Marty’s Story

One morning as I was taking a shower I felt a knot on my back. That afternoon, I was told that there was a tumor on my 9th rib.

I never had any pain or discomfort. One morning as I was taking a shower I felt a knot on my back.  I immediately called my family doctor and he suggested I have a CAT scan. That afternoon, I was told that there was a tumor on my 9th rib. At first the doctors here thought it was benign after needle biopsies. Then, during an aborted surgery, the surgeon knew it was something much different, took a larger biopsy, sent it to Mayo, and closed me back up.

Mayo returned the verdict, osteosarcoma, and within two weeks I was on my way to M. D. Anderson Cancer Center in Houston, Texas, where Dr. Wayne L. Hofstetter, a wonderful thoracic surgeon, removed the tumor and two ribs (8th and 9th) on the left side of my body. Dr. Raymond, a pathologist at M. D. Anderson upon receiving Mayo’s diagnosis, questioned if the tumor might not be a periosteal osteosarcoma as a result of the grade. He was correct. Once removed it was determined that it was periosteal osteosarcoma and it had invaded the bone marrow for 7mm. 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

James’ Story

I suffered a pathological fracture to the left distal humerus in April of 2008, with no prior signs or symptoms. Diagnosis was confirmed by the Armed Forces Institute of Pathology as a De-Differentiated Chondrosarcoma. I was 42 years old at the time, with an excellent medical history, both individually and familial, (parents/grandparents all 95 plus) with no history of cancer in the family. I took no medications, and was extremely active riding BMX bikes, and exploring underwater caves around the world. My world changed at that point, and this became my project. Other than the progression of my cancer, I still enjoy excellent health, and take no medications.

In June of 2008, the tumor was resected, my arm salvaged and rebuilt, and I have a good functional result from that. I underwent a humeral implant w/ a total elbow Arthroplasty. The hand works great; the shoulder works great, although I have significant reduced ROM in the elbow joint. Being that no good treatment exists for this very rare cancer, I still underwent 4 rounds of chemo (Ifosfomide/etopicide a Ewings Sarcoma treatment), and 35 treatments of radiation to the tumor bed. Read more

Dick’s Story

Chondrosarcoma at the scapula
Date of Diagnosis: June 2008
Age at Diagnosis: 43
Location: South Carolina
Surgeon: Dr. Bryan Moon

Diagnosis: I hurt my shoulder in the spring of 2006 playing basketball with my daughter. I went to the orthopedic surgeon, as I figured it was either a shoulder separation or rotator cuff problem. The doctor took x-rays, and said he thought it was shoulder instability, or weakened muscles from years of overuse playing baseball and volleyball. He prescribed several weeks of physical therapy that seemed to help for the rest of that year. I mentioned this to my family physician during my annual physical, and said that as long as I could handle the pain, that surgery should be avoided. He knew from personal experience that shoulder surgery was difficult and the rehabilitation was quite painful. Read more

Keith’s Story

Low-grade osteosarcoma at the proximal femur
Age at Diagnosis: 47
Date of Diagnosis: 2003
Location: Colorado
Hospital: Presbyterian St. Luke’s, Denver
Team: Dr. Richard Hesky and Dr. Ross Wilkins

Diagnosis: I went to my GP in late 2002 with chronic pain in my right hip. An x-ray indicated a change in bone density. MRI and subsequent exams pointed to a bone tumor. Biopsy confirmed that it was osteosarcoma.

Treatment: I had a radical femoral resection with hip replacement and no chemotherapy. My experience was positive and uneventful, under the circumstances. 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

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