Elodie's Story
Birthday: September 23, 1972
Location: New Jersey, Texas, USA
Diagnosis Date: 2003
Type of Sarcoma: Synovial Cell Sarcoma
Tumor Site: Behind Knee
Age at time of Diagnosis: 31 years
Hospital:
Newark University Hospital (Biopsy), St. Vincent Comprehensive Cancer Center (Chemo),
St. Barnabas (amputation), Mount Sinai (lung surgery)
Oncologist:
Dr. Gerald Rosen
Surgeon:
Dr. Francis Patterson (biopsy), Dr. Steven Robbins (ampution), Dr. Scott Swanson (lung surgery)
Diagnosis Experience:
I noticed one day that I couldn't bend my left knee fully. I assumed at the time that since I
had hurt that same knee playing volleyball one month earlier, the problem was the injury. I
dismissed the problem for about one and a half year. The problem got worse during my pregnancy
but I assumed it was because of the pregnancy. After my son was born, the problem was worsening.
I couldn't sleep at night due to bad blood circulation in my leg. That's when I decided to see a
doctor. My primary physician first thought I had a benign lump. He sent me to an orthopedic
surgeon anyway. The orthopedic surgeon ordered an x-ray then an MRI. The MRI came back
inconclusive but the radiologist advised a biopsy. My orthopedic surgeon sent me to a sarcoma
specialist for the biopsy. The needle biopsy came back inconclusive. The open biopsy showed
spindle cells. Some tissue was sent to Memorial Kettering Center for genetic analysis. They
found the SYT-SSX1 translocation. In my case, I am more to blame for the late diagnosis than
are my doctors. Until the end, I really never thought I had cancer.
Treatment:
In 2003, my treatment included 4 cycles of chemo (high dose ifosfamide, doxorubicin + cisplatin)
then amputation then 2 more cycles of chemo. End of 2007, my cancer went to my lungs. So far,
I had 2 cycles of high dose ifosfamide, 4 weeks of radiation and one lung surgery (three tumors
were removed from the right lung). I am expecting a left lung surgery in the coming months..
Recovery:
Recovering from the amputation was painful. Physical therapy helps with the pain probably because
it helps improve blood circulation. Going through chemo is like being on a roller coaster. Radiation
was the easiest treatment so far. MY first lung surgery was an easy one since the surgeon could use
VATS and the holes he made were small. I came out of the hospital the day following the surgery... I
am slowly recovering.
Life Now:
After my first treatment, I went back to work. I didn't feel my artificial leg made my work more
difficult. Everything went back to normal except the way people considered me. It was good for the
most. But I did feel my company would never give me more responsibilities than I already had.
Thoughts:
Take one day at a time!
You may want to visit my blog:
http://sarcomesynovial.blogspot.com/
or my website:
http://synovialsarcoma.googlepages.com/
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