Over 40 years later he has been treated for secondary cancer caused by radiotherapy treatment he received for chondrosarcoma.
I was diagnosed with chondrosarcoma in my knee in 1981 when I was nearly 21 years old. I had been playing football and had fallen over and hurt my knee.
I carried on and finished the game and put up with the pain for a few months until my dad suggested I go for an x-ray.
I visited my local hospital in Epping where they carried out an X-ray on my leg. They told me they could see something at the back of my knee and asked me to go back in a few days so they could investigate further. The next thing I knew I was transferred to St Barts Hospital in London as I had cancer.
I went to St Barts with my dad where I had another X-ray and then went to see a consultant. He told me that I had a bone tumour, that it was serious and because of where it was in the knee, I would need to have my leg amputated.
I had an above-the-knee amputation in January 1982. There was no support for amputees at that time.
I now volunteer for the Limbless Association to support other above-the-knee amputees, give advice, and pass on knowledge that I have gained over the past forty years.
I was told that the type of bone cancer I had was chondrosarcoma, but this meant nothing to me at the time. I was also told that it could possibly spread to my lungs, so as a precaution I had six weeks of radiotherapy and was in hospital for the whole of that time, just going home to my parents at the weekend.
I was then on regular follow-up appointments every 2-3 months at St Barts, which at that time was one of the first hospitals to have a CT scanner. Two years later, in 1984, they found a small tumour the size of a baked bean in my lung. This was removed. A couple of years later in 1986, a second tumour was found in my lung in the same place as the first, which was also removed.
Fast forward to 1989 and I started to experience back pain. I went back again to St Barts for more scans. This time they told me I had a tumour on my liver, which meant a serious operation to remove the tumour, with a long recovery time.
After the surgery, the specialist liver surgeon came to see me and said there was no tumour on my liver (despite what the scans had indicated), but they had found a tumour on my diaphragm around the liver, which was removed.
The surgeon had never carried out this operation before and had to remove part of my rib to be able to reach the tumour and remove it. I was followed-up each year with an X-ray for the next twenty years, until a consultant finally discharged me.
I got on with my life, met my wife, got married, and had children. I was cancer-free for 34 years.
Then, in February 2023, I started to get terrible pain in my little finger. I went to see my GP, who referred me for a nerve test at my local hospital. The test showed something was not quite right, so I was referred to another consultant who did an MRI scan, which indicated I had a tumour in my back.
The tumour was pressing on a nerve causing the pain in my finger.
I was referred to the National Hospital for Neurology and Neurosurgery in London, where I had another MRI scan and PET scan to determine whether the cancer was benign or malignant. I was diagnosed with a nerve sheath tumour, another very rare and slow-growing tumour.
Following these scans, the medical team were still unable to tell whether the tumour was benign but they decided, given my medical history, the tumour had to come out and I had surgery to remove it in August 2023.
Most of the tumour was found to be benign, but there was a little bit that was concerning and found to be malignant. I was told I had the choice of being monitored for the next 10 years for recurrence or I could have proton beam therapy (PBT). I chose proton beam therapy and was referred for 38 sessions which started in January 2024.
I was told the side effects may include extreme fatigue and nausea, but I was fortunate that I did not suffer from either of those.
After around five weeks I did get problems with swallowing, as the proton beam therapy to my back was near my oesophagus, so I was given medicine to numb my throat when eating to ease the pain and I changed my diet to eat softer foods. I was able to come home every weekend and see my family and finished treatment at the end of February.
I feel like I am now back mentally and physically to where I was before I developed the pain in my finger. My oncologist has suggested that the radiotherapy I received as treatment for chondrosarcoma more than forty years ago caused the nerve sheath tumour, which I still can't get my head around.
I have just got on with life as an amputee, have never felt sorry for myself, and I am happy to say that my life has been very fulfilling. My advice to others would be life is precious, never give up.
Early detection gives you an increased chance of success. Always go to your GP or consultant, never think it's only a minor condition — my last tumour removal from my back started off with pain in my little finger!
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