Taken off of Tamoxifen

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pollyana
pollyana Member Posts: 6
edited March 2014 in Breast Cancer #1
My oncologist took me off of Tamoxifen after 1-1/2 years. He said that recent studies have shown that the med will not lower my risk of recurrance since my tumor was ER negative with high HER2. I am glad to be off the med since it had caused a weight gain, but feel very uncomfortable...like out at sea without a boat. Does this sound logical, and should I accept it or should I get another opinion. I really love my oncologist, but I feel so vulnerable all of a sudden!

Thanks for your help.

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  • jeancmici
    jeancmici Member Posts: 665 Member
    #2
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    >>My oncologist took me off of Tamoxifen after 1-1/2 years. He said that recent studies have shown that the med will not lower my risk of recurrance since my tumor was ER negative<<

    Studies go back longer than thatsaying the same thing. I would not worry because most oncologists would not have put you on it to begin with - usually not given to estrogen negative women.

    I can understand your feeling tho' - one day something is worthwhile - the next it's not. I remember the radiologist who ok'd my Premarin as I checked for a second opinion after my primary care MD recommended. Breast surgeon said - Oh, yes, too - and 9 1/2 years later the same radiologist said - stop the Premarin today - as she looked at my tumor on the x-ray.

    Good Luck and try to be positive which is easier said than done! I know!
  • Sandis
    Sandis Member Posts: 85
    #3
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    I have ER negative tumor and was also advised against tamoxifin. The research is pretty clear that it isn't helpful.
  • JKAlley
    JKAlley Member Posts: 84
    #4
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    jeancmici said:

    >>My oncologist took me off of Tamoxifen after 1-1/2 years. He said that recent studies have shown that the med will not lower my risk of recurrance since my tumor was ER negative<<

    Studies go back longer than thatsaying the same thing. I would not worry because most oncologists would not have put you on it to begin with - usually not given to estrogen negative women.

    I can understand your feeling tho' - one day something is worthwhile - the next it's not. I remember the radiologist who ok'd my Premarin as I checked for a second opinion after my primary care MD recommended. Breast surgeon said - Oh, yes, too - and 9 1/2 years later the same radiologist said - stop the Premarin today - as she looked at my tumor on the x-ray.

    Good Luck and try to be positive which is easier said than done! I know!</p>

    I was just diagnosed in Dec., am also er neg. and I was never put on tamoxifen and never will be. It was my understanding that tamoxifen is a type of hormone therapy, and because of er/pr neg, my cancer wouldn't respond. I would say though, if your feeling uncertain, talk to your dr. about your feelings, and never hesitate to get a second opinion if it makes you feel better.
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #5
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    Just read this week Tamoxifen actually stimulates the growth of HER2neu + tumors so you're lucky your onc knew to discontinue it! You might ask him about arimidex or megace as a replacement treatment. God bless and good luck. hummingbyrd
  • kcnahm
    kcnahm Member Posts: 2
    #6
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    I agree with hummingbird, actually I wa er neg, but progesterone positive and was started on tamoxifen. However after using lupron to shut down ovaries, I've been switched to femera which is an aromotase inhibitor and does well with the her2+, I'm also her2+ so I'd ask about those drugs. good luck

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