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Questions regarding status change and mutations

ericalynn Member Posts: 21

I’m so new to this and my mind is still in overdrive. Everyday I come up with a new concern and worry. Recently, it is how common is it for Her2 positive to switch to her2 negative? Also, how do we know when we should get tested for things like oik3 mutations? I don’t even know what these things mean 🤦♀️
Did I mention I’m in overdrive?


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,509


    I don't have an answer for you on how oftena change in hormone profile occurs but when an area is biopsied, it is tested for hormone profile which may differ from the original breast tumor. When your mets were found, assuming you had a biopsy of the met/s, you should have received info regarding the hormone profile. For instance, when my bone met was biopsied it was virtually identical to my breast tumor and I was able to see that on the pathology report. As mentioned however, it is possible for it to be different but I can't tell you how common or uncommon that might be. Hopefully someone with more info can help you out on that.

    I have never heard of an oik3 mutation but I'm not a doctor. Have you had genetic testing? I've been living with mbc for 11 years and in that time genetic testing went from just BRCA 1 and 2 to over 30 possible mutations. Have you asked your mo about these things? He/she is most familiar with your individual circumstances. There is a lot to learn about mbc and many, many possible variations from person to person. Try to down shift and realize that you won't be able to learn/understand everything about your bc overnight. I've been at this for more than a decade and I am still learning! Lastly, though easier said than done, don't borrow trouble. Deal with what you know today and try to stay away from the “what ifs…" or trying to predict the future. It generally doesn't work and just creates undue stress and anxiety. Take care

  • ericalynn
    ericalynn Member Posts: 21

    thank you. I mistyped and I think it is called pik3 ( regardless I have no reason to believe I have any of this going on ) I just read about things and go down a rabbit hole. I recently did hear that it is uncommon.
    thank you again.

  • seeq
    seeq Member Posts: 1,047

    ericalynn - I'm so sorry you've found yourself in this situation, but also glad you found BCO. There is so much information and support here. The first few months are really a shock, but it will settle out.

    I will echo exbrnxgirl's advice to not borrow trouble. We have enough to deal with on a day-to-day basis without worrying about things that may never happen.

    I'm not sure of the source of your reading, but I will add that if you are consulting Dr. Google - save your sanity and stop. There have been such great strides in treatments - just in the last few years - that much of what you find is out of date. (OK, we all consult Dr Google, even when we know how bad it can be. Just take whatever you read with a grain of salt and check the publication dates.)

    Best of luck in your treatments and all you do.

  • parakeetsrule
    parakeetsrule Member Posts: 605
    I have the PIK3 mutation and from what I've heard it's pretty common. As far as I know there's only one drug that targets it now, Piqray, but there are many other treatment options besides that so it's not urgent to check. Your doctor can test for it pretty much anytime. Ask them about it and see what they say.

    And like everyone else had said, don't trust Dr. Google. One of the things I read at the beginning made me think I was going to be dead in three months. That was almost a year ago and didn't even apply to my situation!
  • ericalynn
    ericalynn Member Posts: 21

    thank you for your explanation. Also, I love your cancer is dumb and cookies are good.

  • parakeetsrule
    parakeetsrule Member Posts: 605

    Ha, thanks! :)