Diagnosis: I hurt my shoulder in the spring of 2006 playing basketball with my daughter. I went to the orthopedic surgeon, as I figured it was either a shoulder separation or rotator cuff problem. The doctor took x-rays, and said he thought it was shoulder instability, or weakened muscles from years of overuse playing baseball and volleyball. He prescribed several weeks of physical therapy that seemed to help for the rest of that year. I mentioned this to my family physician during my annual physical, and said that as long as I could handle the pain, that surgery should be avoided. He knew from personal experience that shoulder surgery was difficult and the rehabilitation was quite painful.

By the spring of 2009, my pain was increasing, and again I asked my family physician during my annual physical about when you decide it was time to take the plunge and have surgery. He asked me if the pain kept me awake at night, to which I replied, “Yes.” He told me then that it was time to do something. After my physical, I arranged to see the same orthopedic surgeon from two years earlier…figured I needed rotator cuff surgery.

X-rays showed bone growth on my scapula that wasn’t on the x-rays from two years prior, which indicated a previous fracture, so they wanted to do an MRI to see both, the bone growth and my rotator cuff. After the MRI, they said they wanted to refer me to an orthopedic oncologist (I didn’t know there was such a thing) to do a bone biopsy on the bone growth to be safe. It was diagnosed as a level 1 Chondrosarcoma approximately 7 X 7 X 5.2 cm tumor on my scapula.

Treatment: I was provided with two options. One was called the Tikhoff-Linberg procedure, where they remove my scapula and shoulder joint, and tie all the muscles back into my clavicle. The other option was a complete shoulder replacement with a titanium prosthesis. On August 15th, 2008, I had the complete shoulder replacement.

Recovery: I was placed in an immobilizing sling for 4 weeks, and then released to do physical therapy on my own, being that I had done physical therapy two years prior.

Life Now: Currently, at 6 months post-op, I have relatively good use of my arm. As long as it is below my chest and near my body, I can lift approximately 50-75 lbs. I will never have motion above my head, but can handle all of my everyday needs from my chest down. I have hopes of attempting to play golf within the next couple of weeks. I have tried to stay positive and keep attempting new things everyday.

Diagnosis: Almost 1 year before diagnosis, I had pain in my left sholder (scapula). Eventually went to an orthopedic specialist who said it was bursitis. Had 2 cortizone shots. Didn’t go away. I was in my first trimester of pregnancy. Doctors continued to say bursitis. Seven weeks from due date, I went to family doctor asking if there was anyting else I could take for pain besides Tylenol. Well, to make a long story short, I had x-rays and biopsy locally. Doctors said it was cancer but didn’t know what kind. They sent me to Mayo Clinic. (Pregnancy complicated things!). On 2/14/83, I was diagnosed with Ewings sarcoma (I was 21 years old). On 2/16/83 my son was born at Rochester Methodist Hospital in Minnesota. He was induced; 4 lbs. 1 oz. Healthy, just needed some fat on him. On 2/17/83, I had scans and bone marrow biopsy. On 2/18/83 I started my first chemo treatment. On 2/21/83, we headed home! This is a short version of a long story!

Treatment: I did not have surgery. The doctors decided to leave me my arm and scapula! Chemo shrunk the tumor enough. I had radiation for 6 weeks. Had chemo for 10 months. I think it was called MAP: Mitomycin C, Adriamycin, and Cisplatnum. This was for the first 3 months. Then the last 7 or 8 months was VCR, CTX, DACT, ADR, DTIC (don’t remember what all of them stand for). The Mayo Clinic was fantastic. I continued follow up for 14 years.

Life Now: I am a survivor! I do have some limited mobility in my left shoulder and arm but I thank God that I am alive. I was diagnosed in August 2005 with breast cancer. This may be a secondary cancer since the tumor was on the left side in an area that was radiated long ago. There is not history of breast cancer in my family. However, I am doing well after surgery and half way done with chemotherapy.

Life is great! 6 1/2 years after my son was born, I had a daughter. My children are now 22 and 16. I have been employed at the same place for 25 years. I am active at work, in my children’s school lives, on local district school board, and church.

Thoughts and Hints for New Patients: Ask questions. Get answers. Have faith in God.

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.