Hello AliceMG, 

A warm welcome to Cancer Chat. Congratulations on reaching that important milestone: coming off Tamoxifen after 5 years taking the drug! It's great that you never suffered major side effects whilst on Tamoxifen. I hope that it all goes well as you stop the drug. 

You have come to the right place to talk to other ladies who have also stopped taking Tamoxifen and I hope they will be along shortly to share their experience with you. I had a little look on the forum for you and found quite a few threads which might be relevant to you from some of our members who have also come off the drug in recent months. For example, you might be interested in reading [@Zetgirl]‍ 's thread here , [@Juls]‍ 's experience here or [@Lizzell]‍ 's account here.

I hope it all goes well for you and that the transition into a Tamoxifen-free life goes smoothly! 

Do come back here and let us know how it all goes!

Best wishes, 

Lucie, Cancer Chat Moderator

Sounds rather familiar.  I am 52. I had HER2 breast Cancer five years ago - chemo, double mastectomy, Herceptin and a hysteremctomy two years ago.  Like you I have gained weight around my middle - Jo Wickes hasn't helped!  I stopped taking tamoxifen about two weeks ago and my hot flushes have virtually disappeared overnight which has been fantastic.  But I have been feeling very tired and my joints have started to ache a lot.  I have not been sleeping well either.  I wake up a lot in over the course of the night in pain.  So I would be interested to hear how you're getting on.

Hi 

I am also facing the prospect of coming off Tamoxifen, after 4 years - as recommended by the onco who was adamant about this after hearing of my uterine thickening, bleeding, cysts that i'd been under routine surveillance for over the last year or so (although the docs weren't too concerned about these, saying they are common in women taking tam and mine are within the 'normal' range, with no complications). Problem is that i have a strong history of close family bc, so am nervous about stopping tam. and taking nothing (which is what he advises, in that the risks of continuing T outweigh the benefits, and that i don't need to take any further hormone treatment whatsoever (gulp!)). Not helped, btw, by him saying my bc was 'insignificant' bec I was early stage. 

I don't know how to make the decision - tam vs non-tam, tam trying a different brand (GPs laugh at this one, but pharmacists nod wisely and try to help, in my experience), tam vs anastrazole, or leuprorelin. How am i to make this decision? The google searches throw up a lot of US nonsense, and NHS website isn't specific enough. Onco tells me to research this myself, and give him the answer in a couple of weeks' time. 

Is it reasonable to ask for a second opinion if after going back to the onco he proves unhelpful?  Or can i just ask for a 2nd opinion now? 

thanks, PrettyKitty