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

Jacquelyn’s Story

Ewing’s sarcoma at the clavicle
Age at Diagnosis: 40
Date of Diagnosis: 2005
Location: Australia

Diagnosis: I first attended a doctor for a pain in the shoulder which I thought was just the result of over exertion. The doctor ordered an x-ray and a tumor was found. A biopsy was performed and for the type of tumor it was I was given an injection of cortisone to settle it down. A week later I returned to the doctor with more pain, and a loss of sensation in my right arm and fingers. This time a scan was performed and, believe it or not, behind the first tumor was a second one which was biopsied and found to be Ewing’s Sarcoma.

Treatment: It was felt for some unknown reason not to do surgery (which I found out was the first of many errors by my doctor’s as I have since been told by Doctor’s in the US that monkey’s only really need a clavicle, humans can survive very well without them) just straight in with chemo and radiation neither of which fully managed to control the progression of the disease. I have found since speaking with several Specialists overseas by phone and email, with them having access to my medical records, that basically my entire treatment was wrong from go to woe.

So for me now it is a flight to New York on the 2nd August for 9 days to confer with a board of Doctor’s at Sloan Kettering. Read more

Scott’s Story

Chondrosarcoma at the Clavicle
Age at Diagnosis: 39
Year of Diagnosis: 2004
Location: New York State

Diagnosis: In July of 2004 I noticed a knot on the side of my neck just above the collarbone. I thought nothing of it and finally got around to seeing my doctor at the end of August. She diagnosed it as a cyst and refered me to a plastic surgeon to have it removed. The surgeon was not at all convinced that it was a cyst and ordered a chest x-ray, MRI, and needle biopsy of the mass. All results came back negative for cancer and surgery was scheduled for Oct 20, 2004. The surgery was a success and the surgeon removed as much of the mass as possible and sent it off to the lab for a final biopsy. He told me that it extended below the collarbone near the lung and jugular vein, therefore he did not want to touch it unless it was malignant, in otherwords if it was nothing let sleeping dogs lie. Read more