Tom’s Story

Chondrosarcoma at the Proximal Humerus
Age at Diagnosis: 40
Year of Diagnosis: 2000

Diagnosis: I had shoulder pain after exercise that did not get better. After 3-4 months I went to a sports medicine doc. His diagnosis was unclear, so he sent me for an MRI. Monday 9AM, the MRI showed very plainly, a bone tumor in the humerus. An expert in NYC was recommended. Much to my surprise, they took my insurance, and had a cancellation at noon. My MRI drew a crowd of interns. I had a bone scan on Tuesday, which showed only the shoulder as the hot spot. I had a surgical biopsy on Thursday, and was told it was Chondrosarcoma, and we could think before we had to act. Some bone cancers are very aggressive, but I was allowed to go home, and my surgeon was allowed to take his vacation! Regardless of being allowed to wait, my wife and I wanted this removed asap, but also wanted to preserve as much function as possible. The tumor resection was scheduled for a month later.

Treatment: My 8 hours surgery removed the upper 5 inches of my right arm bone, and also the surrounding tissue (clean margins) that might have had chondrosarcoma cells. The bone was replaced with a titanium shoulder prosthesis, with donor bone around that to reattach the shoulder cuff. The intent was to have the titanium for strength, and the allograft to attach the tendons back onto. I also opted for a spica cast, to speed recovery and lower physical therapy. This statue of liberty cast was 8 weeks of frustration, but afterward it was much easier to lower my arm over a couple weeks, than to work in PT to try to be able to raise my arm.

Recovery: I worked with PT for 5 months. I bet I was depressed for 8 months. But by spring 2001, I was coaching little league baseball for the first time, and I was walking on air! About this time, I read Lance Armstong’s first book. Wow, were there a lot of parallels. He had no trouble talking about his emotions, and deep thoughts. And knowing by that time, he had fought back and won the Tour de France was inspiring.

At about 18 months, I felt some problems in the shoulder. It turns out the bone graft was dissolving, and eventually my muscle attachments started to come loose, and my shoulder has gradually lost strength ever since. I can lift my arm using my deltoids, going out to my side, but have no rotator cuff strength. I have learned to compensate with my other arm, and doing things with my elbow at my side.

Since my surgery and subsequent PT, I have had regular chest x-rays to check for lung metastases. And I spent some time investigating my options to improve the shoulder fix. The best shoulder recommendation was a vascularized fibular graft, but the outcome might not be much better than I am now, and I wanted them to leave my leg alone. The chest x-rays started at 3-month intervals, then 6 months, and now as I approach 5 years past, they move to annual checks.

Life Now: This ordeal brought about change. I value the way I live even more. I feel I am always searching for ways to help others, that there was a reason this ordeal ended in a positive way. Still, over time, my life has gradually returned to the same as it was before. I realize at almost five years hence that this tough time has passed, and I mostly want to move on. There was a time I dwelled on not being able to do as much as I had been able to do. But I can attribute parts of that to my triple whammy in 2000. The year 2000 brought a complete job change as part of a promotion, my cancer diagnosis, and my company nearly went under. All three brought about major stress, which is now finally background noise.

Thoughts and Hints for New Patients: It is very important for you to learn as much as you can about your disease, and your treatment options. Please try to find someone to act as your primary advocate, to help you sort through all sorts of things, taking notes at doctor visits, helping work insurance issues, someone to help organize the help with food and home from family and friends.