William’s Story

Ewing’s sarcoma at the spine
Age at Diagnosis: 26
Date of Diagnosis: 2007
Location: Missouri
Hospital: Boone Hospital Center
Team: Dr. Ramadoss and Dr. Ryan

Diagnosis: I started having back pain in June of 2007. I am a warehouse worker, and just assumed that I had pulled a muscle. I called my doctor and he prescribed a muscle relaxer and did an x-ray, which was negative. The pain was intense enough to send me to the ER in early June, and the doctors did a scan because it looked to them like a kidney stone. The scan was negative, so they sent me home with a prescription for Vicodin and told me to rest. I spent the whole month of June with pretty severe back pain, and started taking more and more of the Vicodin.

I went back to the ER in mid-July, and they scanned again for a kidney stone. The scan was again negative, but they saw some spots in my lungs that weren’t there on the first scan in June. The doctors assured me that since I live in Missouri, it was normal to have scar tissue in my lungs, and that I shouldn’t worry about it. They said to continue the Vicodin (which I told them wasn’t working), and I went home. The next few days were agony- I started having a numbness in my left flank and into my left groin, and I didn’t sleep at all because it hurt so bad. Two days after I went to the ER, my legs started jumping in bed on their own. My wife called the doctor immediately and they ordered an MRI of my spine in the afternoon.

After the scan, the MRI tech came out and said that they had seen something on the scan and I needed to see my doctor first thing in the morning. When I saw my doctor the next day, he told me that they had found a tumor on my spine at the T12-L1 level and he assured me that these things are usually benign. He wanted to set me up to see a neurosurgeon later that week. My wife insisted that I be hospitalized because of the pain I was in. The neurosurgeon saw us immediately at the hospital and took me to surgery later that day to remove the tumor.

Treatment: I had surgery on my spine to remove the tumor. It had grown from the bone and into the muscles of my back, causing the flank pain that had caused the doctors to think I had a kidney stone. The tumor was also wrapped around some nerve roots, so they couldn’t remove the whole thing because it would’ve paralyzed my leg. I started chemotherapy a week after the surgery, because the tumor started growing again immediately after the surgery. I am taking 5 days/week of Ifosfamide and Etoposide, alternating every three weeks with adriamycin/cytoxan/ vincristine. There is a break after the 8th cycle for radiation treatments to the tumor area, then I go back to the chemo cycles for 9 more rounds. Because the cancer had metastasized to my lungs, I will receive 1 week of radiation to my lungs after the chemotherapy is finished. The oncologists are great – they are on top of things and keep me feeling as good as possible.

Recovery and Life Now: I am currently undergoing treatment still. While it is hard, I have a loving family that is really helping me right now. My back still hurts occasionally, though nothing like before surgery. I continue to have numbness in my leg and groin that is permanent. The chemotherapy really decreases my WBCs and hemoglobin, and I have to be very careful not to get an infection.

Thoughts and Hints for Patients: If you think something is wrong with you, take action!! Your own instinct is worth more than a thousand tests. Make sure you really communicate well with your doctor. Get second opinions, because our treatment plan changed after consultations with other physicians. What is getting me through this is my positive attitude- it really helps me to take things one day at a time and keep a positive outlook no matter how badly I’m feeling.