Tara’s Story
Ewing’s sarcoma at the clavicle
Age at Diagnosis: 30
Date of Diagnosis: November 20, 2006
Hospital: University of Mississippi Medical Center
Team: Dr. Darryl Hamilton and Dr. Scott E. Porter
Diagnosis: I had intermittent pain in my left clavicle beginning in July of 2003. Every three or so months, it would hurt for approximately two weeks. Aleve would always control the pain and it was never unbearable. In March of 2006, my 18-month-old son threw his head back and banged it into my clavicle. It was the most horrendous pain I ever had. Two weeks later, it felt back to normal, but there was a knot on my clavicle. A friend of mine, who is a nurse, looked at it and said it looked as if it had been fractured to her. So my best friend, who is an x-ray technician, took some x-rays. She thought it appeared “funny” – there were black spots all the way down my clavicle. It started a testing frenzy. I was scanned through every machine imaginable, blood & DNA tests were done, lastly a biopsy. It confirmed I did not have cancer, just fibrous tissue.
In July, the regular pain flared up again, and I wanted a true diagnosis. With all of my tests in hand, I was finally sent to an orthopedic oncologist who told me I was the most extensively tested case of either Paget’s Disease or Fibrous Dysplasia he had ever seen. No cause for alarm… Just wait and see over the next year. …Read More
Rachel’s Story
Askin’s Tumor at the spine
Age at Diagnosis: 15
Year of Diagnosis: 1998
Location: Midwest
Diagnosis: I was playing high school field hockey (fall 1998) and my back hurt more and more each day. The pediatrician thought it was from my backpack being too heavy. Then basketball season started and it was hurting even more. One morning I woke up and my feet felt strange. I didn’t think too much of it. The next day my legs and chest were numb. We called the orthopedic doctor (since I was so healthy and only broke my arm once). They said it sounded neurological and gave us names of neurologists. Well one could schedule me in a month, another on Monday (it was Friday). My mom was on the phone with my dad trying to decide what to do and the third neurologist broke into the phone line and said he was off that day but to come in anyways. He did some tests and when we returned from the MRI, he had an oncologist, surgeon, anesthesiologist, etc. lined up. …Read More
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
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
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
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
Ronette’s Story
Ewing’s sarcoma at the radius
Age at Diagnosis: 26
Date of Diagnosis: 2007
Location: Indiana
Hospital: Indiana University Medical Center
Team: Dr. Daniel Rushing, Dr. L. Daniel Wurtz
Diagnosis: I first saw an orthopedist in October 2003 after bumping my arm on a door frame. I noticed the next day there was some swelling and a lot of pain. After an x-ray, there was some sort of tumor in my distal radius (right above the wrist on the right arm) and was scheduled for a biopsy. That biopsy came back as necrotic marrow, negative for malignancy. Little did I know that three years later the biopsy was not done correctly and they only scratched the surface.
Well, in the summer of 2007, my arm looked like someone had slid an egg under my skin, and trying to squeeze things became almost impossible. After seeing the doctor I work for, he ordered an x-ray and it looked like someone had taken a bite out of bone. Part of the bone was more than half gone. After gathering my medical records and sending them to an orthopedist in South Bend, it was determined that I needed to see an orthopedic oncologist at IU Med Center. He saw me, told me that he suspected it was cancer, but hoping for a slow one since it had been there for three years. …Read More
