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The road to diagnosis

6 REPLIES 6
Member

Re: The road to diagnosis

Another person who has had really painful bone aches (legs only fortunately) on Tamoxifen.

Member

Re: The road to diagnosis

Just because you have breast cancer it doesn't mean you can't have something else too! I started tamoxifen in March. I finished other chemo in April and radiotherapy in June. I had a clear bone scan in June but really painful joints and early morning stiffness. I couldn't wear my engagement or eternity rings. My oncologist thought it could be tamoxifen and I wondered about my forced menopause.
I saw a rheumatologist in August. I have a sero-negative inflammatory arthritis which is much better on treatment.
Ask your gp to send you to a rheumatologist.
Community Champion

Re: The road to diagnosis

Hi Mawfred
If you are really worried I would ask for another bone scan or a CT scan to put your mind at rest. I had further bone mets progression whilst on hormone treatment and the symptoms weren't what I'd expect. It was more like a muscle strain or nerve being trapped, not bone pain at all. It took an X-ray (which didn't show anything untoward) and a CT scan before it was confirmed my bone mets had got worse. Your oncologist should listen to your concerns and hopefully it will turn out to be nothing to worry about.
Nicky x

Member

Re: The road to diagnosis

Mawfred,I had awful bone pain on tamoxifen and awful muscle pain too so I'd defiantly put it done to tamoxifen.
Helen x
Member

Re: The road to diagnosis

Catlady thanks for your speedy reply. I have taken tamixifen for over a year but stopped when I got clear bone scan. When I restarted bone pain in back started so I stopped again. I haven't taken it for 5 months and pain is worsening daily. Don't feel I can blame tamoxifen when I haven't taken it for so long.
Member

Re: The road to diagnosis

Hi,mawfred,I think it's SEs of tamoxifen. Rather than anything else especially if scan was clear.
Member

The road to diagnosis

I wonder if anyone can advise on the length of time between experiencing symptoms and finally being diagnosed with secondary cancer. I have ongoing bone pain which us worsening and popping up in new locations fairly rapidly. I have stopped tamoxifen and if anything pain is worsening. In august a bone scan was clear and my gp is reluctant to take further action.
I will attend breast clinic in January. I have been experiencing pain for over a year. It seems to me that if it can't be seen it's assumed not to be not exist. Has anyone else had this experience? I have pain in my thigh, side and upper back. The pain in my thigh is burning whereas in my upper back I feel as though I've been hit with a mallet. My shoulders, knees and wrists also hurt but as this is symmetrical I'm guessing it's not sinister.