William’s Story

Ewing’s sarcoma at the spine
Age at Diagnosis: 26
Date of Diagnosis: 2007
Location: Missouri
Hospital: Boone Hospital Center
Team: Dr. Ramadoss and Dr. Ryan

Diagnosis: I started having back pain in June of 2007. I am a warehouse worker, and just assumed that I had pulled a muscle. I called my doctor and he prescribed a muscle relaxer and did an x-ray, which was negative. The pain was intense enough to send me to the ER in early June, and the doctors did a scan because it looked to them like a kidney stone. The scan was negative, so they sent me home with a prescription for Vicodin and told me to rest. I spent the whole month of June with pretty severe back pain, and started taking more and more of the Vicodin.

I went back to the ER in mid-July, and they scanned again for a kidney stone. The scan was again negative, but they saw some spots in my lungs that weren’t there on the first scan in June. The doctors assured me that since I live in Missouri, it was normal to have scar tissue in my lungs, and that I shouldn’t worry about it. They said to continue the Vicodin (which I told them wasn’t working), and I went home. The next few days were agony- I started having a numbness in my left flank and into my left groin, and I didn’t sleep at all because it hurt so bad. Two days after I went to the ER, my legs started jumping in bed on their own. My wife called the doctor immediately and they ordered an MRI of my spine in the afternoon. 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

Sara’s Story

Chondrosarcoma at the distal femur
Age at diagnosis: 28
Date of Diagnosis: May 2005
Location: Colorado
Surgeon: Dr. John Healey
Hospital: Memorial Sloan Kettering Cancer Center in New York City

Diagnosis: In April 2005 I was just finishing up an 8th month yoga teacher training program when I finally decided to see a doctor about a lump on my outer left thigh, a few inches above my knee. It had started to interfere with my yoga practice, and caused pain along my ITB. I went to an orthopedic doctor who took a few x-rays, saw the lesion on my bone and told me that it was a TUMOR; I couldn’t believe it. He went on to say it probably wasn’t anything serious, but that I needed to see a specialist in orthopedic oncology. I remember walking out onto busy Madison Avenue; it was a windy day and my x-rays blew out of my hand, out of their envelope and onto the street. I was so startled by the news and as I chased down my x-rays, I knew something in my life has seriously shifted. Read more

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

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

Terry’s Story

Fibrosarcoma at the Nose
Age at Diagnosis: 20

At 20 years old, life was smooth sailing. I was a junior at the University of California at Berkeley, a confident, athletic, successful student. Some even considered me handsome. I was living life on “easy street.”

But that year, several people began to ask if something was wrong with my nose. My right nostril appeared to be flared out. I eventually took notice of a bump pushing against my right nostril, and when it didn’t go away, I made an appointment with a doctor. After telling me it was probably a pimple, when it didn’t disappear three weeks later, he finally suggested a biopsy. Read more

Christina’s Story

Chondrosarcoma at the pelvis
Age at Diagnosis: 26
Date of Diagnosis: November 2005
Hospital: Methodist Hospital in Houston
Team: Dr. Rex Marco

Diagnosis: All my life, I’ve been a very active person. So when I started to have pain in my pelvic area, I thought I just overworked myself in the gym or working out. I had decided to go to the gynecologist to discuss getting birth control, since I didn’t want to have any more kids and was happy with the two I had. And I hadn’t gone in a few years. So when it was time to do a pap smear, they told me that they could not put in the forceps. I thought maybe I was just nervous. Then the ultrasound machine came out and they found a large mass in my pelvic area. I thought, “Am I pregnant?” No. This was no baby, but a tumor the size of a soccer ball. I still didn’t make a big deal out of it, and acted as I usually did. I thought “Hey, I’m as healthy as can be!” Well, ironically, on my birthday a couple days later I received an alarming phone call from the doctor informing me that he was pretty sure I had something called chondrosarcoma and I needed to go straight to the hospital for emergency cat-scans. I never knew what lay ahead of me from that day forward. After several cat-scans and MRI’s, they told me that I had a cancerous tumor and needed to amputate my right leg and soon. I was shocked. But I decided to get a second opinion and drove across country to where my family lived and found another surgeon who said he would try to save my leg, and my life. Read more

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