advice for BRCA2 positive woman

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Jenin
Jenin Member Posts: 2
edited June 2014 in High Risk for Breast Cancer

I am trying to solicit advice from women who've dealt with breast cancer, are high risk, have had mastectomies, etc. who might be able to assist me in making the difficult decision of whether or not to have a prophylactic masectomy.  I am a 30 year old BRCA2 positive woman, with some family history of BC (not strong family  history -- aunt on each side and great grandmother).   I am really terrified of breast cancer, and am also aware of a lot of the newest research indicating that early detection isn't really the key, as 90-96% of women with metastatic BC were diagnosed at an early stage.  Therefore, I feel as though a prophylactic mastectomy is my only means of  significantly reducing my risk of dying of BC, one of my greatest fears.  Of course I am aware that this is a major surgery, and have some reservations about the physical and psychological effects.  I also have a minor concern about being unable to breast feed if I have children, but I am not in a position to have them now and am not sure I can (psychologically) handle waiting until I do.  I also figure it's better for my future children to have a mother who can't breast feed but is alive.   Any thoughts/advice/shared experiences would be most welcome.  Thanks so much for any help!

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  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited May 2014

    Hi Jenin and welcome. I do not have the same circumstances as you; I am positive for a BRCA1 mutation and I only found out after a totally unexpected Triple Negative diagnosis in 2011 at age 34. I had no family history (I created the family history with my diagnosis), and my only child (a daughter who is now 20) inherited my mutation. She just had a prophylactic bilateral mastectomy with tissue expanders about 8 weeks ago and is doing very well.

    I understand the anguish that accompanies a diagnosis of a BRCA mutation. I also get it that it compounds the decision when there's not a clear family history that creates an immediate sense of urgency. Do you know from which parent you inherited the mutation? BRCA mutations are implicated in cancers other than breast and ovarian. Are there other types of cancers in your family? 

    If you haven't already, you may find a lot of support and information on the FORCE website: facingourrisk.org

    Please let me know if I can answer any questions you may have.

    Best Wishes.

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  • Jenin
    Jenin Member Posts: 2
    edited May 2014

    lintrollerderby, thanks for the response and pointing me to the FORCE website.  I am glad to hear your daughter (and I presume you as well) are doing fine.  I do know that I inherited the mutation from my mother (she has it, as well as her sister, so it seems like a fair assumption).  I don't know of any other cancers in the family except for those I mentioned

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  • Chamomile
    Chamomile Member Posts: 63
    edited May 2014

    Jenin - You mention "it seems like a fair assumption."  Have you seen a genetic counselor yet?  Who in your family besides yourself has been tested for the marker?  When you mention "has it," I'm assuming you mean breast cancer, but you may be meaning the genetic marker.  Could you clarify your circumstances?  Thanks!

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