Jennifer’s Story

Osteosarcoma at the Proximal Tibia
Age at Diagnosis: 13
Year of Diagnosis: 1989
Location: Florida, USA

Diagnosis: I was thirteen and active in dance and track without a worry in the world, until my right knee started aching. It continued and worsened and my parents thought I had torn a ligament, but unfortunately that wasn’t the situation. I had a MRI and they found a grey area, then I went to the hospital for a biopsy which showed it to be malignant, and almost instantly I was put in the hospital to start my chemo treatments. This was the most awful experience. I wouldn’t wish it upon anyone, especially a teenager. I had no clue as to what was happening. I didn’t even know I would lose my hair until it started to fall out. I wasn’t the nicest child; I didn’t understand why this was happening to me and I was quite bitter at the time. Read more

Jessica’s Story

Osteosarcoma at the Humerus
Age at Diagnosis: 15
Date of Diagnosis: 1988
Location: Washington D.C.
Hospital: Children’s Hospital

Diagnosis: In June of ‘88 (when I was 15 years old) I’d been having pain in my left arm — I thought I’d been hit by a softball and that’s what was causing the pain. Luckily, we were sent to Children’s Hospital pretty quickly and within just a couple of days I was diagnoses with osteosarcoma of the left humerus.

Treatment: I had 2 rounds of pre-op chemo (cisplatin and adriamyacin), following by an 8-hour limb-salvage operation where they removed almost my entire humerus and replaced it with a metal prosthesis. They rearranged all my muscles and removed the deltoid muscle. 4 more rounds of chemo followed. Read more

Kellie’s Story

Ewing’s Sarcoma at the lung / ribs
Age at Diagnosis: 18
Year of Diagnosis: 2004
Location: West Virginia
Physicians: Dr. Torres and Dr. Joshi

Diagnosis: In January 2004, I always felt sick. I kept a temperature, it hurt to breath, and I didn’t eat much. My doctor kept me on antibiotics for months. He did chest x-rays looking for broken ribs or maybe pneumonia but always told me nothing was wrong. After awhile he started telling me it was all in my head. In March he did a thyroid test and it came back normal. Three weeks later when they repeated the test it was extremely off. So he put me on Synthroid. But nothing changed…then my right rib cage started swelling and was painful to the touch. There was a large mass. My doctor still said it was in my head. Up until August of 2004 I started to believe it. Then I went to see a surgeon I had seen in the past. From my signs, symptoms and history she told me that day she believed it was malignant. She sent me for blood work and scheduled my biopsy. Less than a week later my results were back and I was back in the hospital getting a central line placed. Read more

Ad’s Story

Ewing’s Sarcoma at the Distal Femur
Age at Diagnosis: 17
Year of Diagnosis: 1978
Location: The Netherlands

Diagnosis: It started with pain in my left leg, above the knee. Every approximate six weeks the pain came together with a swelling of the leg. Every time the pain and swelling disappeared after a couple of days. Since it always seemed to appear just before a weekend, I did not go to the doctor the first times. I tried to keep on walking and doing all the things I normally did but the pain became worse and worse so I had to rest more and more. And so I went to the doctor.

Treatment: In May 1978, a piece of the bone was removed for research. There never came a clear result and they lost the piece of bone. In October 1978, a second piece of bone was removed. At that time, a professor from Leiden (Netherlands, where I live) attended the operation and the orthopedic surgeon and his teacher (the professor) decided how much they would remove from the bone. At that time they did not know it was cancer. Read more

Thomas’s Story

Chondrosarcoma at the Distal Femur
Age at Diagnosis: 19
Year of Diagnosis: 1979
Location: New York State

Diagnosis: I had hurt my left knee playing rugby at college. I got an x-ray for that, and was called back to see the orthopedist who rounded at the college. He had seen a shadow on the femur, just above the knee area, which he thought was suspicious. The radiologist did not read it as abnormal. A follow-up bone scan and subsequent CT scan delineated a very active soft-tissue tumor eroding bone.

In January 1980 during break, I had an excisional biopsy under spinal anesthesia. I woke up during this to feel the vibrations from the ortho hammering on a chisel into my femur. As it didn’t hurt, (and likely with the help of some added sedation) I went back to sleep.

The result came back as chondrosarcoma. I looked everywhere for information, but even in university libraries and medical center texts, there was little to be found. I waited from Feb to June for treatment, basically freaking out – problems with mood and ETOH – which in retrospect (and after some cognitive therapy) I can mostly attribute to fear and anxiety. This stemmed more from fear of amputation than fear of death. Read more

Jean’s Story

Chondrosarcoma at the proximal femur
Age at Diagnosis: 17
Date of Diagnosis: December 1971
Hospital: Memorial Sloan-Kettering in New York City

Diagnosis: I first had complaints of bone pain at around age 13. I was examined by an orthopedist and various possible causes (including one leg being longer than the other or “growing pains” from a rapid growth spurt) were eliminated – though no definitive diagnosis was made. A fluke accident 4 years later led me to the emergency room for a hip x-ray. At that time something thought to be a bone cyst was revealed. This was in July/August 1971. Read more

Shannon’s Story

Osteosarcoma at the fibula
Age at Diagnosis: 19
Date of Diagnosis: May 2005
Location: New Zealand

Diagnosis: I live in Wellington, New Zealand, was 19, do Tae Kwon Do, and was seeing a physio in Feb 05 for my left leg injured during training, suddenly my right leg started throbbing at night got hot and was swelling up.

I was seeing the physio a few days later so asked him to look at my other leg, he immediately sent me directly to the doctor (like he phoned and said I was on the way now) then he phoned my mum and asked her to meet me at the doctors. My own doctor was away so I saw a locum who sent me directly to the emergency room. Read more

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