Steve’s Story

We all know how rare Sarcoma is, only 3800 new cases a year in the UK and 0.75% of all cancers in England. But sarcoma in the bone is even rarer, at 0.18% and my type chondrosarcoma is rarer still with only 90 new patients a year in the UK. So (shades of Groucho Marx) I am a member of an exclusive club I’d rather not belong to. 😎

But enough of the statistics, this is my story. In early 2012 I discovered that the ring on my finger was getting very tight. I got the ring extended but that didn’t seem to help.  So after a couple of months I went to see my GP. Perhaps at this stage I would like to pay tribute to my GP as he has been brilliant throughout and I know that this isn’t always the case with GPs.

He thought it might be a benign bone tumour (now I know that tumour means lump, nothing more sinister) and sent me for an X-Ray. On receiving the results he got me an urgent appointment at the local hospital. The consultant there, a hand specialist, thought he might need to operate but decided to wait to see if anything changed. A few months later I arranged an urgent appointment with him because the pain was getting difficult to bear. He arranged for a day-case operation for the following week to remove the lump and ‘lubricate’ the badly behaving joint.

Signing the consent form, the doctor told me that there was a 1 in 50,000 chance of the tumour being malignant and the staff nurse warned me that a sample would be sent to histology. I thought nothing of it.

Two days after the operation I saw a hand therapist, who tended to the wound and helped me get my hand operating normally again. Little did I know that I would be seeing therapists for the best part of a year.

Two weeks after the operation I went to get my histology results and was told they were not available as they had, under NHS guidelines, to be sent to a lab in Stanmore. Even then I didn’t think anything of it.

I returned to see the consultant a month later who told me that I had sarcoma in the finger. I had never heard the word ‘sarcoma’ before. He arranged for me to go to the Royal National Orthopaedic Hospital in Stanmore, North-West London because it is the centre of excellence for the South of England for bone sarcoma. I was reassured that Stanmore would probably just keep an eye on my finger.

Thus I was totally unprepared for what happened next. We had to battle through snow to get to this ramshackle collection of Nissen huts left over from the war. I saw the consultant and was told I needed an urgent operation. The clinical nurse specialist also handed me letters explaining that I would need to be there all day the next week for various scans, CT, MRI hand scan, Radionuclide bone scan. Considering it had taken us 5 hours to get there, the idea that we had to be there at 9.30 am just added to my hysteria.

That was the lowest point: I fell apart on the journey home and subsequent days. If it hadn’t been for my daughters rescuing me by offering lifts, taking time off work etc, I’m not sure how my wife and I would have coped. Never underestimate the emotional effects that such a diagnosis brings.

But things did get better. I had my scans, learnt what lovely people work at Stanmore and how good it is, with an international reputation. So, when following my scans and before a full body MRI scan, the consultant came out of theatre to tell me that he wanted to convince me to have my finger amputated because the sarcoma was spreading down the finger, I was happy to agree, much to his surprise.

I spent two nights as an in-patient in Stanmore. Perhaps I could summarise my treatment there by saying that, when asked if it was Poor, Good or Excellent, I wrote None of the above, it was fantastic! Like everyone else I’ve spoken to, I found the staff at Stanmore at all levels, absolutely wonderful. They go out of the way to care and sometimes make you laugh so you feel so much better.

I returned to Stanmore a few days later for the doctor to look at the wound and 6 weeks later for a chest X-ray to ensure that the sarcoma hadn’t spread. In accordance with guidelines ^[1], I will be scanned very 3 months for 2 years, every 6 months for 3 years then annually for a total of 10 years.

After the dressing was removed two weeks later, and with help from my GP navigating through the NHS system, I was seen by the hand therapists at my local hospital for the next six months to return my hand to as near normal as possible.

The consultant at Stanmore had said my new 4-fingered hand would look quite normal at first glance. I didn’t really believe him then but he was absolutely right. My party trick is to astonish people by showing them my hand and it often takes the a while for them to realise it hasn’t got 5 fingers. A testament to the skill of the Stanmore surgeons.

I am now back to near normal with a slightly reduced grip in my hand and using a steering wheel cover to help me grip the wheel.

I joined the local support group after my operation and it has been tremendously useful. As I’ve mentioned, the emotional effects can be quite severe and it is there that a support group can be a great help. Even now I get stressed before each scan – scanxiety is a good word for it.  But, as I said to my GP, whilst I obviously wouldn’t have chosen to have sarcoma, working with the support group has given me a new interest in my life,  a chance to help others, as well as making lots of new friends.

Update

Had a scare when a 3-monthly chest X-ray showed something new. Stanmore were superb in arranging an immediate CT scan so I didn’t have to be stressed waiting for an appointment. Then 4 days of an agonising wait to get the all-clear. Sarcoma can be very stressful.

[1] Follow-up guidelines for bone and soft-tissue sarcomas http://www.lsesn.nhs.uk/guidelines.html