ILc with Possible BRCA

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marie111
marie111 Member Posts: 119
ILc with Possible BRCA

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  • marie111
    marie111 Member Posts: 119
    edited September 2009

    Hi.

    I was dx in May with ILC and LCIS. I had a lumpectomy with SNB and am now doing chemo.  My Onc wants me to have the BRCA gene test to see if I am positive. My paternal grandmother died of bc in her 70's and my aunt(her daughter) died of bc in her 40's, so this I guess puts me in a high risk category. They want me to have the test done to figure out if I should go on to have mx's and my ovaries removed.  I am very concerned about having my ovaries removed and being in menopause. It really scares me ! Is there anyone out there who has bc and are BRCA positive as well and what have you had done to prevent recurrences or mets ? I though having bc was bad but I have always been really positive about the outcome. Now I feel like if I am BRCA positive it is much worse ...

  • Mutd
    Mutd Member Posts: 148
    edited September 2009

    Marie, not everyone with the mutation removes the ovaries, and when they do, it's often delayed until a leter stage in life, closer to the normal menopause age. Since your tumor was ER/PR+, you probably won't take HRT, but there are ways to untroduce estrogen "locally" to make your life better without ovaries (Estring, vagifem, you name it ... check at FORCE forums, there is a lot of frank talk about it).

    http://www.facingourrisk.org/messageboard/viewforum.php?f=3 

    But ER/PR+,also means that if you have any mutation at all, it's probably BRCA2 rather than BRCA1 (BRCA1+ tumors are usuall ER PR negative). And BRCA2 doesn't cause nearly as much risk of ovarian cancer as BRCA1.

     They also have a Canadian support group on FORCE, but I can't remember if it is in Quebec or Ontario. And a conference for mutation carriers and at-risk people is taking place in Montreal very soon, two weeks from today. Take a look!

    http://www.odon.ca/brca/layhome_sae.htm

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