ER positive/HER negative breast cancer, struggling to decide whether to take Tamoxifen or not!

Hello, 

I am 2 weeks post single mastectomy, recovering very well and had the best news that the cancer has not spread and I do not need chemo or radiotherapy. I feel incredibly grateful  

I have been recommended to try Tamoxifen but really swaying towards not taking it. I struggle to find any real research that shows the actual benefit or success rate and I was told it’s likey 1 in 100 chance of helping by my consultant. 

I am really fortune that I managed to work out right up to my surgery and have recovered very quickly so feel that taking something that would now make me start to potentially feel ill doesn’t sit right with me. 

I have thought about trying it to see if I get the obvious side affects but I more worry about the silent side affects that you won’t know about until it’s too late.

    • Hi , there is a Predict tool that you and your consultant can use . I find it odd that your Consultant has only given you those odds of it helping . Please check again . The reasons that I say this is twofold . You are probably pre menopausal if they’ve offered you Tamoxifen . I was diagnosed 19 years ago with hormone receptor positive breast cancer . As I was low risk , grade 1 , it wasn’t deemed necessary to put me on an aromatise inhibitor ( they would have offered it now ) fast forward 19 years and the cancer is back in the same breast . It’s your choice of course but please research it x  
  • Offline in reply to LCR

     Sorry to hear your cancer has come back. I have done lots of research and there is no conclusive answer to how successful taking it will be. There are women who take it and it comes back and those it doesn’t, guess it’s the same as why we get it in the first place, there is no real reason. 

  • Hello 

    I’m 3 years in tamox I hate the drug side affects are horrific after a few months I started off ok but after 6 months they started , I’m having relief now thankfully they are wearing off 

    but I take them cause I feel if I didn’t I’d risk it coming back 

    good luck on making the decision x 

  • Offline in reply to laraj

    Yeah you want to do everything you can to make sure it doesn’t come back but at the same time you need to have a good quality of life. I have been so incredibly lucky that I have not been ill at all I think that’s my biggest fear is to start to feel ill when I’m body has coped amazingly well. 

  • Hi T333MYJ,

    A very warm welcome to our forum. 

    Sorry to play Devil's Advocate here, but who is to say that you won't become ill, if you don't take Tamoxifen? It is worth having a serous discussion with your care team, before you reach a decision that could certainly change the quality of your life.

    The Predict tool, that LCN mentioned, was updated in spring, last year (2024) and "it uses an updated algorithm. based on more recent data, which shows that people survive longer. It also factors in harms from treatment and offers more personalisation". Take a look at - breast.predict.cam/tool

    You might find it useful to go through this with your consultant, before reaching a final decision. 

    Kind regards,

    Jolamine xx

  • Thanks very much that’s a great tool, no one can tell for sure if you will or won’t get ill whether taking tamoxifen or not. 

    My consultant had said taking tamoxifen success rate would be 1 in 100 for me so very marginal & that tool I used came in at 2% so I will take my chances I think & live as heathy & happy as I can. 

  • Hi T444MYJ,

    I'm glad to hear that you found the Predict Tool helpful and that you have decided to take your chances. It doesn't sound as if Tamoxifen would make a great deal of difference to you. I sincerely hope that this turns out to be the correct decision for you - if only e had a crystal ball at this stage!

    Do please keep in touch and let us know how you get on.

    Kind regards,

    Jolamine xx

  • Thanks so much for your help. I feel incredibly lucky and grateful that I am in the position I am in.