Rachel’s Story

Askin’s Tumor at the spine
Age at Diagnosis: 15
Year of Diagnosis: 1998
Location: Midwest

Diagnosis: I was playing high school field hockey (fall 1998) and my back hurt more and more each day. The pediatrician thought it was from my backpack being too heavy. Then basketball season started and it was hurting even more. One morning I woke up and my feet felt strange. I didn’t think too much of it. The next day my legs and chest were numb. We called the orthopedic doctor (since I was so healthy and only broke my arm once). They said it sounded neurological and gave us names of neurologists. Well one could schedule me in a month, another on Monday (it was Friday). My mom was on the phone with my dad trying to decide what to do and the third neurologist broke into the phone line and said he was off that day but to come in anyways. He did some tests and when we returned from the MRI, he had an oncologist, surgeon, anesthesiologist, etc. lined up. Read more

Kelly Marie’s Story

Ewing ’s sarcoma wrapped around the spine
Age at Diagnosis: 29
Date of Diagnosis: January 1996
Location: Southern California
Hospital: City of Hope

Hello, I am a 10 year Cancer Survivor. The medical term for my cancer is Ewing Sarcoma: peripheral primitive neuroectodermal tumor.

My journey begins with a layer of denial. The year of 1995 involved hours with orthopedic doctors. My lower back pained me but they said it was all in my head; stress was the diagnosis. I’d exercise more, take 8 vicoden a day, and be back in the doctor’s office for a shot of cortisone. January 26, 1996 I called my parents. My dad answered, I wished him happy birthday and asked to speak to my mom. Mom got on the phone, I told her I refused to take anymore pain killers. The pain had reached such agony I needed their help to get me to an emergency room. The pain was so great I couldn’t walk on my own.

Mom and dad drove me to a nearby emergency clinic where I was swept right past others to the back. My vital signs were a concern to the intake nurse. What are the odds that the ER doctor that day was the same doctor I’ve been seeing for the last year, the cortisone, and vicodin man. He actually acted upset and asked me what I wanted? Turning to my mom, I asked her to get me back home now, keep me alive for the weekend while I searched for a better reputable doctor. By Monday the insurance company allowed me to be seen by a neurosurgeon, that evening, at 5 pm. Read more

Kyle’s Story

Ewing’s sarcoma at the spine
Age at Diagnosis: 16
Date of Diagnosis: 1986
Hospital: University of Kansas Medical Center
Team: Dr. Sarah Taylor and Dr. Burton

Diagnosis: I first went to the doctor in 1986 complaining of numbness and soreness in my left elbow. They took an x-ray of that arm, and happen to catch the left side of my spinal cord in the film. The doctor was able to see that there was missing and degraded bone centering around my T1-C7 spinal column.

Treatment: I was referred to KUMED for diagnosis and treatment. They did a biopsy which confirmed Ewing’s Sarcoma. For treatment at the time I was on alternating rounds of Cytoxin, Actiniomyacin, Adriomyacin, and Vincristine. I also did Radiation for 9 months concurrent to the chemotherapy. By the time my high school graduation came around in May of 1988 I was free and clear. At least for the next 15 years. Read more

Emily’s Story

Ewing’s sarcoma next to the spine
Age at Diagnosis: 29
Date of Diagnosis: 2006
Hospital: Mayo Clinic

Diagnosis: I was diagnosed with Ewing’s sarcoma at age 29, six months after my marriage to my partner Elizabeth.

I have to know things for myself before I can really hear it from others and this is how it was with cancer too. I was working with various healers on my growing pain for months and there were many times where people in the medical field had a chance to catch my illness but didn’t. I had a significant dream and some intuitions but I didn’t know how to trust them. Finally we noticed that my eyes were dilating differently from each other (nerve damage from the tumor that went unnoticed for months), and I went into action.

I believe that it was hard for other people to see what was happening because I wasn’t ready to show them, let alone show myself. I have directed the shape of this journey the whole way, taking in the information available to me as soon as I was ready and then responding with my best. 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

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

Next Page »