Katie’s Story

Osteosarcoma at the distal femur
Age at Diagnosis: 21
Date of Diagnosis: February 2007
Location: Near Halifax, United Kingdom
Hospital: St. James University Hospital
Team: Dr Dan Stark, Dr Tillman and Dr. Grimer

Diagnosis: I had been having pain in my knee for 4 – 5 years. I went to my GP for the first time about my knee in January 2004 and he referred me directly to physio without doing any tests or x-rays. I tried that physio for about a year but due to moving house and the exercises not doing a thing I gave up. The pain was still getting worse so yet again I went to my GP who again referred me to physio in August 2005 (yet again without any tests) and was told basically to do the same exercises, which I stuck at for another year but again gave up due to moving house and stuff, plus it was still getting worse not better. Over Christmas 2006 it was getting worse, I could hardly bend it, was very swollen and extremely painful. I went back to my GP who I told I needed this sorting and he agreed to do blood tests to see which department to refer me to at the hospital.

A few days later I phoned the hospital and they got me an appointment for the middle of March. A few days later I got a phone call and they said they had prioritised me and could I go next week. I saw the Specialist Physiotherapist and the Rheumatologist who examined me and asked me to go for an x-ray and blood tests and then to go back to see him. He was talking about drainage and biopsies, but it wasn’t his expertise and he would refer me to his colleague.

A few days later I got a call from the hospital who said they had been ringing all day to try to get me in (this was a Thursday at 16:50) and wanted me in on Monday 5th February 2007 at 9am. They sent me straight for another x-ray of my whole leg and chest (which when questioned was a normality). Then I went to see the Orthopedic surgeon who told me I had a malignant tumor in my knee and the best treatment was in Birmingham so they would refer me there to do further tests ASAP. I felt and still feel very frustrated about the time it took for me to be diagnosed. If it was found and treated 4-5 years ago I’m almost sure it would have been benign and could have been removed without the need for limb salvage surgery or chemotherapy.

Treatment: First I had 10 weeks of chemo, which included Cisplatin, Doxorubicin and Methotrexate. Then I had limb salvage surgery as the tumour had grown in my knee bone. This was a total knee replacement and half my thigh bone replaced with a metal rod (Right distal femur.) About a month after surgery I had a red patch on my right leg, after investigations this was believed to be an infection, so I had an open wound washout to get rid of the infection on the prosthesis. Then I had 30 more weeks of chemo, I was on the Euramos trial so this included more chemo drugs, these were Cisplatin, Doxorubicin, Methotrexate, Ifosomide and Etoposide, these were to see if I had a better response with the extra drugs. I had a poor response to the chemo before surgery so I thought this was a good idea, even though it was stronger, more drugs and meant two months more treatment. I was treated on the adult ward, so this wasn’t very nice. I did meet lots of nice people and the staff were run off their feet but all tried their best. But I would have appreciated being on a young persons’ ward and I think it would have given me more motivation and involvement. I did make friends on the teenage ward (as I was 21, I was too old to stay on the ward) and I was very welcome to use the facilities there, so that was a nice change from the adult ward.

Recovery: I am still having Physiotherapy three times a week and probably need it for quite a while, three months after finishing chemo I feel I’m now progressing more and getting stronger.

Life now: I haven’t managed to get back to work yet, I feel like I’ve still got a lot of strength to regain yet. I’m just taking it slow and enjoying life, short walks, shopping and NO hospitals!

Thoughts and Hints for Patients: Stay strong and be positive, you can get through this!