All the medical specialists I’ve seen over the last few months all seem intrigued with my BC and are very upbeat and positive at outcome!! So, why do I feel so depressed? I’ve finished my treatment – Chemo (TAC), complete axillia removal surgery and RT and other than horrid side effects during the treatment I seemed to have come through pretty well but, 6mths on, and I feel terrible. Last few weeks I’ve had such severe leg muscle aches and pains –it’s making me feel so low and so miserable all the time. Not sure what to do – feel I’m caught up in catch 22 situation. I’ve tried taking gentle walks and doing light housework but by afternoon am in such pain I can hardly walk. If I rest, I seize up completely. Xray on pelvis and hip came back clear and the acupuncture treatment tried didn’t work. However, on a very good note my MRI scan has come back clear. Does anyone else have similar side effects. If so, how are you managing ? Any advice would be gratefully received…
Hi
My exprience of taxotere is that aches it causes can last along time. Some people have reported them lasting for many months. While this seems normal it is obviously painful. I would talk to your doc about pain killers you can safely take for long periods. There is another lady on the forum ( that I know of ) who is similar to you in that no primary tumour has been found as yet. Hopefully if I bump this post she might see it. I totally sympathise with feel down. There is a lot to come to terms with and pain doesn’t help.
Take care
Debx
Hi Bubbles123
I am sorry to read that you are feeling so low at the moment, I am posting a link to the BCC ‘Moving forward’ page which contains some information and further support which you may find helpful:
breastcancercare.org.uk/breast-cancer-breast-health/moving-forward/
Our helpline is open weekdays 9-5 and Sat 9-2, our team are here to support you so please call 0808 800 6000.
Take care
Lucy
Thanku Midge and Lucy - you have both been really helpful. I’m seeing my GP later this week and will certainly ask about the painkillers.
Im here Im a Cup, cancer of unknown primary, no panic, get in touch and i will chat with you and help all i can there is also the cup web site but undergoing transition at the moment. No panic we fall in a very good sub set and have a very good prognosis.
Hi Bubbles and Hatty
I was diagnosed triple neg CUPs around 6 weeks after auxillary lymph node clearance on 17 Mar 2011 with 4 of 24 involved. First time I have come across any other CUPs breast cancer and very happy to meet you. I am 46, in Cairns, Australia but lived in London for a long time.
Am still not on chemo as too scared of the side effects. I had a dna test done on the lymph tumours which confirmed a breast origin last week.
I have looked at medical research papers and also think that we have a fairly good prognosis but I could find nothing on triple-neg CUPs BC - only CUPs BC as is seems so rare!
The onc was going to put me on 6xTAC with radiation to arm and breast during the chemo. I have done some research and find that Anthrycylcines, of which Doxorubycin is one, are now strongly suspected to be only effective in a subset of HER2 positive patients. So I went back to the onc and she was quite amenable to me doing TC instead of TAC and instead of cyclophosphamide she suggested carboplatin which seems to be used for metastic patients. Will make my mind up very soon or it will be of no use.
One study of 11 breast CUPs patients I found that was done in 1982 showed only one definite death out of 11 in 10 years. Some of the other dropped out of contact for one reason or another. They only used radiation and no chemo in this study but it is very likely that no one was triple-neg as they didn’t test at that time.
Would love to find a CUPs website and find out more about our prognosis.
Take care