Forum Discussion
Tamoxifen side effects
Hello!!
Just registered to the online community seeking some other people’s experiences with tamoxifen.
I was diagnosed with DCIS in July 2019 at the age of 36. After having a lumpectomy and re-excision I then had a bilateral mastectomy And immediate reconstruction (expanders put in) at the end of September 2019. I also had a sentinel node biopsy at the same time. They removed two nodes and found 8 benign tumours in one node. I am now on tamoxifen for 5 years.
Just registered to the online community seeking some other people’s experiences with tamoxifen.
I was diagnosed with DCIS in July 2019 at the age of 36. After having a lumpectomy and re-excision I then had a bilateral mastectomy And immediate reconstruction (expanders put in) at the end of September 2019. I also had a sentinel node biopsy at the same time. They removed two nodes and found 8 benign tumours in one node. I am now on tamoxifen for 5 years.
It started off fine and then I started getting a real heavy feeling in my pelvis quite often. I mentioned this to my surgeon who said the tamoxifen can cause this. This has since lessened and I only occasionally get it. However in mid January this year I started having trouble with my bowel movements. Although I didn’t feel all that constipated I must have been at some stage as I was experiencing a lot of pain after a bowel movement.
I saw a GP and spoke to my surgeon and they both said tamoxifen doesn’t cause constipation?? I was a little surprised as one of the side effects listed is constipation 🤷🏼♀️ I ended up seeing a specialist at the end of Jan/early Feb and he said I have quite a bad anal fissure. He prescribed a cream which did help but hasn’t fixed it. I’m finding the pain isn’t too bad for a while and then it gets worse again. The pain is so bad at times I can’t do a thing but sit and cry.
The specialist said there is an operation that can fix it but there is potential it can cause incontinence. Obviously not something I want!! I guess I’m seeking others opinions and experiences with the tamoxifen. Have you had a similar issue, how was it fixed? I spoke to a lovely breast cancer nurse who said that it is an option to stop the tamoxifen for 4 weeks and just see how things go. I just don’t know what to do. I’m also thinking of getting a second opinion/talking to another breast specialist as I don’t always feel my surgeon has the time to discuss things properly. I don’t know if we’re allowed to ask for names of specialists or not hear?? I’m based in Adelaide.
I saw a GP and spoke to my surgeon and they both said tamoxifen doesn’t cause constipation?? I was a little surprised as one of the side effects listed is constipation 🤷🏼♀️ I ended up seeing a specialist at the end of Jan/early Feb and he said I have quite a bad anal fissure. He prescribed a cream which did help but hasn’t fixed it. I’m finding the pain isn’t too bad for a while and then it gets worse again. The pain is so bad at times I can’t do a thing but sit and cry.
The specialist said there is an operation that can fix it but there is potential it can cause incontinence. Obviously not something I want!! I guess I’m seeking others opinions and experiences with the tamoxifen. Have you had a similar issue, how was it fixed? I spoke to a lovely breast cancer nurse who said that it is an option to stop the tamoxifen for 4 weeks and just see how things go. I just don’t know what to do. I’m also thinking of getting a second opinion/talking to another breast specialist as I don’t always feel my surgeon has the time to discuss things properly. I don’t know if we’re allowed to ask for names of specialists or not hear?? I’m based in Adelaide.
Sorry for the long waffly message! Thanks in advance x
12 Replies
- That’s great that everything looks normal. It’s just no fun having all these things go wrong with our previously healthy bodies - and they are a direct result of treatments. Lifesaving treatments but they sure can cause some miseries.
- Another update!! So I ended up having to have a colonoscopy on Monday and thankfully it all looked normal! At the same time my surgeon did a sphincterotomy (small cut of the muscle) that will hopefully help everything relax and the fissure to heal. My goal is to helpfully stop having to take coloxyl and magnesium and just control with diet again. Oh the joys!!
- @ChezaH that’s a good enough reason to eat popcorn! It is fibre.
- MBall said:Thanks so much for your responses ladies. I really appreciate it. Just to give you all an update....
I started taking some magnesium San pellegrino each night and this definitely helped things move along (@"Michele B" im not sure if this is the same as magnesium citrate?). I then spoke to my plastic surgeon who referred me to a lovely medical oncologist who I met with a couple of weeks ago. She spent about an hour with me going through everything which was great. Long story short she said obviously it’s not ideal to be on coloxyl and magnesium for too long if I don’t have to be so she said to stop the Tamoxifen for 3 weeks and see how things go and also try and slowly stop the magnesium and coloxyl. I have stopped the magnesium but still take the coloxyl as unfortunately I’m still having issues with bowel movements. So looks like it may not be the tamoxifen at this stage. She said if that is the case I’ll probably need to get a colonoscopy to look into my issues further. I also had my bloods done to check a heap of things and get those results next week when I speak to the oncologist again. To be honest it’s all doing my head in 😣 I know things could be a lot worse so I need to be thankful for that but I just need answers. Hopefully I’ll have them soon. So sorry again for the waffly message but it’s great to have a vent sometimes. Thanks for reading xx
Hi MBall constipation is the worst thing, I had it with AC and had to have an anemia, good luck with it all, I found eating popcorn helps LOL whatever works, hugs Cheryl - Hi @MBall! I started Tamoxifen in April and struggled with painful constipation. I think this was mostly a result of the post-operative pain meds (polexia) after my mastectomy. I used anusol cream and suppositories when it was acute. I also used glycerin suppositries. I tried prune juice but found it caused cramping. In the end, I use metamucil everyday, add extra oat bran to my cereal and eat lots of vegetables. I wish you well.
- Thanks so much for your responses ladies. I really appreciate it. Just to give you all an update....
I started taking some magnesium San pellegrino each night and this definitely helped things move along (@"Michele B" im not sure if this is the same as magnesium citrate?). I then spoke to my plastic surgeon who referred me to a lovely medical oncologist who I met with a couple of weeks ago. She spent about an hour with me going through everything which was great. Long story short she said obviously it’s not ideal to be on coloxyl and magnesium for too long if I don’t have to be so she said to stop the Tamoxifen for 3 weeks and see how things go and also try and slowly stop the magnesium and coloxyl. I have stopped the magnesium but still take the coloxyl as unfortunately I’m still having issues with bowel movements. So looks like it may not be the tamoxifen at this stage. She said if that is the case I’ll probably need to get a colonoscopy to look into my issues further. I also had my bloods done to check a heap of things and get those results next week when I speak to the oncologist again. To be honest it’s all doing my head in 😣 I know things could be a lot worse so I need to be thankful for that but I just need answers. Hopefully I’ll have them soon. So sorry again for the waffly message but it’s great to have a vent sometimes. Thanks for reading xx - Hi Yes I had a terrible reaction with AC and had 3 weeks off which helped my body recover. Best wishes xx
- Hi @MBall
I have had many many issues with Tamoxifen. Nothing like that though you poor thing. Absolutely take the break off the drug and see how you go. That's the easiest thing to try first.
Hope you get it sorted soon lovely.
xoxoxo - Hi @MBall, I took Tamoxifen for 4 and a half years and was constipated every day!!
My saving grace was taking magnesium citrate evwry day, which really helped, along with prune juice before bed when necessary.
Wishing you the best of luck and hoping one of these options may help and make you more comfortable.
Best wishes, Michele x - Hope this link may help as it suggests amongst causes are medications! Hope it will help to bring the body back to somewhere near normal routine
https://www.healthline.com/nutrition/best-foods-for-constipation#section8
