Forum Discussion

Bear1966's avatar
Bear1966
Member
13 days ago

Finishing Tamoxifen?

I saw my oncologist last week and was told I can come off Tamoxifen now, having been on it for 5 years. I stopped taking it 3 days ago.   Do I start to feel better gradually?  I'm not sure what to expect now.  I didn't think to ask her what happens now that I stop taking it. 

 

 

1 Reply

  • Risha_BCNA's avatar
    Risha_BCNA
    Community Manager

    Hi @Bear1966! 


    I work on the Breast Cancer network Australia Helpline so thought to jump in with some thoughts while we are waiting on responses from others within the community. From what we have heard from people who have called our helpline - we have gathered that the experiences after stopping treatment can be quite varied. Some people have mentioned their side effects (if any) slowly improving or going away altogether (such as joint pain or low mood) whereas the others did not notice any 'withdrawal' symptoms as such.

     
    It would certainly be worthy of a chat with your oncologist in case there is a review appointment coming up in the near future, or you could perhaps discuss it with your breast care nurse or GP even. 
    I found an old thread which discusses the same topic which I am pasting below:

    What to expect when coming off tamoxifen - your experience? | BCNA Online Network

    The below articles explain Tamoxifen and it's side effects very well. Both are from trusted sources- us (BCNA) and Breast cancer Now (A UK based breast cancer organisation):

    https://breastcancernow.org/about-breast-cancer/treatment/hormone-endocrine-therapy/tamoxifen

    https://www.bcna.org.au/resources/side-effects/side-effects-by-diagnosis-or-treatment/side-effects-of-hormone-blocking-therapy

    It is worthwhile considering if you were having any side effects and and assessing how severe they were, when you were on the medication, and then possibly maintain a weekly log to compare how any symptoms may settle down over a few weeks/months? Or, if you notice any new symptoms crop up (hopefully not)? The first article says that Tamoxifen can be stopped after the required course and does not necessarily need to be tapered down. 

    Hope these articles provide you with enough information to have a robust conversation with your doctor about 'where to from here'. Most importantly though, please accept our Heartiest Congratulations for completing that very long treatment course! You are most welcome to call us on 1800 500 258 to have a further discussion. All the best with your health and beyond! Risha_BCNA​ and Team BCNA