Synovial Sarcoma

My name is Stephen. I’m 50. I turned 50 this year. I was 37 when I was diagnosed. I live by myself. I worked in a government job in a contact center. I was diagnosed. It started, I’ve had problems with my knee for a really long time. I injured back in university several years ago and it was never really the same since. I had been having problems with it on and off and it was swollen and it was difficult to walk. It was giving me a lot of pain.
I moved here to Toronto in 1998. I found a doctor in ’99 who thankfully looked at it and basically said that’s not normal, I am sending you to see somebody. That started the ball rolling fairly quickly. He put me in touch with a sports medicine clinic and that was sort of like a back door into the system. The sports clinic looked at it and went, “Yeah, that’s not right.” They put me in touch with a knee specialist who put me in touch with an orthopedic Oncologist who was able to do a biopsy and get the results at the end of 1999, in December. I had the cancer diagnosis by the end of February that year.
Synovial Sarcoma.
Synovial Sarcoma is a very rare soft tissue cancer found often in the joints of, apparently young men who are tall or long boned, are the most often effected by it. The one other person that I know of who had it was Robert Urich, the actor.
That was what he died from, synovial sarcoma.
The initial treatment is radiation to minimize the growth and to provide apt and clean margins. I spent five weeks doing radiation treatments. I was still working. I was actually working at a bookstore at the time and I would leave work and go and get my treatment and come back to work. It was, yeah, it was very straight forward. They made a couple of little tattoo marks so that they could line up the machine and then you went in and it buzzed for a minute or two and then you were done. We did radiation initially, basically because the primary sites don’t respond well to chemotherapy. It’s only once it metastasizes that chemotherapy is brought into play, which is what happened with me. I had the radiation for five weeks, recuperated for six weeks and then had surgery in May of 2000.
They basically had to remove almost all of the joint, part of my quad muscle as well on the left side. They put in what they call a COT prosthesis and they had to use a part of my calf muscle to replace the part of the muscle that was missing and then they skin graphed it over the top with skin from my thigh. I was in the hospital for three weeks. Eventually … I was on crutches and couldn’t bare weight for three months. Then I did physical therapy for a grand of total of about 9 months. The first four months of that was two hours a day, five days a week.
Then got up on my feet, was walking around and then on my one year check up they found the cancer in my lungs. That was 2001. I did five cycles of chemotherapy and then had surgery to remove the tumors.