A Curious State of Affairs …

I am a cancer survivor. I was diagnosed with Chondrosarcoma (a rare type of primary bone cancer) of the tibia in 1995 and I am still here to tell the tale. If you are a cancer survivor too, would you consider copying  one of the ribbons above and displaying it on your blog – to give others with cancer hope? You can read the post about why it’s important here.

Do please link back to this page if you join my campaign to help spread the word – I’d so like cancer patients to know that their are plenty of survivors out there!

This is the story of my journey with cancer:

Jan’s Journey 
Chondrosarcoma at the distal tibia: grade 1
Year of Diagnosis: 1995
Consultant: Mr Steve Cannon RNOH, Stanmore, Middlesex, UK
Surgical removal of tumour in 1995
Further surgery to stengthen tibia with bone cement 2001
Currently: NERD (no evidence of recurring disease)

Diagnosis: During 1993 I bought a small trampoline for use at home; I’d read it was good exercise and was keen to keep fit. I started to use it daily and almost immediately I experienced an excrutiating pain in my left leg. It was like a bee sting that lasted ages, so severe that it made me stop in my tracks and gasp. Once the pain had been triggered it didn’t go away – it was either low grade like an ache or intermittently extremely painful. It affected my walking quite quickly so I made an appointment to see my Doctor. He suggested I’d pulled a muscle on the trampoline – even though I knew it wasn’t that kind of pain. The pain continued and became more intense and more regular so that I was walking with a limp and could not walk any distance at all.
It felt like a rat was gnawing the bone of my leg the whole time. During this time (over two years) I kept returning to see the Doctor and he kept fobbing me off and not taking my pain seriously. Then one day in complete despair I went to his surgery and refused to leave until he sent me for an x-ray. The x-ray showed a mass inside the bone of my Tibia.

I was then sent from one specialist to another, each misdiagnosing the mass. I had scans, MRI, more x-rays. Eventually having painfully tramped all over England seeing these specialists I began to despair. Finally, I was referred to Mr Steven Cannon (privately) in London. He recognised the mass for what it was immediately and said I needed urgent surgery. I had been feeling depressed about the pain and felt helpless despair but once the problem was correctly diagnosed and was to be treated, the depression started to lift.

Treatment: Within a few days I was in the Clementine Churchill Hospital in Harrow, undergoing surgery. The tumour was Chondrosarcoma grade 1 and it was surgically removed in December 1995. The leg was not strengthened at the time as it was not thought it was necessary and it was also thought that bone cement might disguise a recurrence. I was in plaster for eight weeks. I had the surgery just before Christmas and was told that everything had gone well – I was told it was a tumour but fine.

It was not until a follow up appointment on my birthday (at the end of January) that I was told the tumour was Chondrosarcoma and malignant. I asked if that information had come from the result of the biopsy. Mr Cannon said “no”, he had known exactly what it was right fom the start but had thought it would ruin my Christmas to tell me. In some ways this admission made me fearful that he would keep other things from me. I would have preferred to know the truth straight away – I’m the kind of person that deals well with things I understand. I am more likely to worry if I’m kept in the dark. I feel this was a grave error on his part. I have since heard that he is known for telling patients the minimum amount – so my advice is if you see him, ask him all the questions you want answers to. He will respond well and in detail – he’s just not good at offering the information if you don’t ask.

Recovery: I was surprised at how wasted my leg was when the plaster was removed. Also the tumour had been near the ankle joint and as a result the ankle joint lost a lot of its flexability initially. After the inital healing process I had several months of physiotherapy which improved flexibility of the ankle joint. It took ages before I could walk comfortably.

Further Treatment: Over the first five years I had regular follow up x-rays, sometimes scans or MRI. I found towards the end of the five years that I was getting what I was later informed was “stress pain” – because the bone had ben weakened by surgery and the cavity left from where the tumour had been situated had not filled back in. So in 2001 I had further surgery – curetage and biopsy and bone cement was used this time to fill the cavity. Again I was on crutches initially and had phisiotherapy after the healing time. I continue to have follow ups but am currently free of recurrence many years later.

Life Now: My life is more or less normal although I do have residual problems – nothing I can’t handle though! If I do any serious walking my leg aches afterwards (very uncomfortable) the ankle joint swells on that leg if I fly, also in hot weather or if I exercise a lot. I tend to wear a support stocking on it if necessary and raise it when I sit down, if its bad! I still wear stilletto heel shoes though when I’m going out – so it’s not all doom and gloom!! Over the last year or two the ankle joint has ached increasingly – particularly in cold or damp weather – so I think I have developed arthritis in it.
I now see Steve Cannon on the NHS – usually at the RNOH (Royal National Orthopaedic Hospital), Stanmore, Middlesex. Previously I had private medical insurance but the cost of my treatment got too expensive for the insurance company – and they cunningly put the annual charge up so high, I could no longer afford to stay with them. I guess they don’t want people with potentially complicated or expensive medical problems! Fortunately, when I informed Mr Cannon he suggested I continue to see him on the NHS.

Thoughts and Hints for New Patients: Don’t panic! Being diagnosed is good because then you can start to figure out how to treat your condition. It was being in pain without being diagnosed that I found awful and depressing – there were days when I thought I would never walk properly again and nights when I woke in a muck sweat thinking I was going to die.

I believe knowledge is empowering so I recommend you find out as much as you can about your condition so that you can make informed choices. Make sure you’ve got plenty of support (maybe join a support group because they tend to have lots of information and expertise you can draw on.) Don’t just rely on your family and close friends because it can be hard for them too. And finally remember that: COURAGE IS NOT THE LACK OF FEAR – IT IS THE MOVING FORWARD IN SPITE OF IT.

Take care.