Brian’s Story

Periosteal osteosarcoma at the proximal femur with recurrence and lung mets
Date of Diagnosis: February 2004
Age at Diagnosis: 24
Location: Illinois

Diagnosis: I began having shooting pains in the fall of 2002 in my right femur while I was attending college full-time at the University of Kansas. I was an active 22 year old at the time and had no reason to suspect that there was anything wrong. I loved to run, was always pretty active and never felt any physical limitations growing up as a kid.

After steady pain, I decided to make a visit to my general physician and see if he could provide any insight into the pain. He said he thought that I might have a “baker’s cist” behind the knee and an MRI would tell us if that was the case. Read more

Maria’s Story

Chondrosarcoma at the pelvis
Age at Diagnosis: 38
Date of Diagnosis: 2007
Location: Saratoga Springs, New York
Hospital: Dana Farber Cancer Institute/Brigham & Women’s
Surgeon: Dr. John Abraham

Diagnosis: I pulled a groin muscle coming off my horse in the spring of 2007. After two months of physical therapy, it was not getting better. If I did any exercise above and beyond PT, it was difficult and painful to walk. I visited my local orthopedic surgeon and he took and x-ray of my pelvis. You could see a mass on the left superior ramus down the tubercle almost to the sits bone. After an MRI and fill body bone scan, I was referred to an orthopedic oncologist in Schenectady. He initially thought it was fibrous dysplasia, and wanted to do a bone graft and bone biopsy, to make sure it was not cancerous. The biopsy came back chondrosarcoma. Read more

Omar’s Story

Sarcoma at the pelvis
Age at Diagnosis: 44
Date of Diagnosis: November 2004
Location: Toronto, Canada
Hospital: Mount Sanai Hospital
Team: Dr. Blackstein and Dr. Wunder

Diagnosis: I was first diagnosed in November of 2004. It was Sunday morning and I went for a10k run as I do every three days of the week. After the 6k, I felt a sharp pain in my pelvis. They did an x-ray on my pelvis and then asked me to go and see specialist. One week later I was asked to have an MRI of my pelvis.

Three weeks later, I was told I have cancer. At first I could not believe what I heard. Then I knew I had to deal with the reality at hand. Read more

Nicky’s Story

Ewing’s Sarcoma in soft tissue near the pelvis
Age at Diagnosis: 23
Year of Diagnosis: 2000
Location: New York State

Diagnosis: I found the lump in June and my doc told me it was nothing to worry about. So as it got bigger and started to hurt more I went back and then she sent me off for tests. I found out September 13 that it was cancer, and that they just didn’t know what kind. After losing my slides I finally found out what kind, and started chemo in December (Merry Christmas to me). What a present I got – I lost all my hair two days before Christmas.

Treatment: Well my surgery was scary. I had to learn how to walk all over again. And I had an 18 month old to take care of. I wonder many times why is this happening to me. I just was feeling better after having the baby, depression after having her, and now this. My treatment started in December, and it lasted for 6 months. I had to do two days of chemo with three weeks off, and then 5 days of chemo with three weeks off for six months or so. 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

Elizabeth’s Story

Dedifferentiated Chondrosarcoma (IIB) at the Pelvis
With lung mets
Age at Diagnosis: 22
Year of Diagnosis: 1967
Location: California

Diagnosis: I first saw a doctor at age 16 for lower belly pain. X-rays showed a lesion then but it was mistaken for an old fracture. I was treated for “constipation” and sent home. I ignored the pain problems until I had my first child. During labor the doctor determined that I had tumor in the way of the birth canal and delivered Caesarian Section. It was believed the tumor was benign. I didn’t know to question this until a couple years later when I could feel tumor growing outward. An orthopedic surgeon removed it without sufficient margins, believing it to be benign. Two and a half years later it had grown so large that it interfered with walking, and standing for any length of time. Deep aching pain awoke me at night. I saw a local orthopedic doctor who took an x-ray and told me I was just overweight. But, what I saw on the x-ray looked like a big cauliflower, so I went for a second opinion to another orthopedic surgeon in town, who immediately referred me to an orthopedic oncologist at the University Hospital in the nearest big city. I didn’t want to go that far until this doctor warned me that this was “serious”, and I “Must” go see this other doctor. I still, at that time did not understand that it was anything more than the hereditary bone bumps I was born with. Read more

Elaine’s Story

Myxoid Chondrosarcoma at the Pelvis – with lung mets
Age at Diagnosis: 52
Year of Diagnosis: 1999
Surgeon: Dr. Alan Yasko, Houston

Diagnosis: After several months of pain down my left leg which was similar to the pain I had in 1983 from a ruptured disc, I went to see an orthopedic in October, 1998. He made x-rays in his office and told me that I had a “calcium deposit” in my left hip area and the pain was just something I would have to “live with.” He suggested I see a pain management doctor for possible injections. As long as I was up moving, my pain was less, so I began walking 3 miles 4 or 5 times a week. I found I could not sit on the floor or in a metal chair as within minutes the pain would become unbearable. As 1999 came, my pain progressed to the point that my nights were spent in a recliner as I could get enough relief to allow a few hours sleep. Over-the-counter meds such as ibuprofen and tylenol were taken on a regular basis. By May, 1999, I could feel a significant growth near my waist on the left wide just above my pelvic bone. Sitting was becoming very painful. I quit my job in June, 1999, as it involved sitting at a computer for hours. As the summer passed, the pain became almost constant and the area near my waist became larger. On October 14, 1999, I had an appointment with the neurosurgeon who had performed my previous back surgery. I told him that “I can’t live like this.” He recommended that I have an MRI done. [My first granddaughter was born on October 13, 1999.] The MRI was done and I returned to the neurosurgeon’s office about October 20, 1999, when I received the news that there was a very large mass in my left pelvic area. A needle biopsy was scheduled within the next couple of days. The diagnosis was chondrosarcoma. An appointment was made for November 9, 1999, at M. D. Anderson Cancer Center with Dr. Alan Yaskco, Chief Orthopedic Surgeon. Surgery was scheduled for November 29, 1999. Read more

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