Thinking of declining Tamoxifen

Hi Jo, I had hormone positive grade 3 cancer that had spread into my lymph nodes 5 years ago, i had a lumpectomy, all my lymph nodes removed and radiotherapy.  They recommended I took Tamoxifen for 10 years.  I was diagnosed at the start of Covid so they weren't keen on giving chemotherapy so sent a biopsy of my cancer to America to get an Onco DX score which came back low to medium risk of recurrence so I didn't have chemotherapy.  The first couple of years I didn't get any major side effects, year 3 I got hot flushes and aches, year 4 the hot flushes went and 8 months into year 5 I was diagnosed with Retinal Toxicity from the Tamoxifen so stopped taking it.  I haven't gone through menopause yet which I'm assuming you have, I'm not sure you would get the hot flushes and mood swings if you have already gone through menopause but they usually recommend a different drug if you have already gone through the menopause.  When I came off Tamoxifen there was no other option as I am premenopause even though I'm 54.  Even now I'm off Tamoxifen I have aches and pains but I think these are arthritic, personally I feel they're from taking the Tamoxifen for nearly 5 years.  I feel much more human now I'm off the Tamoxifen, I'm not sure quite in what way or even if it's just psychological ;-) I haven't had to make your decision until I was already 5 years down the line of taking Tamoxifen but now I have just decided to stay off of it and I am having an annual breast mri and ultrasound privately.  My hope is that I would therefore pick something up early enough for action without having to put tamoxifen into my system.  The NHS would only give me an annual mammogram but as I have dense breasts my cancer did not show up on a mammogram and my consultant said that a future cancer probably wouldn't show up either.  I know my situation is a bit different to yours but hope it helps. Sending love x

Thank you Cazh24 for your reply. I need to hear how others have coped with taking tamoxifen haven’t been able to find anyone who hasn’t had problems. My head really says no but I must make the right decision and move on and stop worrying. Best wishes to you 

Hi Jem562f33e9 

People usually come to forums when they are experiencing difficulties which can make it seem like everyone who takes tamoxifen struggles. Many people take it with very few or even no side effects. I have been taking tamoxifen for a year and a half and have no issues whatsoever. Apart from the daily reminder alarm and actually taking the tablet I wouldn’t know I was on it.

Only you can make the right decision for you. x 

Thank you Eebee