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

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

Cari’s Story

Osteosarcoma 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

Kaye’s Story

Ewing’s sarcoma at the tibia
Age at Diagnosis: 32
Date of Diagnosis: December 2005
Location: San Antonio, Texas
Team: Drs. Drengler and Williams at the Cancer Therapy Research Center

Diagnosis: The first question everyone asks when I tell them that this is primarily a kids cancer is “How did you find out you have it?” I literally woke up one morning and fell out of bed. I went to bed, and the next morning tried to stand up, and fell. I went to my primary doc, and he told me that I sprained my calf. I refused to take that for an answer, and requested a sonogram for a blood clot. You know there is a major problem when the radiation tech gasps and then says hold on. That was October 28, 2005. After many sonograms, CT’s, MRI’s, and being sent to the wrong doctors, I finally received my biopsy in November (right after I turned 32). Two weeks after my biopsy, I had to call the doc to check up. He explained to me that it took so long for the results because they had to send them to a pediatric hospital for confirmation. I was at work when he told me, and I think I fainted. Not too sure. That was December 1 2005. Ewing’s sarcoma/PNET completely localized, no mets, about the size of a large egg in my calf. Read more

Kelly’s Story

Osteosarcoma at the tibia
Age at Diagnosis: 38
Date of Diagnosis: 2006
Location: USA
Hospital: University of Michigan
Team: Dr. Sybil Biermann, Dr. Scott Schuetze

Diagnosis: During October of 2006 my mother was dying of lung cancer. While caring for her, my knee started to ache. It wasn’t too painful, however I found myself taking Motrin to help with the pain. I attributed the pain to my trying to move my mother into different positions to make her more comfortable. I thought that maybe I had twisted my knee. There was no swelling, just a dull ache. Heat and cold did not seem to help. My mother died on October 18th and after her death the pain became worse. Read more

Andrew’s Story

Osteosarcoma at the tibia
Age at Diagnosis: 19
Date of Diagnosis: 1984
Location: United Kingdom
Hospital: Middlesex-London
Team: Dr Jelliffe, Mr Sweetnam and later, Prof Cobb

Diagnosis: I was born in Zambia in 1965 and am the youngest of three boys. My brothers are quite a lot older than me and used to give me grief when I was little. This changed over the years and they became extra fathers for me, guiding me, or trying to, through my teenage years. My parents sent me off to school when I was six years old; it must’ve been as hard for them as it was for me. Anyway, I continued to go away to school for the rest of my education. I was a normal teenager like any other; stroppy, sometimes rude to one’s elders and betters, but otherwise pretty normal. I played sport for the school, enjoyed the outdoors and probably didn’t do enough studying.

During 1984, my life was going in a steady direction towards a hopeful career in the RAF when everything suddenly fell apart. I started to get discomfort in my right knee. Read more

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

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