I was on Tamoxifen for 5 years, no side effects thankfully. Then came off when I had a reoccurrence and had to have surgery, Radio and chemotherapy. I was by then menopausal so I was then on Arimidex for 13 years again no side effects. I am now 22 years clear of anything to do with breast cancer.

might be worth asking oncologist/GP about Arimidex , here is a link

www.google.co.uk/url

best wishes

Hi Juls,

Welcome to our forum.

Can I ask what grade and type your cancer is?

I am sorry to hear about the problems you are having with Tamoxifen and,with your GP and your Oncologist. I am amazed that your oncologist said that there's no alternative. There are certainly other medications that can be taken instead of Tamoxifen - Letrozole, Arimidex, Aromasin to mention but a few.

I have had 2 bouts of breast cancer in the past 10 years. The first time I had a lumpectomy followed by Tamoxifen for a year. I then discovered a second primary in the same breast and had a double mastectomy followed by Letrozole for 6 years. I stopped taking these in July 2017,

Tamoxifen certainly caused all the side-effects you describe, but the worst one for me was the mood swings. This lessened when I changed to Letrozole, but the joint pain became a lot worse. I guess that there are various side-efects to all of these treatments, but it is a case of finding the right one for you.

Are you due to see your oncologist soon? If not, why not phone your breast care nurse and discuss the side-effects and, let her know that you want to try an alternative.

I hope that you manage to get a change and that it idoesn't cause any further problems.

Please keep in touch and let us know the outcome. We are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine

thanks for your reply. 

I think I was lucky in that I was only grade 2 (lumpectomy) and it was found in a routine mamogram (I'm 62). They did find a little more sitting just outside my nodes and had that removed 6 weeks after my first op. This followed by 3 weeks radiation then on to Tamoxifen for 5 years. I was told by oncology that if I suffered any bad side effects they would look at finding an alternative. My conclusion was that because of the low grade they didn't think it vital for me to change to any other medication. I was told that the medication was to help the cancer from not returning!

I also suffer from arthritis especially in my hands so whatever medication I take it looks like the bones could get affected  

i will certainly take your advice and call my breast care nurse to see what she advises  

I have no follow-up with the oncology. My next appointment is my yearly mamogram in July 2020. 
thank you again. I will update once I know

juls
 

Hi Juls,

I was grade 1 Mucinous carcinoma, which is one of the least aggressive types of cancer, yet it returned within only a year. I then changed to Letrozole and have had terrible bother with my joints. I had to have both knees replaced after I'd been taking it for about 3 years. the other side is that I am still here to tell the tale 10 years on. There are other medicines which don't usually cause as much bother with the joints, so stick to your guns.

Your breast care nurse is a good conduit between you and your surgeon and is always there for you whenever you have a problem.

I look forward to your update.

Kind regards,

Jolamine xx

Hi im having a nightmare on it 18 months so far I feel like im been crushed from inside out the pain is horrendous,  dont sleep , hot sweats mood is all over I really want to come off it ive just ordered some vit d and magnesium to see if that helps with the pain im feeling xxxxx

I am so sorry you're experiencing such bad side effects! I think I don't have side effects but I do as I don't feel great on a daily basis and my sleep pattern is all over the place! I am due to come off a tamoxifen after being on it for 5 years! My oncologist is happy for me to stop now and not continue for a further 5 years as initially suggested. I'm worried what stopping will do and if there will be withdrawal symptoms! 

13May2023

looking at the date u posted a long time ago this is the first time chatting about my termanel secondary breast cancer diagnosis although I'm lucky 8 years on from this I'm considering just stopping Tomoxifen because of the same side effects u are enduring I just can't stand them any more I've been told I've not got a lot of choice left but to be honest I'd rather just feel good for a while then suffer this any more, by the way my mouth and jaw are also really playing up

Hi Bettybobo,

I am so sorry to hear aout your terminal diagnosis and your problems with Tamoxifen. Can I ask what age you are, as there are other hormonal treatments for people who are post-menopausal?

In what way are your mouth and jaw plaaying up?

Please remember that we are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine

thank you for kind words my jaw at either side feels stiff and painful wen I open my mouth also have swelling on both sides of the jawline not massive but there Somtimes the pain goes right up my face giving me a headache I also feels tremendastly sick all the time These symtons are just part of my problems hense wanting to stop taking Tomoxifen x

Hi Jamine forgot to say I'm 72