Giant cell tumour

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Hi. I was originally diagnosed with a slipped disc, bad sciatica and numbness in my right leg.  I ha£ these symptoms in August 2016  but when I had my discectomy operation at the end of February 2017,they said that found a cyst that they had never seen before, but was told it went well.

Before my follow up appointment I was asked to have a myeloma blood test and a dexta X-ray. So I didn’t have my first follow up appointment till about the 12th week after op.  When I went to this appointment and all he did was test my legs reflexes and then told me it was a tumour and probably benign but might not be.  He used his dictaphone to get my details mri scans etc sent to Birmingham to review, then I had another appointment with the hospital about 6 weeks later to tell me it was benign and hopefully I should have no more problems.

Now in recent months my backache is getting worse again and is now affecting my left leg, sciatica and numbness. So I wen5 to the doctors who wanted me to have a pelvis X-ray and to quote from the form “previous excision giant cell tumour (lumber facet joinf) inc pain to rt SIJ ?Another GCT”. I had my X-ray on Tuesday and am now waiting results.

I think I should have had better care and I have never had follow up treatment of Denosumab or any regular X-rays and I don’t even know if the had removed the GCT completely the first time.  I had obviously googled since this diagnoses as it was the first time I had heard of it.  I also don’t know why I have never been referred to the Birmingham centre and why I never had a biopsy when they first saw it on the MRI and should I have had to wait so long before the operation because I ended up in a wheelchair because the pain was too bad to walk

If anyone can give me any information that would help me, I would be most appreciative.  As I have been refered back to the same neurosurgeon.

  • Hi , welcome to the community though sorry to hear about your problems, don't have any experience with bone cancer as for my wife she has Leiomyosarcoma but for the moment at least things are stable and have been living with cancer now for some time.

    I too did a google to see what I could find out, it is always something to do with a bit of care because there are so many scare stories out there and even what might appear to be a quality source can have undercurrents that are hard to recognize. One site I found that I do really trust though was sarcoma uk and I see they have a page on Giant cell tumour of the bone.

    Since sarcoma is a rare form of cancer the care is concentrated in a few specialist centres, we are quite lucky in that we live really close to Oxford and that is where my wife was diagnosed.

    Hope you can get things sorted soon but we all recognize the struggle with waiting.



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  • FormerMember
    FormerMember in reply to src60

    Thanks for your reply.  Getting info is difficult but I will look at the one you suggested.  I live near to Leamington Spa so I guess that Birmingham is the nearest centre. But I have been refered back to Coventry. I will have to see if I can get it changed or something.  Thanks again

  • FormerMember

    Hi Kaz392 - you have probably been sorted by now but I have just been diagnosed with a GCTB in my sacrum and couldn't just read and run from your message.

    I was diagnosed at Oswestry specialist bone cancer unit. You need to be referred to one of the 5 bone cancer units in the UK if you have not already Stanmore, Birmingham, Oswestry, Newcastle and one in Scotland I think.

    I hope you are sorted and getting the care you need 

    kate xx

  • FormerMember
    FormerMember in reply to FormerMember

    My daughter was recently diagnosed with having a GCT and I found a really useful group on Facebook, that's if your not already members.

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    Kind regards

  • Hi

    please could you share any updates on your journey? I hope you’re all sorted now.
    I had all the same symptoms, sciatica and leg numbness and have been diagnosed with a chordoma in my sacrum. 
    Would really appreciate any advice. 

    thanks Blush