Long term "high oncotype test" survivors

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Comments

  • scrafgal
    scrafgal Member Posts: 413

    My oncotype was 46. I felt a sense of utter doom as I read the report. I am now almost 8 years cancer-free.I have not visited this site in a few years but nosed around today. I didn't want to leave without giving someone hope!

  • emily23
    emily23 Member Posts: 1

    Hi,

    My oncotype score was 51 and I had 3 positive nodes !! I had a lumpectomy, 4AC 12Taxol and 20 rads. Ive been on anastrozol for 3yrs, and it is giving me lots of bone pain, hair loss night sweats ETc. But Im 4years post diagnosis . I hope all my high oncotype pals are doing well.

    Regards

    Anne

  • pneuma
    pneuma Member Posts: 205

    Hi how do you get this test? I had my surgery this month, finished my chemo, I don't know my oncotype. And why does my onco seem to not have me this test? When are you supposed to have this tested?

    I had my genetic testing this month too, but I still have not heard about my results.

  • maggiehopley
    maggiehopley Member Posts: 148

    Pneuma- I believe you were Her2 positive, as was I. They do not do oncotype for Her2 positive, because that type of breast cancer always gets chemo. The purpose of oncotype is for ER+/PR+ to see if they need chemo.

  • pneuma
    pneuma Member Posts: 205

    Oh OK thank you so much. I wonder if I am eligible for the test now. before surgery I am ER+ PR- HER2+

    After surgery I am NOW - ER+ PR+(1-5%) HER2 is equivocal so they did a FISH test and the result is negative. From my research it means I am now HER2-

    I told my onco that and she still put me on kadcyla which is a HER2+ treatment. Her reasoning is that since my treatment started with HER2+ she's still treating it like it's HER2+. Like what the hell? From my research, it seems from my pathology result putting me on any Trastuzumab which is what kadcyla is, won't do anything.

    I think I need to say something about this because I feel sore in both legs especially at night and when I stand up and walk I feel like an 80 yr old!! And that's only from my 1st treatment.