Hello. My consultant has recommended that I take Tamoxifen but I have very mixed feelings about it. I’ve read about the side effects and am very concerned about them. I’m 43 and had a double mastectomy at the beginning of August. I had widespread DCIS in both breasts and they also found a 2mm area of invasive cancer in my left breast and one lymph node (they removed 3 lymph). My consultant is as confident as he can be that he removed everything so I think the Tamoxifen is just a precaution. I would be very grateful to know of other people’s experiences of taking Tamoxifen. I’ve read some threads on the forum that make me quite concerned about side effects. Thanks for reading xx
It’s important to remember, the kind of people that have no side effects, don’t usually post about it on forums like this. I’m still new to tamoxifen myself, so I can’t say categorically that I won’t have side effects but so far I feel the same as before tamoxifen.
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Hi @sdg23 has your consultant been through your Predict score with you? If not, it might be worth asking him or her to do that with you. It is just that, a prediction, not a surefire, guaranteed fact but it does give something objective to base your decision on whether to take endocrine treatment or not. No surgeon can say they got it all, only all they can see, as microscopic cells can travel at any time once the tumour starts forming and it is these that endocrine treatment is designed to stop growing. Not everyone has side effects as @kartoffel says and many SE can be dealt with by both drug and non-drug interventions. Having said all that, there is a percentage of women who choose not to take it or who give it up after a period of time so you would not be alone in refusing it. The only thing to consider is how you would feel if you didn’t take it and you had a recurrence. It’s a conundrum that many of us struggle with.
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I had 5 years of tamoxifen, which was the guidance at the time. I was 36. I had relatively no bother other than the odd night sweat, which could have been chemo related. I didn’t want to stop it, it felt like a comfort blanket. It is not for everyone, but I was very scared of recurrence and wanted to do everything I could to reduce that risk. Best wishes for your recovery.
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I’m following the Tamoxifen thread as I chose not to take it, but made this decision due to my own personal situation. My age is 76, had I been a lot younger I would probably have tried it before discounting it. I had a 31mm lump, so had a lumpectomy, 3 lymph nodes removed, then an excision as margins were not clear, lymph nodes clear. I did not need chemo, just 5 sessions of radiotherapy. My radiotherapy consultant recommended I take the Tamoxifen prescribed, but she said my prediction of a recurrence was only improved by 1 to 3% if I took it, so I decided I did not want to tolerate any side effects. I know there is still quite a high percentage risk it will come back for all of us. Yes, I’m terrified of getting secondary cancer, I could cope with primary cancer if it was the same as I have just experienced, as I think I have had it fairly easy compared to a lot of ladies. I’m trying to cope with the anxiety & fear of a recurrence, as this is really stressful & doesn’t seem to go away. I agree ladies only generally post on here if they are having problems with Tamoxifen, so many must be fine on it, so it has to be a personal choice.
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Hi there,
I started taking Tamoxifen at 43 following my diagnosis (ER & PR positive mucinous carcinoma & LCIS, SMX & radiotherapy). I’ve been on it a year and haven’t found it too challenging.
I had some initial gastric side effects but am able to manage those. I do get muscle aches but staying active really helps. And I haven’t suffered with any of the more significant side effects. I’m pleased to say it hasn’t affected my life in the way I was very scared that it would.
Xxx
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I’m 46 and been taking Tamoxifen for two and a half months. After a couple of weeks I had a few days where I struggled to concentrate, kept forgetting things and couldn’t seem to get the right word out at times. It could have simply been adjusting to the medication but as I didn’t want it to interfere with focus at work I changed the time I take it from lunchtime to 5pm and since then no issues at all. I have also had to change brands and it hasn’t made any difference. x
As @kartoffel has said, I think the people who haven’t really had any trouble with Tamoxifen generally dont say much on here. I took it for about 1 year before being moved to Letrozole (because I’m now officially fully in menopause) and I have to say the only ‘issue’ I experienced was hot flushes. I’m quite open, probably annoyingly so, about my situation so I just explain I’m having a flush and whip my fan out and get on with it. I did dabble with Gabapentin to try to settle them but I found I had other unsatisfactory side effects with that so I’m just going to ride it out. I was 39 at the time of diagnosis and have a young boy so to me it’s totally worth persevering with X
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Thank you very much x
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.
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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?
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