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suki1724
suki1724 Member Posts: 60
edited May 2016 in High Risk for Breast Cancer

I am positive for PALB2, ATM and P-ten. There is BC in all of the women on my mom's side, and colon cancer. I'm curious about risk reduction with bilateral mastectomy, I think I read that it reduces the risk by 90%, so there's still a 10% chance you could still get BC even after a mastectomy? How is that possible if you have no breasts? Do you have to continue with screening after a bilateral mastectomy, if you are high risk? Sorry if it's a dumb question, I just found out my results yesterday, so I'm in the "info gathering" phase, and will hopefully get an appointment set up with a high risk oncologist tomorrow. I'm having a breast MRI on Tuesday and I'm DREADING IT!

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  • Momof6littles
    Momof6littles Member Posts: 184
    edited May 2016

    I just spoke to a breast surgeon about some of this. According to Dr. Jaskowiak at the University of Chicago, the 90% number comes from a big Mayo Clinic study. Reconstruction back then was leaving tissue behind and that is why there was sometimes cancer even after the mastectomy. She stated that these days, the number is closer to 100%. My local surgeon stated that some breast tissue can be left behind, so there is still a slight chance. The other caviat is that they could have missed a primary cancer at the time of the mastectomy. I look at it this way, 10% is way better than the alternative risk. And better than the standard population risk (13%).

    I don't know about checkups afterwards. I'm still looking into it.

    Good luck with your MRI.

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  • suki1724
    suki1724 Member Posts: 60
    edited May 2016

    Thanks for the response! My ENT is at University of Chicago. I'm in the NW burbs. I'm thinking of heading to the high risk clinic at Northwestern, they also have a high risk gastro clinic, so i'm just trying to figure out what to do first.

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  • dtad
    dtad Member Posts: 2,323
    edited May 2016

    I agree and this is why I think its so important to have a skilled breast surgeon rather than a general surgeon. Good luck to all

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  • suki1724
    suki1724 Member Posts: 60
    edited May 2016

    I just called genetics to see how to get set up with the high risk oncologist and was told that a "nurse navigator" will be calling me.

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