Tamoxifen stories (to take or avoid?)

I would like to hear any (positive or negative) stories about how Tamoxifen has affected you since starting it. So far I’m reluctant to begin taking Tamoxifen due to the debilitating side effects women experience. Hopefully everyone will gain a better knowledge and understanding of this drug by sharing their experiences.
I have invasive Grade 3 DCIS, HER2+ I have had chemotherapy FEC + PTH, with mastectomy and DIEP reconstructive surgery on 9/1/18. I am 46.
Feeling very confused?!! …



I am 59, was diagnosed in 2016 and finished active treatment in January last year.  I have been on tamoxifen for 14 months now.  Apart from a lovely hot flush about an hour and a half after I take it in the morning, and several smaller ones throughout the day I dont think I have any significant side effects from taking it, and certainly not enough to make me think that I will not take it any more, it is hopefully keeping me safe froma recurrence.  When I first started taking it I had a couple of weeks of feeling very sensitive and would cry if someone even said something nice to me but that passed.  I dont know if because I am post menopausal that I have been ok on it so far.  I am on it for 10 years.

Hi Andi,


Here’s the thing about Tamoxifen, that I’ve gleaned from the time I’ve been on here. Some people have life quality changing bad side effects (and stop taking it), some have no side effects at all and hardly even know they are on it. For some there are a few side effects which stay with them but they are manageable and for some the side effects disappear over time. However, there is no way of knowing if you will be one of the ‘lucky ones’ or not without actually trying it out.

There are quite a few tamoxifen threads on here, if you do a quick search you will find many still active which might give you other opinions (in addition to anything added here), but bear in mind every single person reacts differently to it and just because one person has problems doesn’t mean you will. Also, bear in mind that often people post on forums because they are having problems, and so it becomes a self-selecting group of negative stories.

I personally can’t see why not simply try it - and stop it later if you feel you want/need to, or deal with any side effects IF they do occur. I have my own, unfortunately, negative story about tamoxifen, which I’m not going to detail here as it was rather out of the ordinary and I don’t want to colour people’s views…BUT I did start it and give it time to see how it went for me. I no longer take it (I was 48 yrs at diagnosis). I wish however that I had been able to continue with it :smileyfrustrated: There are plenty around who have unpleasant stories, and plenty who have stories of positivity (they will be along shortly :smileyvery-happy:), but I’m not sure if they will help with a decision ultimately as your body is your body and how you respond is an unknown right now.


I can entirely see why you feel unsure and confused, it is a common feeling which I held myself and others have expressed. Have they offered that you start before surgery?


Charys x






Hi Andi, i would say why not give it a go and see how it works for you? The list of side effects are pretty impressive I agree and yes some ladies do have severe reactions to it but the majority don’t and you would be extremely unfortunate to get them all!


I started on in April 2015 and did without hesitation , I was just so grateful to have something going forward that would help me keep this bugger at bay that I questioned nothing!  I do know all too well it’s not a miracle drug , my own mum died from breast cancer inspite of being on Tamoxifen for 5 years but when she sought help her cancer was very well established which had lessened her chances of a good outcome but it still helped keep it at bay and give her some more good years. 


My own experience with it was nothing much to report to start with,  a few flushes, tiredness and general aches and pains initially , I got to over 2 years before it started to effect my knees to the point I could barely walk a few yards without pain so I was forced to take a break which im 3 months in to now with little improvement so I’m contemplating going back on it, it gives me an extra 1% protection against reacurrance according to the NHS predict website , nothing much in the grand scheme but it still niggles away at me all the same! 


We all have to live with the what ifs, would be lovely if we could be given a 100% reassurance that we were cured for ever, the important thing is to be at ease with your decision Xx Jo 

You are welcome Andi, I think you have a fantastic attitude too and honestly…it’s so refreshing that someone really wants to hear opinions with openness. Would be really interested to hear how your oncologist chat goes. X

Google is a wonderful thing, Mai!
For me, I avoided google like the plague when I was first diagnosed as I didn’t want to scare myself & in hindsight, I’m glad I did. The only downside was, I did not find the forum until after surgery & final results, although I do remember the bcn recommending it.
But, as things settled down, when I knew where I was with it all, then I became curious & was quite happy to google anything bc related, so here I am!

I certainly found the app a good place to start, as you can go at your own pace. For me, I have found it great to use, especially as my job involves a lot of driving & getting in & out of the car. I rarely get back pain now & flexibility is much better.
ann x

Also, thanks for the links, Mai. I did ask the oncologist about aspirin & he checked whether I was legible for the ‘add aspirin’ trial, which I wasn’t, but never mind!
He was fairly non commital about it.
However, I will consider whether to do it. In view of the slightly increased blood clothing risk, it does make sense anyway.
ann x

Wishing you all the best for tomorrow Andi, you will soon be out the other side and back Here chatting! Xx