Kristin’s Story

When I was in 6th grade I was doing competitive dance and played soccer. I had bad pain in my left knee so my mother took me to the doctor. She said I was overly active and to take a break for 6 weeks. So I did. When the pain came back again the doctor told me to wear a knee brace while doing sports. That helped a little but not much. The pain would come and go, so I ignored it because so did the doctor. In 8th grade- 1996 I was on the high school track team, still dancing and playing soccer the pain in my knee was bad but I was not willing to give any of those up.

That summer I went to sleep over camp. I feel and hit my knee on a rock- no big deal until I got a bump that wouldn’t go away. I had my physical the week after I got home so I mentioned it to our NEW pediatrician. She felt it and kept her hand on it while talking to us. She sent me for an X-ray that day (a Wed), and that night I went to my friends summer home. The doctor called my mom the next day and said I needed an MRI and it needed to be done Friday. I had it done and we received a phone call around 7pm that night saying there was something on the MRI and whatever it was needed to be checked. Read more

Janine’s Story

Chondrosarcoma at the distal tibia
Age at Diagnosis: 42
Year of Diagnosis: 1995

Diagnosis: During 1993 I bought a small trampoline for use at home. I’d read it was good exercise and was keen to keep fit. I started to use it daily and almost immediately I experienced an excruciating pain in my left leg. It was like a bee sting that lasted ages, so severe that it made me stop in my tracks and gasp. Once the pain had been triggered it didn’t go away – I intermittently felt it. I was no longer able to use the trampoline so packed it away and made an appointment to see my Doctor. He suggested I’d pulled a muscle on the trampoline – even though I knew it wasn’t that kind of pain. The pain continued and became more intense and more regular so that I was walking with a limp and could not walk any distance. It felt like a rat was gnawing the bone of my leg all the time. During this time (over two years) the Doctor kept fobbing me off and not taking my pain seriously. Then one day in complete despair I went to his surgery and refused to leave until he sent me for an x-ray. The x-ray showed a mass inside the bone of my Tibia. I then was sent from one specialist to another each misdiagnosing the mass. I had scans, MRI, more x-rays. Eventually having painfully tramped all over England seeing these specialists I was referred to Mr Steven Cannon (privately) in London. He recognised the mass for what it was immediately and said I needed urgent surgery.I had been feeling depressed about the pain and felt helpless despair but once it was diagnosed and was to be treated the depression lifted. Read more

Lori’s Story

In May of 2000, everything I thought I knew about my life changed.  I had just come home from a trip to New York to visit my grandparents.  It was a very normal day, and while showering I noticed a pain in my right kidney area.  Great, I thought, I’ve got a kidney infection.  I went to my GYN as he was my closest physician and the easiest place to get a urine test done.  There was no infection, as it turned out, but I did have blood in my urine for no reason.  He admitted me to run some tests.

He scanned, x-rayed, scoped…you name it, he did it.  On the very last day, he opted to run a bone scan to see if he could pinpoint the reason for my now phantom (as in gone) pain.  During the bone scan, my tumor was found.  Of course the x-ray tech couldn’t tell me that; she simply told me to get it checked as it wasn’t normal.  As a side note…no cause was ever found for the original kidney pain. 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

Deborah’s Story

Periosteal 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

Charlene’s Story

Osteosarcoma 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

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

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