Breast Cancer Haven
2,348 members1,277 posts

Tamoxifen

I’m about to start taking Tamoxifen, which I’m dreading, and wondered if any of you lovely ladies could share your experiences with this drug.

How quickly did you start to experience side effects?

What side effects did you have?

How did you manage them?

Is there a best time to take the drug, morning/evening?

Have you put on weight?

It’s the hot flushes I’m dreading the most as they have been awful post surgery.

I know we are all different, but any help you can give me to put my mind at rest, any tips etc, would be appreciated.

27 Replies
oldestnewest

Hello Titch, I hope that starting the tamoxifen means that you have come through the turmoil in tact? Not an easy journey x Anyway, I started tamoxifen last November. It’s been okay really.. could be worse. I take mine at night. I do get a hot flush in the morning and I find at times of anxiety I will flush again but other than that it hasn’t been too bad.

I’m afraid I cannot lie about the weight gain, however I did comfort eat on first diagnosis that I need to get rid of! Mostly gathers around the middle section! But I’ve also read some people don’t get that so you may be lucky.

Good luck to you lovely, I’m sure you will be fine xxxx take good care xxx

1 like
Reply

I am going to follow this as I will surely be starting my tamoxifen soon as well. I've read previous posts about experiences but I am curious as to how everyone has fared since or what the recent experience is.

I will be 54 in a month so I am at the menopause stage and have felt what I think are hot flushes. They don't bother me. What I am dreading is the affect the drug may have on my nerves as I do already have a muscular neurological disorder.

Reply

I was 52 when I was diagnosed with BC, as I had started menopause already was put on letrozole instead of tamoxifen, I have been taking for 3 years with very little side efffets, my husbands cousin was similar age but premenopausal went on tamoxifen some years before, she has suffered some side effects, she has had both her eyes done for cateracts which I was really surprised was as a result of the tamoxifen! She is only 59 now.

I have been taking my tablets for 3 years now, but I know some people have changed from my type of tablet to tamoxifen if they don’t tolerate it etc.

Sometimes different brands can make a difference if you do get side effects, so that is worth a try.

A friend of mine has just started her tamoxifen and is finding hot flushes quite bad, but there again another friend is just going through menopause and finding them awful as well, so it’s something some people get worse than others sadly!

Good luck deb xx

Reply

I started tamoxifen about 18 m0nths ago. I take it at night and yes the hot flushes aren’t great but then I do also live in Queensland Australia 😆 and yes Ive gone up two dress sizes but can’t really say if it’s the drug or the fact I had to give up work. Had my two year check up mammogram and ultrasound today and all good so really can’t complain. Hopefully you won’t find it too horrible either.

Reply

Hi Titch, for us ER+ve's, the Tamoxifen really improves our chances of leaving behind cancer. I'm grateful for it! Have been on it for 9 months. A few wee side effects at first, but I've actually lost 18kgs since starting it. Not too bad on the hot flushes, maybe some sleep disturbance? I switched to taking it in the morning, and that improved a bit.

Everything else has been fine. Goodness knows what happens after a few years? But all good so far :) Think positive (I know you surely have been so far!!) It may well be perfectly fine.xx

1 like
Reply

Hi Titch....I am also ER+, I'm only 42yr and a good 10yrs away from menopause ,I was diagnosed 8th June 2018, so pretty new to all this as well, so I've been taking my Tamoxifen for about 7-8 weeks ,at the beginning I got a tender bloated tummy but after a week or so it settled I was also given the advice from other ladies on here that taking it at night also helps, now no weight gain as yet but I do try to watch what I eat, I've cut down on the red meat, I don't drink or smoke, I try to excercise where possible but just finished my Radiotherapy a week ago and it's made my armpit quite sore so avoiding excercise at the moment....now no hot flushes during the day, but do get a couple at night ,I just kick the duvet off me for a couple of mins and that seems to help...apart from that and having no periods I seem to be getting along quite well with my Tamoxifen....any other questions don't hesitate to contact me.xx

Reply

Hi Titch, I'm also ER+ I was diagnosed in June 2012, I had chemo followed by radio, was meant to be on tamoxifen for 5 years, but as I was diagnosed when I was 46 my oncologist has told me I will staying on it for 10 years now as the can't be sure if I have been through the menopause yet, I do suffer from hot flushes because of the tamoxifen but other than that I have had no other problems, I feel like the tamoxifen is my security blanket and that they are keeping the cancer away xx

1 like
Reply

I liked your reply to Titch .....at last someone who was diagnosed in their 40's....there is not many of us!

1 like
Reply

Hi Titch I was diagnosed at 48 and have also suffered for years from pcos. So when I had my coil removed I had horrendous periods again so I started tamoxifen before radiotherapy. For me it didn’t agree with me at all. But it was more the mental state I was in it was horrendous. I was taken off for 2 weeks to see if it improved and after 4 days back to my old self. So had to have both my ovaries removed and now on anastrazole it is killing my bones but my head is ok so for me that is a better option. Good luck x

Reply

Hi Titch, I have been on Tamoxifen for about 8 months now and like you was absolutely dreading it. I have never taken any drugs for anything. TBH its not been that bad. I was pre- menopausal. Have no idea where I am with it all now. Get the odd mild hot flush but nothing too horrendous. Weight wise, again I was already packing a few pounds too many so I just started doing lots of exercise. Its taking its time to come off but it is shifting. Best of luck with it. Hope all goes well. ;)

Reply

Hi Titch I took tamoxifen for 5 years and now I’m on letrazol I’ve been taking this for 3 years x I did get hot flushes x thinning hair x weight gain x the aching joints I always put it down to side effects x and the weight gain x so I went to slimming world and lost 3 1/2 stone x when the joint pain got worse I did eventually go to the doctors and turned out I had severe arthritis and needed a hip replacement x so please listen to your body and check out what you think are side effects x now a year after hip replacement I feel great x good luck on this journey x this certainly makes us survivors stronger x sending love 💕

1 like
Reply

Ha, Vgrady76, I'm another one! I was 44 when diagnosed stage 3 last year in April. Harrowing stuff at the time. I actually wonder if my body has been awash with a leetle too much estrogen all my adult life (endometriosis, early breast cancer...), and having the Tamoxifen feels ok! Hope there aren't horrendous side effects that wait and kick in after 5years!!

Reply

Hi....it's vgrady76, yes getting diagnosed in your early 40's is a total and utter shock, mine was stage 2......like you I am coping with the Tamoxifen quite well so far so good......didn't want anymore children so the negatives of taking it didn't bother me, oh and my periods have stopped, but I'm still trying to get my head around it all, in some weird way I just feel like damaged goods that's the only way I can explain it! X

Reply

damaged goods is a tough feeling. We HAVE been damaged - there's scars, one less boob, side-effects, cording, possible lymphodema and the ever-present fear of return, that's all damage, right enough. Also more 'whole' in many ways too. More empathy for other people going through devastating times, a perspective on life that's different and more mature than before. And - just quietly - I'm really looking forward to my reconstruction and lift on the other side. My husband chose to leave our marriage just as my treatment was finishing, so new boobs could be helpful going forward in life! I was actually 43 when diagnosed, I forgot! A 4 year old and 6 year old at home. Someone who can cope with all these 'cancery' challenges is a person worth knowing - like you :)

3 likes
Reply

My mouth dropped open when I read about your husband, well I'm gobsmacked!! Like you said onwards and upwards , all the negatives that go with BC I also have all the fears that go with it, I'm so happy for you to be getting new boobs, that is brilliant you show that rotten husband you don't need him, and of course your children keep you busy as well, mine are a little older that yours 16yr and 11yr, I also only had Lumpectomy but the scar goes right down the left side of my boob near my armpit , once my boob is in my bra you can't see it, so glad you messaged me, I've just finished my RT and feel a bit sorry for myself and a bit in limbo xx

Reply

Diagnosed at 43. 6 - 12 months before side effects kicked in. Weight gain, nausea, fatigue,mood swings, but only few months left now before 5 yrs is up. Been dieting to lose weight, very low calorie intake for it to work plus exercise daily. Keep an eye on your weight as we all know it increases risk of recurrance. Good luck x

Reply

Thank you.

Reply

Hi. Firstly good luck! I’ve been taking tamoxifen for 5 years now. I have found it ok with no side effects other than it being harder to lose weight. I take it each morning. Hope you find it easy too xx

Reply

So do I, thank you.

Reply

Hi Titch

I read your post with great interest as I got my Tamoxifen yesterday and need to start taking it.

I have also been dreading it and all the replies to your post have been so helpful.

I am 49 but not in menopause yet, so may be on the Tamoxifen for 10 years.

I just wondered how you are getting on with the Tamoxifen so far?

Good luck with everything and if you want to swap notes, happy to hear from you.

CM

1 like
Reply

Thank you, i haven’t started taking it yet, partly because I’m putting it off, but I’m on holiday next week in Spain so want to enjoy this before I start taking tamoxifen, I also wanted one month off treatment to give myself a rest, it’s very draining isn’t it.

I’m a couple years older than you so have just started menopause, in fact it started post surgery, so not only have I had to deal with BC but all the hormonal side effects too.

I’ve just started to feel better & feel like I’ve turned a corner to now face tamoxifen, it’s very daunting.

Anyway, it seems like we will be starting around the same time (me in a couple weeks) so yes let’s keep talking & sharing our experience.

Thank you for replying let’s hope we don’t get too many side effects, stay strong & good luck x

Reply

Hi Titch

Thanks for your reply. Don't blame you for wanting a break, i'm draggimg my heels about taking them. Hope you have a lovely holiday and can relax before the next stage.

I have had a terrible time with wound breakdown post surgery, so still seeing nurses every 2 days for dressing changes. This has delayed the start of radiotherapy which is probably still a month off (depending on healing).

Need to bite the bullet and get on with taking the Tamoxifen. Definitely keep in touch. Hopefully we'll both be ok x

Reply

Sorry to hear this, but your wound must heal before Radiotherapy. Try not to worry about things, easier said than done I know. I was dreading radiotherapy but it became very routine after about 3 sessions, it’s surprising how quickly you adapt. I’ve taken each thing one step at a time, surgery, menopause, radiotherapy & now on the last leg with tamoxifen, it’s helped as I’ve been able to manage each thing before tackling the next. If the hospital are not putting you under pressure to take tamoxifen yet maybe wait until your wound has healed a bit more, it’s a stressful time so I found dealing with one thing at a time helped.

Stay in touch x

Reply

Hi , just thought I would give you a little insight to taking Tamoxifen, I started taking it about 8 weeks ago, an so far so good I'm only 42yr so pre- menopausal, my periods have stopped, no weight gain as yet, no hot flushes or flashes as such just get a bit warm from time to time but nothing like to point where stripping off , don't worry it's not as bad as some may think....hope this helps x

Reply

Hi Vgrady76

Thanks for your reply.

Still haven't plucked up the courage to start taking them, but hearing from people like you really helps.

Take care, hope it continues to go well for you.

CM x

Reply

You will know when the time is right for you, at the end of the day by taking it gives us reassurance, and for me I started taking it as soon as I got them x

1 like
Reply

Hello, I was diagnosed at 48 (ER+, DCIS, 3 tumours - 12mm,15mm and 60mm, stages 1 and 2), sliced and diced, glowed in the dark (radiotherapy), reconstructed, 5 years Tamoxifen and 2 years Megestrol (overlapping the last 2 year's of T). I had every side effect listed and some! The M was supposed to reduce the side effects of the T, it might in some, for me it compounded them. I put on over 40lbs (partly due to comfort eating). I was a misery! It was extreme. All that said - my 5 years were up 2.5 years ago. I am now more or less back to "me" but with 20lbs still to lose. My brain has returned (yeah!) and I feel happier in myself. What I want you to know is that no matter what side effects you suffer, if any, you can get through this. If I can, you can, and we are all here with you.

What no one tells you is there MAY be a boomerang effect of some sort in your hormones once you stop taking T. That's okay, it's normal, but do get anything you experience checked out for peace of mind. Within 2 months of starting T, it menopaused me (with all the side effects/symptoms). 6 weeks after I stopped taking it I had a massive bleed (I left bloody footprints on my way to the bathroom, it was running down my legs, sorry graphic, but it happened). I had it checked out - internals and biopsies. It was simply a hormone bounce, not uterine cancer or some other horror, just my body having one last fling in rebellion against all it had been subjected to.

Yes, it was S**T, but I am here to tell the story. Sending you love, hugs and courage. xx

1 like
Reply

You may also like...