

    We do not know what our outcome will be. I wish we did. Please ask your doctors. Check with a medical oncologist. Are you near a place like City of Hope in California? Cancer research hospitals will have suggestions. You will then make the choice best for you.

    My younger sister with the Brca2 mutation also has rheumatoid arthritis. Crazy. She decided to seek care at the Cleveland Clinic one state over to treat the arthritis after reading they are a pioneer in the treatment. Be your advocate as you make a decision. Not everyone who has the mutation will get the cancer. Me. I had the cancer, so I never had the chance to make any other choice. I went for "curative" as my medical oncologist said.

    Thank you for posting.

  • moderators
    moderators Posts: 8,287
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    @janeu It's a really difficult decision that you are faced with. @katg, we really appreciate your thoughtful response. Not sure how much you have read about it, but here are some articles in case you would like to read: https://www.breastcancer.org/treatment/surgery/mastectomy/types/prophylactic . https://www.breastcancer.org/treatment/surgery/prophylactic-ovary-removal/what-is

    We're here for you!