Janine’s Story

Chondrosarcoma at the distal tibia
Age at Diagnosis: 42
Year of Diagnosis: 1995

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 excruciating 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 – I intermittently felt it. I was no longer able to use the trampoline so packed it away and 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. It felt like a rat was gnawing the bone of my leg all the time. During this time (over two years) the Doctor 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 then was 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 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 it was diagnosed and was to be treated the depression lifted.

Treatment: Within a few days I was in hospital 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.

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.

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 10 years later.

Life Now: My life is completely 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, in hot weather or if I exercise a lot. I tend to wear a support stocking on it and raise it when I sit down if its bad! I still wear stilletto heel shoes though when I’m going out!!

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.