Kyle’s Story

Ewing’s sarcoma at the spine
Age at Diagnosis: 16
Date of Diagnosis: 1986
Hospital: University of Kansas Medical Center
Team: Dr. Sarah Taylor and Dr. Burton

Diagnosis: I first went to the doctor in 1986 complaining of numbness and soreness in my left elbow. They took an x-ray of that arm, and happen to catch the left side of my spinal cord in the film. The doctor was able to see that there was missing and degraded bone centering around my T1-C7 spinal column.

Treatment: I was referred to KUMED for diagnosis and treatment. They did a biopsy which confirmed Ewing’s Sarcoma. For treatment at the time I was on alternating rounds of Cytoxin, Actiniomyacin, Adriomyacin, and Vincristine. I also did Radiation for 9 months concurrent to the chemotherapy. By the time my high school graduation came around in May of 1988 I was free and clear. At least for the next 15 years. Read more

Astrid’s Story

Ewing’s sarcoma at the distal femur
Age at Diagnosis: 44
Date of Diagnosis: 1989
Location: Norway
Hospital: Haukeland Sykehus

Diagnosis: I experienced pain in my femur while sitting on a sofa with my feet outstretched and my son on my lap, so I removed him and ran my hand over the place. I could feel a lump. When I bent my knee it was not so obvious. I had also had pain around my knee when lifting something heavy and walking downhill. So after a few days I saw a doctor and was sent for emergency x-ray on the 15th of September. I was very impressed how quickly it went. Unfortunately everything stopped up for some reason or misunderstanding which I don’t know, and I had to wait for many weeks before the next x-ray. I was a bit desperate and felt myself falling freely. (I am sorry, my English is not good enough). I kept calling the doctor because he thought I would be admitted within a couple of days. Nobody believed it could have been anything serious, but I knew because I had seen the pictures through a partly open door. Anyway I was admitted to the hospital 3rd of November for a lot of tests, and had to wait some weeks for the results. Eventually I started chemo in the middle of December. Read more

Mary Ann’s Story

Chondrosarcoma at the cervical spine
Age at Diagnosis: 42
Date of Diagnosis: 1999
Location: Michigan
Hospital: St. Luke’s Roosevelt
Team: Dr. Chandranath Sen

Diagnosis: I first saw a doctor for pain in my neck. An MRI revealed a tumor. I only waited two weeks for treatment. It was a time of very high anxiety. I did a lot of reading about having cancer and dealing with a new diagnosis of cancer. I also spoke with cancer survivors to learn from them.

Treatment: My surgeon was not able to remove the tumor in one piece with margins so I went for proton radiation. My tumor came back after 5 years. At that time I sought treatment from someone who had experience with chondrosarcoma. I did not know the diagnosis at the time of my first surgery. I had more surgery (2 years ago). That surgery has left me with some ongoing problems but so far the tumor has not come back. Read more

Aaron’s Story

Chondrosarcoma at the proximal femur
Age at Diagnosis: 20
Date of Diagnosis: 1990
Location: Idaho

Diagnosis: I was 19 years old when I was playing soccer. I was running down the field and I heard a snap and then sharp pain coming from my second toe on my right foot. My toe just broke!

I went to a doctor who did an x-ray and said that something was wrong with my bone, it was as thin as an egg shell. He sent me to a specialist who had me go through a bone scan. There they found a sizable tumor in my right proximal femur.

Treatment: I went to surgery in September of 1990 where they removed the bone in my toe and replaced it with a cadaver bone. They curretaged my femur and sent me on to PT. My diagnosis was Encondroma. A benign cartilaginous tumor. Read more

Carol’s Story

Osteosarcoma at the distal femur
Age at Diagnosis: 13
Date of Diagnosis: 1967
Location: Minnesota

Diagnosis: I remember my girlfriend and I were practicing cheer-leading routines as we were about to enter 7th grade and we wanted to be cheerleaders. All of a sudden I hit my knee on my bicycle bar and from that point on, the pain would grow each day. Finally my mom sent me to a chiropractor and he told my mom to get me to an oncologist. The oncologist told my mom that I most likely had osteogenic sarcoma and he recommended that she take me home to die. My family doctor, who was bull headed and stubborn, made arrangements for me to get treatment at St. Mary’s hospital in Rochester MN. Read more

Brian’s Story

Osteosarcoma the Distal Femur
Date of Diagnosis: February 1993
Age at Diagnosis: 25
Location: Massachusetts

Diagnosis: I was 25 years old and working as a police officer in the city of Boston. While making an arrest, I struck my right knee on the ground. I felt a sharp pain shoot up my leg. I was surprised how much it hurt, because I didn’t hit it that hard. I finished the day and went home. I returned at midnight for overtime and my knee seemed fine until I felt more sharp pain while stepping down a small wall and by morning I noticed it was swollen. Best thing I probably did in my life was to write an injury report that day, but naturally I continued to work a double shift. The following day I went to the emergency room. No x-rays were taken and I was told I had a deep bruise and it would be better in a few days. Read more

Andrew’s Story

Osteosarcoma at the tibia
Age at Diagnosis: 19
Date of Diagnosis: 1984
Location: United Kingdom
Hospital: Middlesex-London
Team: Dr Jelliffe, Mr Sweetnam and later, Prof Cobb

Diagnosis: I was born in Zambia in 1965 and am the youngest of three boys. My brothers are quite a lot older than me and used to give me grief when I was little. This changed over the years and they became extra fathers for me, guiding me, or trying to, through my teenage years. My parents sent me off to school when I was six years old; it must’ve been as hard for them as it was for me. Anyway, I continued to go away to school for the rest of my education. I was a normal teenager like any other; stroppy, sometimes rude to one’s elders and betters, but otherwise pretty normal. I played sport for the school, enjoyed the outdoors and probably didn’t do enough studying.

During 1984, my life was going in a steady direction towards a hopeful career in the RAF when everything suddenly fell apart. I started to get discomfort in my right knee. Read more

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