2 sisters with bmx and third seeking opinions

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Mab60
Mab60 Member Posts: 487
edited August 2015 in High Risk for Breast Cancer


Hello. I am new to BCO having just had my bmx in June of this year diagnosed from an annual mammogram. I received a low onco score of 10 and bypassed chemo. Had a rads consult this afternoon and rads was not recommended. I started femara 0729 and have tissue expanders in place.

My youngest sister is a BCO member. She had her bmx at 46 four years ago. She had a difficult time with her chemo treatment. Roseann is rose50 on these threads. She lived in Chicago during that first year of her diagnosis so her sisters in Atlanta did not see the difficult times she went through on a daily basis.

But my third sister who has been to every appointment with me since June has witnessed my emotional roller coaster as I have worked through identifying my treatment plan. She has a history of 5 biopsies, none identified as malignant, dense breasts, history of ADH, 58 years old and now 2siblings with breast cancer. She met with an oncologist who told her even if she were put on meds, her chances of getting cancer would still be very high. I believe somewhere around 60% was quoted.

Rose50 and myself both tested negative with genetic testing. Anyone out there that would be similar to my sister that has some strong negative things that could possibly lead to a cancer diagnosis down the road that has moved forward with a bmx with no cancer diagnosis? Or does anyone have any opinion one way or the other? Any comments would be appreciated



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  • cymom
    cymom Member Posts: 54
    edited August 2015

    When you say the genetics test was negative, do you mean BRCA or also the larger panel?


    With a family history this strong, and a prophylactic mastectomy on the table, I would pursue additional genetic tests in the hope of pinning down that risk number a bit better

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  • Mab60
    Mab60 Member Posts: 487
    edited August 2015

    both sisters had the entire panel and it was negative. The genetics counselor at the time that this does not mean it is not hereditary. It possibly means there are genes that have not been identified that are a risk for breast cancer that we are positive fo

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  • Ddw79
    Ddw79 Member Posts: 533
    edited August 2015

    Doesn't that sort of " beg the question ?

    I am in kind of the same boat as your sister with strong family hx and now ADH. Aren't there always genes out there waiting to be discovered? I feel like we know that but it doesn't help us make very hard decisions

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2015

    mab60 - I am curious about the specifics of your cancer and your sister's - were the receptors and Her2 status the same? I agree that there is likely a genetic link that is as yet undiscovered - but good that you both were tested. Something to consider is Mammaprint on both of your tumors - it is a genetic assay like Oncotype Dx but has a 70 gene panel, which is three times as large as the Oncotype Dx panel. I wonder if there are genetic similarities between the two tumors. For your other sister, the ADH and family history is probably enough to have a prophylactic surgery covered by insurance, is she considering doing that as a pre-emptive solution? There are lots of people who do prophy BMX, type PBMX into the search box from the left side of the page and there are a bunch of posts - I am sure there are posts with well though out reasoning that might help your sister decide what to do. Good luck!

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited August 2015

    If you have not found the FORCE (Facing Our Risk of Cancer Empowered) organization yet, take a look at their website. As a resource for the hereditary BC community, they have many participants who have asked the same questions. There are also local support groups for those who are interested.

    Keep in touch with your genetic counselor since more information is coming out regularly.

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