Tamoxifen side effects

@JoHobbs - welcome to BCNA!  I hope we can help you with any queries .... just ask away - there are no silly questions here!  Our aim is to help everyone that we can.

It sounds as if you thought you'd be starting on Tamoxifen (as I was also told by my surgeon) but then the Onc actually prescribed you Exemestane (a totally different hormone treatment!)  My Onc put me onto Letrozole first, then Exemestane, then Anastrozole - which are all AIs, whilst Tamoxifen is a SERM. (Description of them below)   Each of them have caused me aches & pains, but Anastrozole has worked the best for me (I've been on it for nearly  4 years now.) 

The GOOD news, is that not EVERYONE gets any or all of these side effects!!  Many of us DO get some of them tho. :(


Make haste slowly & get better before trying the harder exercises ..... and with that chest tightness - make sure you mention it to your breast care nurse and/or get checked out by your GP/heart specialist, reminding them that you've had chemo - as some chemos can affect your heart a bit! :(  xx. 

If you put 'cannabis oil' in the 'search area' on the Discussion Page, numerous posts will pop up to check out.  It is a shame that Canberra/ACT Residents are considered 'responsible enough' to be able to have 2 Cannabis Plants (4 per household) whilst the rest of Australians are NOT considered responsible enough .... grrrrrr. This needs to change.   What is good enough for ONE state, should be made available to ALL states!   It would bring relief to a LOT of patients with all sorts of problems, not just cancer. :( 

Take care xx

Thanks Cath, I was told that joint pain would be an issue so I was expecting it, but its not just my joints. Sometimes it moves too? One minutes its my ankles then in my knees then one shin? Its bazar. The pain was really bad by the end of last week after working. It seems to be worse if Im in one position for too long (sitting/standing at a desk). Add to that tired and irritable from limited sleep. I tried a Covid test hoping it was that and not the medication  :'( 

I still have restricted movement of one arm due to surgery and am unable to bear my own weight enough to do yoga. I'm meeting with my doctor today to try and get a care plan together. I want to see a physio so that I can start working towards full movement and building strength up again. 

I can and do stretch my legs, groin and arms. I'm unable to stretch my chest because of my arm. I fell through the cracks after surgery so didn't get any physio before radiation so I'm struggling with cording and internal scaring.

I am trying to walk for 30 minutes each morning, the tightness in my chest (that only started last week) did make me slow a bit this morning but I persevered.

Its hard to stay positive all the time.  Thanks again for responding Cath xx

Hi @JoHobbs, sorry to hear about your story. It's a whirlwind isn't it. I had similar treatment to you. 

I started on tamoxifen in November 2020 and lasted on it for 20 months before having a 6 wk break and now I take Letrozole. We all react differently so it's hard to say what will happen for you. 

When I first started tamoxifen I had alot of hot flushes but it settled down after a couple of months. I always woke up at night for an hr or 2 but I just went with it. After about 16 months things changed again and I started to get so fatigued and breathless, even going upstairs was a struggle. I never got joint pain with tamoxifen. I wasn't aware that was a possible side effect. It's more common with the AI meds.

I booked in to talk to my oncologist about my side effects and she immediately ceased tamoxifen. She suggested I have a break. Oh wow my life was just wonderful without it however my cancer grade was high and my risk of return high so I needed someone else.

Originally the oncologist thought I would go back on tamoxifen after a break but the breathlessness issue was too much of a concern and hence now on Letrozole. So far I am ok but really stiff and a few joint pains I am trying to manage. 

I would suggest sticking with tamoxifen for now. See if it all settles down. It might. Talk to your oncologist. Have a review after the 6 wk mark. Are you doing any stretches for your joints or some yoga. I know you get tired but even 10 mins to start with may help.  Some members have medicinal cannabis and find it helps. 

Good luck with your treatment.