Genetic Testing with Ductal Carcinoma

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chiefpilotmom
chiefpilotmom Member Posts: 1
edited October 2020 in Genetic Testing

I am an "adopted child of the 50's," so I have no family history (and have no desire to open my birth records). Once diagnosed, I had genetic testing done. The doctor's PA called with the results and said only that my "genetic tests were clear." I asked for further definition and was told that I didn't 'inherit' my risk of breast cancer from a family member nor would I likely pass it on to a family member." I literally don't know what that means. I'm between a rock and a hard place with whether to do a lumpectomy with radiation or a double mastectomy and remove the chance of a reoccurrence. Anyone have any advice or comment? Thanks!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited October 2020

    chief - basically it means - don't worry about genetically passing it on to your daughter or son or grandchildren. But I don't see how this would impact your decisions about treatment for yourself. You could still have genetic anomalies that would determine what drug treatment might be best - but at this point you're not talking about chemo.

    But you need to provide lots more information for us to give useful comments.

    Are you saying you have only DCIS? What else is on your reports? Size, hormone positive or negative, Her2, Do you have other health issues you need to consider? Are you in an area where hospitals are overloaded with Covid cases? Do you have someone to help with your care if needed? Do you have insurance issues? How about job issues?

    Have you seen a medical oncologist yet? Or just a breast surgeon? Even with "pure" DCIS I consulted with an MO before I did anything. Or have you met with the radiation oncologist to hear his/her take if you go with lumpectomy?

    If you go to My Profile, you can add your diagnosis & treatment to date. You may want to consider posting under the "just diagnosed" section. You have a hard choice, but I don't know that genetics play a factor.

    I had DCIS and chose a double mastectomy - both gone & finished - no other treatment. Except that once you are diagnosed with breast cancer, you can never be sure it's "forever". I had a local recurrence at two years. Apparently a micromet escaped before surgery & showed up in a lymph node under my collar bone. Only then presented with IDC. Today after chemo & surgery & more chemo & rads & herceptin for a year - I have been NED for 6+ years (no evidence of disease).

    I'll look for your follow up since I too am in Texas. Good luck.


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  • OCDAmy
    OCDAmy Member Posts: 873
    edited October 2020

    I met with a genetic counselor who spent over and hour with me going over my results. I only had one VUS but she went over everything. I’d ask if you can speak with a genetic counselor.

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited October 2020
    Just to be clear, a mastectomy does not remove the possibility of a recurrence outside the breast.
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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited October 2020

    Peregrine - ABSOLUTELY you are correct - as I found to my amazement, And mine was called a "local recurrance" even though I no longer had breasts. I'm grateful that ...so far... I'm NED and I I didn't have mets.

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  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited October 2020

    MinusTwo, how did MO explained the recurrence in your node? Could have been undetected cancer cells that metastasized?

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited October 2020

    No Lilly - all the docs are sure that they got everything. There were large clear margins. And I don't have mets. Just one local recurrence to one lymph node. They really believe that one micro size particle escaped the ducts before surgery and landed in the lymph node under my collar bone - likely corroborated because it was IDC instead of the pure DCIS that was in both of my breasts.

    So with that IDC diagnosis & also now HER2+, I did have to have chemo. I didn't have pCR, so after ALND surgery, I had more different chemo. Then rads. Then hercetin for a year.

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  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited October 2020

    MinusTwo, so scary but I am glad it was local and you got in on time.

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