Rachel’s Story

Chondrosarcoma at the Humerus
Age at Diagnosis: 22
Year of Diagnosis: 1983
Location: United Kingdom

Diagnosis: I had been complaining about a pain in my arm for about 18 months before it broke when I was playing golf. GPs had suggested a pulled muscle, rheumatic problems an so on but no one had actually touched or felt it.

My arm broke, as I say, when I was playing golf. It appears that the tumour had weakened the bone and it broke just below the site of the tumour. My father took me to our local A & E. It was the Easter vacation so short-staffed and lots of soccer-related injuries in. The pain was referring to my shoulder which when x-rayed revealed nothing.I was given some pain killers and referred for physio. I was in agony. I guess they thought I was overreacting.

Two weeks later, after the physio, I went back for an outpatient appointment and confirmed that I had no pain in my shoulder but that I still had pain in the middle of my arm. This doctor did feel the site and administered a sharp blow to my arm just above the elbow. I screamed out in pain. He sent me for immediate x-ray. I was referred to the consultant who saw me within minutes of the x-rays coming through. He admitted me the following Monday for a biopsy.

He suggested to me what the possibilities were, cyst, benign tumour, malignant tumour. I was revising for my undergraduate finals at the time and he suggested I contact my university and make myself available for surgery immediately. The only available bed was in a gynae ward, which was enlightening! After the biopsy and various body scans I was referred to the Royal Orthopaedic Hospital in Birmingham and put under the care of R.S Sneath.

Treatment: I was prepared for two types of treatment; the preferred option was to take a bone graft from my leg and the second to have a full prosthesis of the humerus with shoulder ball and elbow joint. It was also suggested to me that if the tumour had gone into the soft tissue that amputation would be the only option.

After two more biopsies to determine the size and nature of the tumour it became apparent that the tumour was now growing more rapidly and the prosthetic surgery the only choice. My prosthesis was made by Professor Scales team at Stanmore in Middlesex.

My hospital experience was fine. I was the youngest person on the ward as most were in for hip replacements and the like. I completely lost my self control when the amputation option was pointed out and refused to sign the consent papers. It’s hard when you’re 22! But hey, within a couple of days I realised there really was no other choice, gave my consent and trusted in my surgeon’s ability and integrity.

Recovery: I was discharged within 2 weeks and wore a sling. My father helped me through my physio exercises. He was brilliant and knew how important it was that I was supported. I guess he felt he was able to do something practical too.

I was always left-handed so it could have been so much worse. If I hold a glass in my right hand I could spill it over someone as I have very poor control over the elbow unless I sort of tuck it in.

I cannot raise my arm from the shoulder to put a poster on the wall, say, or wave both hands in the air. Sometimes, even now putting my bra on after swimming, on a still-slightly-damp-body, can be difficult. My scar runs from the top of my shoulder to below my elbow and is quite noticeable.

Life Now: My problem now is that I sometimes get pain, particularly in my elbow. This is because my ‘bushing’ is wearing out. (apparently a sort of plastic component that facilitated movement). This will need to be replaced eventually but I am putting this off for a while because…

I have two young boys aged 5 and 3 who need to have lots of cuddles and kisses from their mommy. I don’t want my bushing replaced until they can at least do their seatbelts themselves/ bathe by themselves. You get the picture.

I teach at a local secondary school, (personal development or sex ed. if you like). I am completing a post-graduate diploma in Psychology at the end of this month (May 2005). I am married, my husband works in London though we live in Cumbria (Lake District UK).

Since my operation I have worked in Spain and Hungary teaching English. I sang in a nightclub in Spain with the Javier Garrialdi Trio. I still play golf (though not as well and not very often). I play the organ at my local church (more style than substance). I used to play keyboards with a reggae band in East Anglia. I am a Magistrate on the Carlisle and District Bench.

I have put out my beehive and am just awaiting some bees… just need some warm weather. I am not house proud, spending time with friends and family, laughing, good conversation, food and so on and some time for myself are more important to me.

Every year I celebrate my successful outcome, last year we even had fireworks (21 you see!). We call it my Special Day and I usually have a card from my mother and treat myself to something that I so obviously deserve! (Champagne, a book, some can’t live without Clarins product for example).

It was definitely worth it. I still have checks every two years. I expect I’ll be back to Birmingham in November. Mr Sneath died earlier this year and the man who was his Registrar when I went through my procedure is now the senior man and one of only 4 in the UK doing this sort of work I believe. So, right place at the right time. I’ve always been lucky like that.

Thoughts and Hints for New Patients: It is very difficult to accept, especially if you are young with your whole life ahead of you. Techniques have improved within the last 20+ years as have detection rates.

Ask questions and consider all your options. Try to make sure that you are referred to the best possible team for you. Afterwards focus on what YOU want from your life, then go for it!