Tamoxifen side effects

[El-P]

After 3 operations, I finished radio therapy for breast cancer (RH side) on 21 August, started Tamoxifen on 6th September. In the last two weeks I’ve been feeling really fatigued especially in the morning, once that eases I’m left with a sensation like I’m drugged, slightly drunk all through the day, less concerning is my body temperature is all over the place, hot hands and trouble sleeping. Spoke to BCN this morning, who clearly was reading a check list and said she didn’t think it was due to the Tamoxifen. Said I should raise it with my GP ( which I will do).

I’m 56 and post menopausal but have opted for Tamoxifen as I’ve also suffered from atrial fibrillation recently. I’m supposed to return to work next week so would really appreciate any useful tips on how to deal with any of this. I’m also curious whether any of you have experienced a ‘spaced out’ sensation after RT and/or on Tamoxifen.

[Happyrosie]

I’ve never been on tamoxifen as the preferred range of drugs for the post menopausal woman is exemestane and it’s chums. So as for how to deal with Tam side effects, I don’t know, A word with MacMillan, maybe?

if this was me I would research further by asking to talk to the pharmacist attached to your GP surgery, if there is one. Or your local pharmacist. Failing that, a telephone appointment with your oncologist who presumably was the one who suggested Tam.

[mathematics]

Hi, I was on tamoxifen for 5 years followed by letrozole for another 5 years. I was 48 years old when I was diagnosed with breast cancer. As I had had chemo and radiotherapy I did not really notice the side effects of tamoxifen as I was not sure what to attribute them to. I did get brain fog but I attributed that more to the chemo. I know that my periods had stopped after the chemo but I got break through bleeding and put on weight I actually went up 2 dress sizes. I also wanted to go to toilet a lot and had break through bleeding here which they attributed to the tablets. I also got mastitis twice and had water retention my ankles would swell up in the heat especially. In the morning my legs would feel dead as well getting out of bed but this could again have been a side effect of the chemo. As my cancer had been a grade 3, I persevered and took the tablets as adjuvant therapy to make sure that the cancer did not recur. I have been off the tablets for over a year and have shifted my weight my ankles are not swelling and my hair is finally thickening up after the chemo. So yes there is unwanted side effects but you have to weigh up individually how you wish to proceed, with the advice and help of your oncologist. All the best

[Onedayatatime60]

Dr Liz O'Riorden is a breast cancer surgeon as well as a pt currently dealing with her third local recurrence of breast cancer. She has a YouTube video here on how to deal with side effects of Tamoxifan. She is a wealth of knowledge , has written a book and shares a lot of info via Twitter and YouTube about all things breast cancer related. Hope this helps.

I tried to share link didn't work. Google

Dr Liz O',Riorden Tamoxifan and it will come up

She is a really great source of information

[Cyara_B]

Your side effects - at least some of them - sound like menopause! It MAY take several months for the symptoms to settle down... (sorry).

I was 49 when diagnosed with BC (Rx mastectomy and RT and then Tam for 5 years and Megesterol for 3 years, overlapping the Tam) and pre-menopausal. The Tam menopaused in 2 months flat and that was it - hot flushes night and day, brain fog, poor memory, miscellaneous aches and pains, increase in hayfever/sinusitis (immunity issues), night sweats, poor sleep (worse than before), a general feeling of discombobulation, low libido, etc, etc, and I could go on. In hindsight I also know that my anxiety levels rose significantly with bouts of depression. You may be experiencing menopause symptoms post cessation of menses. I htought once we were done, we were done, sports model and carry on! Pfft! Was I wrong.

My various issues were ALL down to menopause and my body needing oestrogen (even just a tiny bit) and no one connected the dots. I went to a menopause talk in my area thinking that 10 years on I might be able to learn and help other women. By the end I was in tears - they were talking about ME! I can't do HRT proper as my BC feasted on my ostrogen (the basket!!) BUT, I now have got tiny vaginal tablets that give a tiny bit of relief and I actually feel I have a chunk of my life back. So, my suggestion - get a referral to a menopause clinic (ask your GP receptionist for a referral - mine accessed the menopause clinic booking and got me an appointment without going via a GP) and talk about all the you are experiencing (make a list!). If it is not menopause related, or side effects of the Tam for you, then it's worth going back ot the GP and asking for further tests. You should not be left feeling like this. Perhaps Tam is not for you.

And BTW - I was prescribed Megesterol to offset the side effects of the Tam. What a joke. The two partied together and I went through hell. I only know that now as I look back from a more even keel.

So please - talk to someone medical. Don't suffer alone. Love n hugs Sister

[Sheppie]

Hi, Sorry to hear you are suffering various symptoms. As ex. Practice Nurse I would go to get help. I have been on Tamoxifen for 3years and no side effects noted. I didn’t go through chemo or RT. Off to get 4th breast scan in a fortnight. Fingers crossed it’s fine. If you are still under hospital care you could follow that route. The breast care nurses will help with any problems you have. Hope this is helpful.

[El-P in reply to Sheppie]

Thank you for the advice. I’ve been back in contact with the breast care nurse and we’ve agreed that I’ll come off Tamoxifen for two weeks to see if the fatigue, insomnia, blurry eyes, etc improves. Under the supervision of the heart specialist nurseI’ve also stopped Sotalol (AFib medication) for a test period prior to this but that didn’t make a big difference. My GPS also doing full bloods to see if there’s any deficiencies.

It could all just be my 56 year old body taking a bit longer to bounce back after breast cancer (RT in aug 2023), atrial fibrillation ( cardio version in early Aug 2023) and gallbladder issues all kicking in at the same time.

I’m in recovery but it’s taking a longer time than I’d hoped, and I would like to feel that I’m not on drugs, makes working very difficult( started back at work last week).

Still I’m feeling better with the health professionals who are listening and working with me on this. Fingers crossed in a months time so may even feel normal ( whatever that it).

Again hugs thanks for everyone’s thoughts, advice etc xxxxx

[Redwine50]

I’ve been on tamoxifen for8 years.side effects first couple of years but since my hysterectomy the side effects have reduced.it might be the brand so speak to your pharmacist for advice.good luck and take care x