i am pretty new to the site still fumbling around . Here is my problem I was taking tamoxifin an I started with severe knee pain. I stopped the tamoxifin after a lot of debate from doc. I have been off the meds for about 3 weeks but my knee pain is still there . I concerned have appt with on oncology Tuesday has anyone continued to have pain after stop tamoxifin an how long did it last. I am just scared it is something else more cancer. Ant info would be greatful


Hi, I don’t have fast amounts of experiance with Tomoxifen (yet) but from what I’ve read bones mets rarely start in the knee so hopefully there is a more innocent cause for the pain, is there any chance it could be arthritis or maybe due to bad posture? It’s funny how some options sound so good compared to what it could be. I hope the oncoligist can put your mind at rest for a while
Sumica xx

Hi Mommaferg,

You don’t say how long you have been taking Tamoxifen for, but there is certainly some evidence linking it to morning stiffness and joint pain, though this is usually small joints (fingers, toes, ankles, wrists) and, if I recall correctly a possible link to early onset srthritis (can’t recall which variety). Not all GPs are aware of this, and not all teams believe in the effect - I am fortunate that mine all do. It sounds to me like you GP and onc are erring on the side of caution, with the intention of reassuring you rather than scaring you. My lot are pretty ‘anti’ X-rays, scans etc as a means of reassurance but sure as anything act fast if they have concerns. About three months after I started on Tamoxifen (starting during my rads) I had persistent low back pain - and was terrified it was mets - I rang my BCN who talked me through my symptoms and then said “that’s the wrong sort of back pain…try this… and if you are still worried come back in few weeks” I did what she said and it did ease and then stop, just took a long time (several months). Hopefully you will be the same. Do try to keep in mind theat surgery, chemo and rads all impact our bodies, and being ‘woman-handled’ by medics can leave us with odd aches and pains for some time.

Take care and hope it is as good news as possible

Hi mommafreg
I had a bone scan because of bad neck, back and also knees, I was told that bone mets rarely present in the knees. My scan just showed arthritic changes. Did you have chemo? only asking as I’m not sure if Tamoxifen is the cause of my joint pain as I was thrown into menopause on Chemo and think this is more than likely the cause of all my symptoms, I was 45 when diagnosed in 2007. I’m due to stop Tamoxifen in May so not long now to find out if the flushes stop.