wanting to make the right decision

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teelee
teelee Member Posts: 37
edited June 2014 in HER2+ (Positive) Breast Cancer

I had a lumpectomy in Feb./09. Results of the biopsy said ER/PR + HER2 +. Fish test came back HER2 negative. The oncologist has had it retested with the results coming back they  "think" the tumor is low grade. He has now sent it to another city for retesting again. Since there is a huge difference in treatment depending on the HER2 results I want to make the right decision. The oncologist is leaning towards just radiation and tamoxifen and forgoing chemo and herceptin. I want to do everything I can to fight this disease, but taking chemo and herceptin if not needed would be foolish, but in the same breath if it turns out that I should have gone that route and didn't ......??? He did suggest I pay to have the oncotype DX testing done, but didn't think that would really be necessary.

I am really uncertain what I should be doing. Anyone been in the same situation or have any thoughts it would be greatly appreciated.

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  • orange1
    orange1 Member Posts: 930
    edited April 2009

    From my limited understanding of how these things are evaluated, grade is the least reliable amoung the prognostic indicators for breast cancer (has the most variability depending on who looks at the tissue and other factors).  So if it were me, I would have them repeat the Her2 testing and do the oncotype.  Both of these are minimal cost compared to a year of Herceptin and Chemo, and more importantly, the potential impact on your life.  Not getting Herceptin if your tumor was really Her2+ is not a risk anyone should take.

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  • helena67
    helena67 Member Posts: 357
    edited April 2009

    Hi Teelee,

     I just wanted to say that I totally agree with orange1. You should get the most detailed information so that you can make the best treatment decisions together with your oncologist.

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited April 2009

    I agree too.   Also, even minimally positive for HER2Nu, I still might consider getting the chemo/herceptin.   I have heard several time of the cancer turning Her2nu positive.    I am only very minimally ER+ (5 percent) but I am still taking tamoxifen anyway.   I am for throwing whatever you can at it.    

    Jennifer

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  • teelee
    teelee Member Posts: 37
    edited April 2009

    Thank you all for your input. I had kind of made the decision that I would wait to see what the next test said from the other city. If it was consistant with the other results (the false positive) I was also leaning towards just tamoxifen and radiation. I am really having second thoughts now. This is getting so frustrating. I found my lump, thought I was doing everything right. Now over 2 months later I'm still waiting for something else to be done.

    I think the oncologist must be quite unsure about diagnosis if he is getting it tested yet again. If this test comes back unclear I think I may pay for the oncotype dx testing. My only concern is that with the luck I've been having it will come back borderline! Also, all this just means more waiting for me and that makes me nervous.

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