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
Katy’s Story
Ewing’s sarcoma at the ribs
Age at Diagnosis: 19
Date of Diagnosis: November 2007
Location: North Carolina
Diagnosis: I was having stomach pain and went in for a CT scan to rule out appendicitis. While that was clean, they mentioned that there was a three inch mass that appeared to be in my lung. My doctor tells me that I’m her only sarcoma patient to not have any symptoms. At first, the doctors didn’t know what to make of my tumor. It seemed to be in the space between my lung and ribs on my left side. We went from doctor to doctor until we arrived at the professor of surgery at UNC. He said he didn’t think it was anything bad, but decided to take it out just to be sure. After opening me up, they saw that it wasn’t anything good and took out my eighth, ninth, and tenth rib, and the nerve that runs along there. …Read More
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
Laura’s Story
Ewing’s Sarcoma at the Scapula
Age at Diagnosis: 21
Year of Diagnosis: 1983
Diagnosis: Almost 1 year before diagnosis, I had pain in my left sholder (scapula). Eventually went to an orthopedic specialist who said it was bursitis. Had 2 cortizone shots. Didn’t go away. I was in my first trimester of pregnancy. Doctors continued to say bursitis. Seven weeks from due date, I went to family doctor asking if there was anyting else I could take for pain besides Tylenol. Well, to make a long story short, I had x-rays and biopsy locally. Doctors said it was cancer but didn’t know what kind. They sent me to Mayo Clinic. (Pregnancy complicated things!). On 2/14/83, I was diagnosed with Ewings sarcoma (I was 21 years old). On 2/16/83 my son was born at Rochester Methodist Hospital in Minnesota. He was induced; 4 lbs. 1 oz. Healthy, just needed some fat on him. On 2/17/83, I had scans and bone marrow biopsy. On 2/18/83 I started my first chemo treatment. On 2/21/83, we headed home! This is a short version of a long story! …Read More
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. …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
Rachel’s Story
Age at Diagnosis: 30
Date of Diagnosis: December 2005
Hospital: City of Hope
Team: Dr. Warren Chow and Dr. Vidal Trisal
Diagnosis: I had a lump in my armpit and was in pain. I was trying to get a doctor to do something about it other than say it was a blood clot. After 3 months I was seen by a general surgeon who decided to do exploratory surgery. After he saw the CAT scan from 2 months prior and compared it to the recent one, he knew it was bad! I had the surgery and a few days later found out it was a malignant tumor known as a Ewing’s sarcoma. That type of sarcoma is usually found in the couple decades of life and not usually in the soft tissue. The treatment was started about a month later. I was trying to get medi-cal and get into City of Hope. I was stuck at county hospital and didn’t feel that they knew what they were doing, since all they said was that they never seen anything like that.
Treatment: After the fist surgery, I had had to do chemo before they did another surgery to get the rest if the tumor out. I did 4-5 rounds and that took about 3-4 months. It sucks that I cannot remember the names of the chemo right? That’s a thing known as “chemo brain.” hehheee. I know it vincristin, adriamyacin and some others. I went through the chemo and then it was time for the rest of the tumor to be removed. …Read More
