Deborah’s Story

Deborah, periosteal osteosarcoma survivorPeriosteal osteosarcoma at the tibia
Age at Diagnosis: 20
Date of Diagnosis: 1993

I began having leg pain in 1992 when I was 20 years old.  It was a strange pain that I would notice when I was pressing my foot on the accelerator in the car.  I had a bone scan that showed a hot spot on my tibia.  I was diagnosed with a “stress fracture” and ran around in a cast, a boot, and a leg brace for almost a year with no improvement.  A tiny lump started to appear in my x-rays and my doctor felt it was probably new bone growing in to repair the fracture.  The lump grew VERY rapidly and I was referred to an orthopaedic oncologist. Read more


February 15, 2009 in Osteosarcoma Stories, Recently Added
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Charlene’s Story

Charlene, osteosarcoma survivorOsteosarcoma at the Distal Femur
Age at Diagnosis: 25
Year of Diagnosis: 1996
Location: New York State
Surgeon: Dr. Dempsey Springfield (now practicing in Boston)

Diagnosis: I was diagnosed on May 22, 1996 at the age of 25 with osteogenic sarcoma of my right distal femur. My diagnosis came 2 days after a bone biopsy. My story goes like this:

In the summer of 1993, with visiting family in CA, a sudden sharp pain overcame me along the back of my right knee/thigh area. The pain came and went so I didn’t think much of it. Thought maybe just a strain or stepped wrong. Upon returning home the pain worsened and I figured better safe than sorry so I went to see an orthopedic specialist. After visiting 2-3 different orthopedic doctors a small bone tumor was revealed through x-ray and then confirmed by an MRI in April 1994. At the time it was felt to be a benign non-ossifying fibroma. Read more


February 5, 2009 in Osteosarcoma Stories
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Cari’s Story

Cari, osteosarcoma survivorOsteosarcoma at the Proximal Tibia
Age at Diagnosis: 28
Year of Diagnosis: 2003
Location: California
Surgeon: Dr. Phil Wirganowicz, Oakland, CA

I actually knew I had a tumor in my leg, because when I was 12, I cracked it while I was running. The specialist at that time said that it was benign and not to worry about it, because something that is benign would not turn malignant; so life went on. In January of 2003, my shin and knee were extremely swollen and I began to have daily pain that would even wake me up at night, but being the stubborn person that I am, I didn’t actually go into the doctor and complain until June 2003. Eventually I was referred to a specialist who (in August) said the best thing to do was a biopsy so we know what we were dealing with. A week after the biopsy I was told it was Osteosarcoma. I was actually told on a Friday and by Monday I had an Oncologist, was in the hospital on Wednesday having a catheter placed in my chest and was to report on Monday morning for my first round of chemotherapy. The first day of chemo was September 19, 2004. WOW what a week! The initial tests done were an MRI, CT scan, Bone Scan and many different X-Rays. It all happened so fast – I actually don’t know how I handled it. Read more


February 5, 2009 in Osteosarcoma Stories
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Kelly Marie’s Story

Ewing ’s sarcoma wrapped around the spine
Age at Diagnosis: 29
Date of Diagnosis: January 1996
Location: Southern California
Hospital: City of Hope

Hello, I am a 10 year Cancer Survivor. The medical term for my cancer is Ewing Sarcoma: peripheral primitive neuroectodermal tumor.

My journey begins with a layer of denial. The year of 1995 involved hours with orthopedic doctors. My lower back pained me but they said it was all in my head; stress was the diagnosis. I’d exercise more, take 8 vicoden a day, and be back in the doctor’s office for a shot of cortisone. January 26, 1996 I called my parents. My dad answered, I wished him happy birthday and asked to speak to my mom. Mom got on the phone, I told her I refused to take anymore pain killers. The pain had reached such agony I needed their help to get me to an emergency room. The pain was so great I couldn’t walk on my own.

Mom and dad drove me to a nearby emergency clinic where I was swept right past others to the back. My vital signs were a concern to the intake nurse. What are the odds that the ER doctor that day was the same doctor I’ve been seeing for the last year, the cortisone, and vicodin man. He actually acted upset and asked me what I wanted? Turning to my mom, I asked her to get me back home now, keep me alive for the weekend while I searched for a better reputable doctor. By Monday the insurance company allowed me to be seen by a neurosurgeon, that evening, at 5 pm. Read more


January 31, 2009 in Ewing's Sarcoma Stories
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Emily’s Story

Ewing’s sarcoma next to the spine
Age at Diagnosis: 29
Date of Diagnosis: 2006
Hospital: Mayo Clinic

Diagnosis: I was diagnosed with Ewing’s sarcoma at age 29, six months after my marriage to my partner Elizabeth.

I have to know things for myself before I can really hear it from others and this is how it was with cancer too. I was working with various healers on my growing pain for months and there were many times where people in the medical field had a chance to catch my illness but didn’t. I had a significant dream and some intuitions but I didn’t know how to trust them. Finally we noticed that my eyes were dilating differently from each other (nerve damage from the tumor that went unnoticed for months), and I went into action.

I believe that it was hard for other people to see what was happening because I wasn’t ready to show them, let alone show myself. I have directed the shape of this journey the whole way, taking in the information available to me as soon as I was ready and then responding with my best. Read more


May 31, 2008 in Ewing's Sarcoma Stories
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Brian’s Story

Brian, parosteal osteosarcoma survivorPeriosteal 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


May 28, 2008 in Osteosarcoma Stories
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Katie’s Story

Katie, osteosarcoma survivorOsteosarcoma at the distal femur
Age at Diagnosis: 21
Date of Diagnosis: February 2007
Location: Near Halifax, United Kingdom
Hospital: St. James University Hospital
Team: Dr Dan Stark, Dr Tillman and Dr. Grimer

Diagnosis: I had been having pain in my knee for 4 – 5 years. I went to my GP for the first time about my knee in January 2004 and he referred me directly to physio without doing any tests or x-rays. I tried that physio for about a year but due to moving house and the exercises not doing a thing I gave up. The pain was still getting worse so yet again I went to my GP who again referred me to physio in August 2005 (yet again without any tests) and was told basically to do the same exercises, which I stuck at for another year but again gave up due to moving house and stuff, plus it was still getting worse not better. Over Christmas 2006 it was getting worse, I could hardly bend it, was very swollen and extremely painful. I went back to my GP who I told I needed this sorting and he agreed to do blood tests to see which department to refer me to at the hospital. Read more


May 13, 2008 in Osteosarcoma Stories
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