Waiting on BRCA results

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cajunqueen15
cajunqueen15 Member Posts: 794
edited August 2015 in Just Diagnosed

Anyone with me? I had the blood draw 12 days ago and it was estimated the results would be back in 10 business days, which would be Thursday. My PGM died in her 40's from ovarian cancer. My MGM died in her 50's from glioblastoma (brain tumor), both of which are possible markers for carrying the mutation. I have three young children.

The results will likely determine the need for a prophylactic oophorectomy at 40, which will put me into menopause (with no chance of hormone replacement therapy) but probably not change anything about my treatment for breast cancer.

Mostly, my concern is for my children.

Tick tock, tick tock.


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  • Larkspur
    Larkspur Member Posts: 88
    edited August 2015

    I am indeed with you, Cajunqueen! I met with genetic counselors and provided a blood sample just yesterday. There's a fair amount of all kinds of cancer on both sides of my family, and I lost my only sibling to glioblastoma when he was in his early 50s, so I'm wondering what I'll find out.

    I'm in my 60s, so a prophylactic oopherectomy wouldn't be as dramatic for me as for you, but that doesn't mean I relish the prospect.

    Hang in there! Whatever you learn will be enormously helpful for your children.

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  • cajunqueen15
    cajunqueen15 Member Posts: 794
    edited August 2015

    Thanks, Larkspur!

    I'm so sorry to hear about your sibling. :( I don't know about you, but I had no idea that glioblastoma was one of the "markers" for the BRCA mutations. It seems to be one of those cancers where not much progress has been made in the way of treatment. I read an article about this in Time Magazine, March 30, 2015, while waiting for a surgical consult.

    If we have to have our lady bits removed, I'm sure we'll be okay, but I don't relish the prospect either. We are all done having children, so it's not that, but my doctor tells me that the side effects are not good and there will be nothing they can do to alleviate them since I am 99% ER+. And I will end up with osteoporosis EARLY, which is why they would not consider it until 40. I'm okay with hot flashes and all that, I just want to parent my kids, but the bone loss so young is a little frightening. Would I end up with a lot of broken bones over the years?

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  • inks
    inks Member Posts: 746
    edited August 2015

    The new recommendation for BRCA1 is oophorectomy at age 35, each additional year raises the ovarian cancer risk by 1%. For BRCA2 it's still 40y.

    I hope you both get negative test results!

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  • cajunqueen15
    cajunqueen15 Member Posts: 794
    edited August 2015

    Hi inks! Thank you for the information. While I've always know that my PGM died from ovarian cancer, I had no idea what that really meant until I was diagnosed. I see that you are BRCA1 and also in your 30's... is that something in your near future or have you decided against it?

    I called for the results yesterday hoping they would be in early with no luck. Even if I don't have either mutation, I'm a little worried about the increased risk because of the family history, however, I did learn that my PGM died at 58, not in her 40's as I had initially thought.

    Cancer is part of life and I understand that... I just never thought it would be part of my life in my 30's and I'm still struggling to accept it.

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  • inks
    inks Member Posts: 746
    edited August 2015

    Yes, I already had the oophorectomy last spring. As I was finishing up chemo one of my relatives was diagnosed with ovarian cancer stage IIIc, her mom had passed from ovarian cancer 6 years before. That and the results from the large canadian study were the main reason why I had the oophorectomy before age 40.

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  • cajunqueen15
    cajunqueen15 Member Posts: 794
    edited August 2015

    hi inks - how are you feeling after the ooph?

    I am STILL waiting. The results are now overdue.

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  • inks
    inks Member Posts: 746
    edited August 2015

    It's hard to say if the side effects I am experiencing are from oophorectomy or exemestane. I have joint and muscle pain (moving/exercise helps a lot), hot fashes (had those on tamoxifen too), excessive sweating (from exemestane I assume), hair thinning (minoxidil helps), crankiness and mood swing (that could be just my old bitchy self). The side effects may seem bad but I'd rather have them than cancer. Especially ovarian cancer since there are no good methods of finding it early.

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  • cajunqueen15
    cajunqueen15 Member Posts: 794
    edited August 2015

    I agree. I'll take pretty much anything to make it to see my children into adulthood. I'm already nuts, what's a little more crazy added in? ;)

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