Jeanne’s Story

Ewing’s sarcoma at the distal femur
Age at Diagnosis: 45
Date of Diagnosis: February 2005
Location: Nebraska
Surgeon: Howard Rosenthal at Nebraska Medical Center

Diagnosis: I woke up one morning in July of 2004 with terrible pain in my right knee. I was concerned but, because I had badly sprained the same knee some years ago, my first thought was that I had re-injured it somehow. Like a good girl, I made a doctor’s appointment for that day. Surprisingly, just as we reached the doctor’s office, the pain disappeared. I felt really embarrassed, but went ahead with the exam and the x-rays. Everything seemed to be normal. This was the beginning of an eight month cycle of excruciating pain followed by increasingly shorter periods of normalcy. I went to the doctor several times during this period, each time receiving a different diagnosis….knee sprain, torn meniscus, sciatica….until I finally demanded an orthopedic consult. Initially even the orthopedist thought I had some minor joint problem, but then the MRI results came back and I had a rather large mass on the distal femur. Within 48 hours I was at the orthopedic oncology clinic of the Nebraska Medical Center having every test imaginable: CT, bone scan, x-rays, blood work, needle biopsy. At first we thought I would have to have an open biopsy because the results from the needle biopsy were inconclusive. However, the sample was sent out to another pathology lab which ran some sort of DNA/RNA test which was conclusive for Ewing’s. Things moved very quickly from there. I had a bone marrow biopsy, a port inserted, and my first meeting with the medical oncologist. Read more

Mary Ann’s Story

Chondrosarcoma at the cervical spine
Age at Diagnosis: 42
Date of Diagnosis: 1999
Location: Michigan
Hospital: St. Luke’s Roosevelt
Team: Dr. Chandranath Sen

Diagnosis: I first saw a doctor for pain in my neck. An MRI revealed a tumor. I only waited two weeks for treatment. It was a time of very high anxiety. I did a lot of reading about having cancer and dealing with a new diagnosis of cancer. I also spoke with cancer survivors to learn from them.

Treatment: My surgeon was not able to remove the tumor in one piece with margins so I went for proton radiation. My tumor came back after 5 years. At that time I sought treatment from someone who had experience with chondrosarcoma. I did not know the diagnosis at the time of my first surgery. I had more surgery (2 years ago). That surgery has left me with some ongoing problems but so far the tumor has not come back. Read more

Omar’s Story

Sarcoma at the pelvis
Age at Diagnosis: 44
Date of Diagnosis: November 2004
Location: Toronto, Canada
Hospital: Mount Sanai Hospital
Team: Dr. Blackstein and Dr. Wunder

Diagnosis: I was first diagnosed in November of 2004. It was Sunday morning and I went for a10k run as I do every three days of the week. After the 6k, I felt a sharp pain in my pelvis. They did an x-ray on my pelvis and then asked me to go and see specialist. One week later I was asked to have an MRI of my pelvis.

Three weeks later, I was told I have cancer. At first I could not believe what I heard. Then I knew I had to deal with the reality at hand. Read more

Art’s Story

Osteosarcoma at the distal femur
Age at Diagnosis: 44
Date of Diagnosis: 2006
Location: New Jersey
Hospital: NY Presbyterian-Columbia University

Diagnosis: I was experiencing knee pain after playing ice hockey. Being 44 yrs old at the time and still skating I thought I had an injury so I went to an orthopedist. He gave me naproxen for inflammation. He told me I had a vascular necrosis. He wanted to know if I took steroids. I took large doses of prednisone in the early 80’s for treatment of Hairy Cell Leukemia. The pain was getting worse and after another x-ray he saw something and sent me to an orthopedic oncologist that deals with tumors. Now I was scared because I already had cancer once and couldn’t believe what was happening. They sent me for a bone scan and the fun began. Quickly I had a lung-abdomen CT scan and the next day a biopsy. Read more

Karen’s Story

Parosteal Osteosarcoma at the Proximal Tibia
With lung mets
Age at Diagnosis: 45
Year of Diagnosis: 2004
Location: Georgia
Surgeon: Dr. David Monson in Atlanta

Diagnosis: In December of 2003, at the age of 44, I went to the doctor to have my cholesterol checked. In an attempt to get my money’s worth for the office visit, I casually mentioned to the doctor that I had a pain in my leg on and off over the prior two years. He sent me for an x-ray that afternoon and that was the beginning of my osteosarcoma adventure! Read more

Ted’s Story

Ewing’s sarcoma at the spine with multiple mets
Age at diagnosis: 42
Date of Diagnosis: June 2004
Location: Florida
Oncologists: Dr. Mayda Arias, Dr. Abdon Medina, Dr. Larry Einhorn
Hospital: Holy Cross Hospital

Diagnosis: My PNET (a form of Ewing’s Sarcoma) was first diagnosed in June, 2004. It arose from morphed teratoma cells from my previous diagnosis of testicular cancer, which I had been diagnosed with in November 1998. While I had been treated for the testicular cancer, having had an orchiectomy in December 1998, follow-up chemo in June 1999, surgery to remove my first teratoma in my neck in November 1999, and three subsequent resections for new teratomas in my chest (9/2001), neck (same spot – 11/2002), and abdomen (6/2003), in late 2003 and early 2004, I started to have some back pain, which I was unable to relieve. I have had a history of back problems, so this didn’t seem to be anything different. Unfortunately, on June 16, 2004, I started to lose some of the feeling in my legs and was admitted to the hospital, where an MRI revealed multiple lesions in my spine, including one pressing against my spinal column. A biopsy revealed a new germ-cell tumor and my original oncologist misdiagnosed it as more of the same testicular cancer. At this point, I contacted Dr. Larry Einhorn at Indiana University, who diagnosed my condition right over the phone (which was totally amazing). A follow up appointment with him in Indianapolis less than a week later confirmed that I did indeed have PNET and apparently this could arise from mutant teratoma cells from testicular cancer. 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

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