Max’s Story

Chondrosarcoma at the Scapula
Age at Diagnosis: 43
Date of Diagnosis: May 2001
Location: California

Diagnosis: In 1994, while lifting weights, I thought I had torn something in my right shoulder. I was sent for x-rays and the report indicated the results as “normal”. The diagnosis was a tear in the rotor cuff. The shoulder continued to give me problems during the next 7 years. Any time I had it looked at again, I was sent back to physical therapy, same diagnosis and no further x-rays or MRI’s were done. I finally decided to get it taken care of once and for all in March 2001. New x-rays were ordered and this time results came back as fibrous dysplacia of the scapula. More PT for about a month. No improvement so I was referred to an orthopedic surgeon. He saw a problem with the x-rays right away and said I had a lesion on my scapula. He also viewed the x-rays from 7 years earlier and indicated the lesion could be seen on those x-rays. He ordered a CT scan and the preliminary diagnosis from that was chondrosarcoma. I was referred to Dr. James Johnston, orthopedic oncologist at UCSF and he agreed with the diagnosis as chondrosarcoma, probably grade I. A biopsy confirmed malignancy and an MRI showed the size of the tumor at 10″.

Treatment: Before treatment options were discussed, more CT scans and MRI’s were done to rule out metastasis. All tests came back negative. Various surgery options were discussed as treatments while chemo and radiation were completely ruled out. Worst case was a complete amputation of my right shoulder and arm. I opted for limb salvage surgery with a prosthetic implant. I had my surgery July 16, 2001, my scapula, half of my clavicle and a few of the rotator cuff muscles were resected. A one of a kind prosthetic scapula and stem were implanted. The surgery was 10 hours and 14 units of blood were transfused. Hospital stay was expected to last 7 days or more but recovery was much quicker. 3 days later and I was home. Pain was minimal and the right arm was to be immobilized for 8 weeks. The staff at UCSF was outstanding.

Recovery: The prosthetic implant was designed more for a cosmetic than a functional purpose although the results were unknown since it was being used for the first time. My prognosis was 10-15 percent chance of recurrence and my range of motion 10-20 percent. Physical therapy was not possible since muscles were resected and rearranged to accommodate the prosthetic. I was also told that it was very unlikely for me to ever play golf again. Rehabilitation would be on my own discretion and pace. I played golf for the first time in March 2002, 8 months after surgery. My range of motion 12 months post op was 45% and I could comfortably lift 50 lbs.

Life now: My 4 year follow-up in August 2005 showed no indication of recurrence or metastasis. My progress leveled off after 2 years but my golf game is steadily improving.

Thoughts and hints for new patients: What has helped me the most is to focus on the things I can do and not my limitations and my physical shortcomings. I’ve learned that the body and mind will make adjustments to minimize the limitations.