Positive BRAC2

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jamjar62
jamjar62 Member Posts: 135
This December it will be 9 years since I was diagnosed with bc and went through lumpectomy, chemo, radiation and reconstruction (large lumpectomy). At the time I was diagnosed, the BRAC testing was brand new, and I didn't have a family history of bc.

Last year, my gyn suggested I have the test done since I have a daughter. Bingo! My BRAC2 was positive. My onc immediately suggested a hysterectomy and double mastectomy. I had the hysterectomy in February but have resisted having the double mastectomy.

Recently I decided to go ahead with it and made plans to see a surgeon and a plastic surgeon. I ended up having such a panic attack that I cancelled both appointments. I am seriously considering not having the surgery. I could give a million reasons why I don't want to do it but it boils down to the fact that I want to be DONE with this after 9 years and not be messed with anymore.

Has anyone else with a positive BRAC2 chosen not to have the mastectomy? I saw a genetic counselor who thought as long as I was closely monitored, it would be okay. I see my onc twice a year with a yearly diagnostic mammo.

Thanks,
Karen

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  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
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    Karen... so sorry to hear
    Karen... so sorry to hear the results of the BRCA test. It is a very traumatic and heart wrenching decision. I have yet to take this test, have been putting it off. I have an 11 year old, but the "what if's" scares the *&^% out of me.

    Bear hugs to you, dear one.
    Ines
  • mamolady
    mamolady Member Posts: 796 Member
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    add MRI
    Karen,
    I did not have either BRCA gene but I had the bilateral mastectomy since I am the 3 generation with BC. I also had my ovary out. It is a very personal and permanent decision so take your time.
    If you don't have the mastectomy, ask to add an annual MRI to your screening. My sister has both annually at 6 month intervals so she is checked out every 6 months. My daughter is on the same schedule even though she is 28 years old.


    Cindy
  • jamjar62
    jamjar62 Member Posts: 135
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    mamolady said:

    add MRI
    Karen,
    I did not have either BRCA gene but I had the bilateral mastectomy since I am the 3 generation with BC. I also had my ovary out. It is a very personal and permanent decision so take your time.
    If you don't have the mastectomy, ask to add an annual MRI to your screening. My sister has both annually at 6 month intervals so she is checked out every 6 months. My daughter is on the same schedule even though she is 28 years old.


    Cindy

    MRI
    The genetic counselor actually suggested an MRI but I've resisted that because of the increased risk of a false positive. She also suggested going back to mammo's every 6 months but I said no to that as well.

    I feel at some point, you just need to say enough is enough and try to wrestle some control back. I don't want to jeopardize my health however.

    Thanks for your input!
  • jamjar62
    jamjar62 Member Posts: 135
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    Karen... so sorry to hear
    Karen... so sorry to hear the results of the BRCA test. It is a very traumatic and heart wrenching decision. I have yet to take this test, have been putting it off. I have an 11 year old, but the "what if's" scares the *&^% out of me.

    Bear hugs to you, dear one.
    Ines

    testing
    Ines,

    I wasn't not even remotely worried about my test being positive. I have no history of bc in my family; however, I was 40 at diagnosis. You could have knocked me over with a feather when I got the results in the mail.

    My daughter was 15 at the time and I decided not to tell her til she was much older. She saw an email I sent to my cousins about it so she now knows. Little snoop!

    There are times I'm glad I did it and then there are times I think "Ignorance is bliss!" Whatever you decide, it has to be a decision you can live with.

    Blessings,
    Karen