Thank you, that’s really helpful. I haven’t heard of the Predict score so I will definitely ask my breast cancer nurse about that.
Thank you x
That’s really good to know. Thank you x
Hi I have been on Tomoxifen for nearly 10 years and only had some hot flushes, not bad ones, and no other symptoms. Everyone is different and reacts differently to medications. The only way to know for sure what your reactions would be is to start on the medication. You can always stop taking it if you find that you are one of the (as I suspect) few who get side effects that cause real problems. As stated before it only tends to be the ones who get side effects that post on here, so you don’t get the posts of the many who don’t.
Hi. I was on for tamoxifen for a few months before being switched to letrazole and starting a stronger preventative drug called ambecaclib that has a lot more and stronger side effects.
I remember being on just tamoxifen (which I took late at night, as I’d heard you can effectively sleep through any symptoms). I felt practically back to normal, a month or two after radiotherapy.
I’m 43 now but was 41 then.
I remember being stiffer than usual from sitting and having the odd hot flush. However, I felt I was having menopausal symptoms earlier than normal but not that much earlier and also not that bad.
I also had monthly zoladex injections (I’ve since had my ovaries removed) and they increased hot flushes just after.
Re: the predict score I wouldn’t personally recommend it unless you’re low risk of recurrence. I am high risk and the scores (which don’t take radiotherapy into account) terrified me as it mentions your chance of survival 5 and 10 years later and mine were so low.
I was diagnosed august ‘21 and am not aware of any recurrence yet so I guess my odds are better than that predict said.
It definitely doesn’t bring ambecaclib into the mix.
There is a newer predict I saw posted on here which the nhs haven’t approved yet that is more up to date and seems to give people better odds x
Hi all,
I have been on tamoxifen for nearly 2 years, am going to be on them for 5 years.
I feel like I tolerate it well. I do have hot flushes and night sweats, but they’ve settled down.
I also get tired more easily but who knows if this is because of tamoxifen or radiotherapy or just the stress of having had cancer?
If you get bad side effects you can ask to change brands. I find that different brands have very different side effects.
I hope it goes well for you x
I’ve been on Tamoxifen since February & the only side effect I’ve had is night sweats - worst in the first 4 weeks but settled / bearable now.
I’ve only been on it 2 weeks and already had hot sweats and can feel confused. Mind you that might be my age🤣. I’ve also had headaches which I don’t usually have. Sleeping is not great either I wake up and can’t go back to sleep.
The sweats / sleep was bad for me for 4 weeks then calmed - I hope it does for you too.
1 Like
Thank you
I have been offered tamoxifen after getting extremely painful side effects from Letrozole which are still causing me joint and muscle pain 3 months after stopping taking it. I am currently worried about side effects from tamoxifen and told I am medium risk of cancer returning within 5 years. At age 70 should I put quality of life first?
1 Like
Hi mazzabayes, Only we can make that decision. I’m 76, haven’t really a clue how low/high risk I am, didn’t have chemo just 5 sessions of radiotherapy, so telling myself I may be low risk. I’ve chosen not to take Tamoxifen because I feel fit & healthy again now and prefer to feel like that & do not want to tolerate any side effects. I’ll have to face it if I have a recurrence, it’s just scary that if it comes back it might not be curable, which is what I’ve been told is likely if I don’t take Tamoxifen, but I’ve read on here ladies have taken it & it has still come back & some, not all, have suffered awful side effects in the meantime taking blockers & had a miserable time. We all have to go sometime! Whatever you decide I hope it works out for you.
The only side effect I have had on tamoxifen is night sweats - bad for 4 weeks but settled after that
You may have no side effects- everyone responds differently
Hi hiker50, Yes, I know lots of women don’t have any problems taking Tamoxifen, this is a personal thing with me, I never take anything, except an occasional Paracetamol. I’ve read up on all the side effects ‘that are possible, but unlikely’ but still can’t take it. I have considered trying it, but just haven’t got to the stage of actually doing it. Obviously, I really hope I won’t regret my decision.
We all decide what we are personally comfortable with and will never know how a different decision would have turned out, unfortunately.
I had my surgeon tell me I needed chemo for the best chance of survival (pre and post op) so mentally prepared myself for 10 weeks before seeing the oncologist & being told she was not recommending it. I was then told it was up to me 
I decided against based on oncologist’s justification for her suggested treatment with RT, herceptin & tamoxifen
If it comes back, I’ll always think I should have opted for chemo but I was told my prognosis is so good she felt the risks of chemo weren’t worth it
Let’s hope we are all lucky & don’t have any recurrences. I wish you all the best for the future.
1 Like
Hi @mazzabayes this is a decision many of us struggle with. I will be 69 in five weeks so roughly at the same stage of life as you. I have taken Letrozole for two years (of 5) but with some self-determined breaks during that time. I am lucky, I’ve never had the joint and muscle pain that you have had on it or hot flushes (never had those during menopause so I guess it figures) but I do get very bad periods of fatigue and brain fog. I argue with myself every day during the fatigue, whether to just stop it. There is a very long list of pros and cons that I tediously go through during this argument but it all comes down to one thing - if I choose to not take the drug and was to develop secondaries, could I live with my decision? Additionally, if I decided not to take the drug, would this desired quality of life be negatively impacted by fear of secondaries? If I could answer yes to the first and no to the second then I’d choose to stop. If not, in your position, I’d choose to give Tamoxifen a try with the option of stopping later. There is a large percentage of women who do stop, particularly amongst those of us later in life - and I may well become one of them - so you would not be alone in that decision. Ultimately no-one can foresee the future so it comes down to how risk averse you are.
Here is a link to a long consideration of this point that you might like to dip in to. I wish you strength and luck in making this decision.
1 Like
I follow this website a lot to see if anyone posts to say they chose not to take Tamoxifen, as I myself have chosen not to do, but the posts are rare. I haven’t read any where Tamoxifen has been declined and there has been no recurrence. I haven’t changed my mind about even trying it though, hate the thought of what it can do.
I think because the vast majority of women who take Tamoxifen are younger, mainly premenopausal, and therefore a) tend to be impacted more adversely by BC and b) are likely to have young families, they are more likely to take the “throw everything at it” approach so plough on even if they have side effects. Tamoxifen is older technology, works differently to AIs and has very different potential side effects to AIs, most of which are less impactful on a day to day basis so it would seem has a better take up than AIs. There is also the occasional thread on here involving women who have reached the end of their Tamoxifen programme and want to continue it because of the reassurance they get from it, so there is a very broad spectrum of responses to it. For what it’s worth, I think your decision to not take Tamoxifen is a very understandable and relatable one.
I used the new Predict app & taking Tamoxifen gave me a 1% better chance of survival over 5 years, I’ll be 81 then, so I’m just trying to stay optimistic & healthy.