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I briefly heard a story on the news this evening about testing teenagers/young women for the BRCA mutation. Recommending against early testing, I believe. Anyone have any info on this?

Evelyn Heilbrunn Profile
Asked by

anonymous

Survivor since 2012 about 7 years
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    anonymous
    Stage 2A Patient
    I sat next to a lady at radiation today who also had BC. We chatted a bit while we waited and I asked her if she got tested...she said no because her doctor told her it didn't matter! She was probably around 60...I was a bit speechless...didn't know what to say about it to her. I was told by my genetics counselor that if the BRCA came back positive we would have to talk about ovarian cancer being at a higher risk and they would want to do a bilateral mastectomy no matter what...Made me worry for this person a lot that she didn't know! I have three kids and if mine was positive I wanted to know. Luckily it was negative. I would think that testing people with a strong family history would be a good thing, especially if they are young. Maybe it boils down to money. It is super expensive to test.
    about 7 years Flag
    • Evelyn Heilbrunn Profile
      anonymous
      Survivor since 2012

      Didn't matter!!?? To whom!? Information about a genetic defect, whether it is BRCA or cystic fibrosis, needs to be shared with family. If the mutation exists there is a chance that someone or anyone in the family has it.

      about 7 years Flag
    • anonymous Profile
      anonymous
      Stage 2A Patient

      Exactly! Maybe it didn't matter in her personal situation, but I'm sure it would matter to her children, siblings, nieces & nephews

      about 7 years Flag
  • Thumb avatar default
    anonymous
    Learning About Breast Cancer
    I am 34 just tested positive for brca1. I have triple negative breast cancer. Had I been tested at 20 I would have opted for a mastectomy then in lieu of putting my body and family through this! Genetic testing needs to be more accessible and available for all women.
    about 7 years Comment Flag
  • Thumb avatar default
    anonymous
    Survivor since 2011
    Hmmm, that is a very strange ruling that it "doesn't matter." I thought it increased your chances of developing breast cancer pretty significantly! And I have 2 small girls -- ages almost 6 and 2 1/2 -- so I would want to know for them! If I were BRCA positive (which I am not) they could be tested at 20. As MJ said, I think it all boils down to money, sadly. They want to do mammograms later and every medical doctor shuns any kids of alternative therapy -- because drug companies would suffer? I don't know. My oncologist is always annoyed when I bring up and sort of study that I see on the news or read because he thinks it's just media fodder. He's probably right. The news stories are just sound bites to a bigger study and the whole picture is never revealed.
    about 7 years Flag
    • Erin Timlin Profile
      anonymous
      Survivor since 2011

      *any sort

      about 7 years Flag
  • anonymous Profile
    anonymous
    Learning About Breast Cancer
    Hi, Evelyn. GM.. look me up on fb. I want to be able to meet everyone "cyberly". A big happy family. It's under Norma Brown. God bless.
    about 7 years Comment Flag
  • anonymous Profile
    anonymous
    Stage 2A Patient
    I am positive for mutation in both genes. Even so, it s not recommended for my 3 daughters to start regular screenings until they are 32 (10 years earlier then my diagnosis age) and BRCA testing is voluntary dependent on insurance. I am VERY, VERY lucky that we ave incredible primary insurance, Executive Insurance that pays for anything primary doesn't pay for and allows me "perks" like private room, extra days in the hospital, private nursing, etc. But on top of that one of my daughters is no longer covered under our insurance, so we are offering to pay cash for her testing f she wants it. Again, I am lucky, but I wish the testing was free or cost effective. Myriad is holding our genes hostage because of their patent.
    about 7 years Comment Flag

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