Rachel’s Story
Chondrosarcoma at the Humerus
Age at Diagnosis: 22
Year of Diagnosis: 1983
Location: United Kingdom
Diagnosis: I had been complaining about a pain in my arm for about 18 months before it broke when I was playing golf. GPs had suggested a pulled muscle, rheumatic problems an so on but no one had actually touched or felt it.
My arm broke, as I say, when I was playing golf. It appears that the tumour had weakened the bone and it broke just below the site of the tumour. My father took me to our local A & E. It was the Easter vacation so short-staffed and lots of soccer-related injuries in. The pain was referring to my shoulder which when x-rayed revealed nothing.I was given some pain killers and referred for physio. I was in agony. I guess they thought I was overreacting. …Read More
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″. …Read More
Kent’s Story
Clear Cell Chondrosarcoma at the Proximal Femur
Age at Diagnosis: 40
Year of Diagnosis: 2004
Diagnosis: My ‘experience’ started over five years ago, I was extremely active in most sports including running, skiing, hiking and baseball. I first noticed my symptoms as pulled groin muscles that, when I checked with a doctor was told to rest for a couple weeks and slowly work up to your normal activities. I found that the occurrences became more aggressive and I would give the injury more time to heal and be less aggressive at my therapy. In July of 2004 the pain and frequency of my muscle pulls was keeping me from sleeping and I noticed deep muscle and tissue aches. I had stopped running for about a year and my exercise had become minimal for about a year. I’d visited a doctor several times, but now as I look back I didn’t let the doctor diagnose my injury I told him that I knew it was muscle pulls or tares. Finally it got to a point that I could only walk with a more than slight limp and went in for X-Rays. At the time I had switched jobs and was working as a contractor without insurance. After the first x-ray the doctor came in and told me I had a crack in my femoral neck, but that isn’t what I should be concerned with. …Read More
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. …Read More
Jillian’s Story
Chondrosarcoma at the Skull Base
Age at Diagnosis: 42
Year of Diagnosis: 2004
Location: Australia
Diagnosis: I experienced double vision and lack of balance, left arm weakness, memory loss and confusion. If I look back over a period of years I can see problems like a constant noise in the ear (a low pitched noise) and left eye vision problems, but they all seemed to be there. I thought I had a mini-stroke, I was so confused and unable to make decisions.
I waited three days before finally attending the GP, who informed me that I had a middle ear infection and a painless migraine, two days later I returned and was told, it would clear, three days later I re-contacted the GP and was impatiently told ok, CT Scan and Blood work, I received the CT Scan was called to the GP Office that afternoon and involved I had a tumour in my skull base, I would need to see a neurosurgeon and I would have an operation to remove it. …Read More
Jennifer’s Story
Chondrosarcoma at the Distal Femur
Age at Diagnosis: 34
Year of Diagnosis: 2004
Diagnosis: I started having knee pain in October of 2003. I had just had my gallbladder out, and I was afraid that it was a blood clot, but since it never got worse, I waited to do anything about it. It wasn’t altering my activities and was mostly nagging me at night. I finally decided to have it looked at in April of 2004 so that I could deal with it before a busy summer. My PCP ordered an MRI of my knee, thinking it was a torn meniscus. The knee anatomy was unremarkable, but the test caught the bottom of the lesion. Just to be safe, she sent me to an orthopedic surgeon who ordered an x-ray but decided to scope my knee anyway. While waiting to have that scheduled, I got a call from him that he wanted me to have a CT, MRI and bone scan. I’m a nurse and it should have been obvious to me, but denial is a powerful thing. A week later, he called to tell me he wanted me to see his partner. How naive I was! He was kind to me, and after a few minutes told me “I’m an orthopedic oncologist, and you’re here to see me because you have cancer.” I don’t remember much of the appointment after that, although I was there for 2 hours. That was on a Tuesday and on the following Monday, I had surgery. …Read More
Jehuda’s Story
Chondrosarcoma at the Pelvis
Age at Diagnosis: 50
Year of Diagnosis: 2004
Location: Israel
Surgeon: Dr. Franklin Sim, Minnesota
Diagnosis: I saw a doctor November of 2003 and received a final diagnosis in March of 2004. The tests that were done were: Palpation, CT’s, bone scan, x-rays. The diagnosis was: Chondrosarcoma, grade I, inside the abductor muscle of the right thigh, growing from the the right pubic bone, originating from an enchondroma, which existed already for at least thirty years. I first noted problems in 1999, but only when I was sitting uncomfortably on long bus trips. In the fall of 2003, I relatively suddenly got more pains and stiffness in the right groin.
Treatment: Surgical removal in May 2004 (right hemipelvectomy) by Dr. Franklin Sim, Mayo Clinic, Rochester, Minnesota. The tumor was 12cm x 8cm x 7cm. I had a very good experience (10 days). Revalidation in nursery home for the elderly, almost as good as the Mayo clinic (16 days). Stayed an other 14 days with friends, then flew back to Israel. No other treatments. …Read More
