Side effects

I was put on tamoxifen for ten years in 2020. Achy joints, tiredness and then retinal toxicity, it just got too much. They did a bone scan on my 5 year check up which revealed no cancer in the bones but I now have arthritis which some reports say are linked to tamoxifen. As I haven’t hit menopause even though I’m 55 there is no other drug I can take and the only way to stop the retinal toxicity was to come off the tablets. So after discussing it with my oncologist we agreed to stop with the meds. I no longer get annual mammograms as I’ve hit the five year mark but as I have dense breast it is unlikely that my cancer would show up through a mammogram. So I intend to pay for an annual breast mri. My thoughts are to just try and make sure I catch anything early if it comes back

Thanks for replying. Yes that’s was I was planning to do. I just want some sort of normality where I am crying all the time, aching every time I walk and the arguments to stop 

Hi C Bear18.  I was also put on tamoxifen for 10 years aged 47.   I was on it for 2 years side effects were horrible, changed to Anastrozole.  Was on it for 3 years and decided to come off it because of the side effects.  I really felt better when I stopped this.  It is such a hard decision.  Good luck with what you decide.

Lee x

Thank you x

I did read somewhere that there is a really high percentage of people that come off the meds due to the side effects, I feel so much better after coming off of them

Hi Cazh24, 

thanks for your reply

I came off tamoxifen for 4 months and it really helped. The oncologist wanted me to try this for a year but it is unbearable. 

Hi C Bear18 I am now on Exemastane which suits me better, has your oncologist mentioned this?

Lee x

Hi Leelaloo, 

I haven’t spoke to him recently but I will definitely mention it. 

thanks 
Maggie