John’s Story

Chondrosarcoma at the Proximal Humerus
Age at Diagnosis: 33
Date of Diagnosis: 1993

Diagnosis: I was experiencing left shoulder pain and weakness for a few years, so in April 1991 I went to an orthopedic doctor for evaluation. The doctor took an X-ray and stated that it was tendonitis due to weightlifting and he gave me a prescription for Naprosyn. I had been a weightlifter since my teenage years, so this seemed logical to me.

Two years later (April 1993) I was experiencing increasing pain in the same shoulder and I was unable to weight lift. I had tried numerous times over the 2 year period to weight lift, but the pain in my shoulder was so intense that it would take two weeks to go away, and my strength was down 80% in the shoulder. If I picked up anything heavy with the affected arm, the pain would become terrible and I would lose most of my shoulder mobility for a few weeks.

I then decided to go to another orthopedic doctor thinking that I had a torn rotator cuff from weightlifting. I took along my original X-rays and the doctor noticed something on them, and when he took new X-rays, the change was obvious and more of my humerus was affected by the chondrosarcoma compared to the original X-ray.

They did not have a diagnosis at that time, but arranged to do a biopsy (May 5, 1993) which showed chondrosarcoma of the left proximal humerus. I had bone scans, CT scans and an MRI which showed it had not spread. I had to wait 2 weeks after the biopsy before I was given the diagnosis, which was a difficult time. I was told that most likely it was not cancer initially before the biopsy, so the diagnosis shocked my and my family.

I then had surgery the first week of June for the condition.

Treatment: I had a resection of the left proximal humerus, and a titanium rod and an allograft (with rotator cuff) were used to try to keep some function to the extremity. No chemo or radiation was used. Portions of my shoulder muscle, pectorals, and bicep were removed during the surgery.

My arm was in a sling for three months. The hospital experience was not too pleasant, I spent 5 nights in the hospital and experienced severe pain and swelling of my left arm during my stay. After my discharge, the swelling went away within a week. I then had the routine scans, 3 months apart and then twice a year and finally once a year.

Recovery: My arm/shoulder were immobilized in a sling for 3 months, during that time period I did basic stretching and some shoulder strengthening until I began physical therapy.

I began to make excellent progress with the physical therapy, and muscle mass returned to my biceps, triceps, back and the shoulder muscles that remained. Part of this progress was due to my weightlifting background. I was motivated to exercise and defeat the chondrosarcoma. After I completed my physical therapy I continued working out with a weight machine with tremendous strength gains and an increase in muscle mass.

However, approximately 7 months after my surgery I experienced resorption in the area where the donor bone had the rotator cuff, and I lost almost all movement of the shoulder. It was a gradual onset with pain and reduced motion and reduced strength of the shoulder. I experienced occasional periods of swelling in my shoulder and severe pain for about 9 years after the surgery. I still experience pain, but have not had any swelling for the last 4 years.

I was no longer able to use weights, and this was a mentally difficult time. Since I was making such tremendous progress, this was difficult to deal with at first. Before the surgery I had asked the doctor about rejection by my body and was told it was not an issue. I have basically learned to live with the reduced use of my arm, and have learned to work around things get assistance for certain tasks that require full use of both arms.

Life now: My family has been very supportive, and I decided a few years after the surgery that I would not let this ruin my life. I now have a 3 year old daughter, born 9 years after my diagnosis. Initially I was afraid to have any more children (my oldest daughter was 2 at the time of my diagnosis), but I decided I would continue to live.

I have been exercising by doing sit-ups 2 times a week and walking outside when the weather permits. I even started playing the guitar occasionally as therapy for my left arm and forearm and to try to keep some strength in the area.

Thoughts and hints for new patients: For a patient just diagnosed, I would recommend initially getting a second opinion before any surgery and let the facts and your judgment guide you to the doctor you feel most comfortable with.

A positive attitude is best, and I went through many dark days initially, but I can see that now that the best times were when I was upbeat, so I would try to stay as focused and positive as possible and discuss this with other people who have gone through the same thing if possible.

I did not have the opportunity to talk with anyone in a similar situation and I wish I would have been able to do that. People who have not experienced chondrosarcoma may not realize what you are going through. Strong faith and support from others is essential to a successful recovery.