Brian’s Story

Ewing’s sarcoma at the pelvis
Age at Diagnosis: 17
Date of Diagnosis: 1980
Location: New York
Hospital: Memorial Sloan-Kettering

Diagnosis: Well, I was working at Baskin-Robbins, me and all the cheerleaders from Colonie Central H.S. I was up on top of the freezer, I jumped-up and banged my hip on the corner of the table. A few days later I had a lump on my hip. I went to the doctor (Dr. Richard MacDowell) and he said I had a blood clot. So when he went in to drain it, he saw something and ended-up doing a biopsy. Later he disclosed to us that he found a tumor. I didn’t know what that meant but my family did. At 17 years-old I really didn’t get it. To me it was, ‘if it’s broke, just fix it’.

Treatment: So, I started getting some radiation. As it turned-out it was like 2 1/2 times the amount I was supposed to receive. (My sister always said it was my saving grace.) I was very radioactive for quite some time. So, after that I got a lot of chemotherapy. And then I got some ‘experimental’ chemo because nothing else was working. After about a year and a half of treatments my mom noticed that all this stuff was just killing me, literally. Then she did her research and found Dr. Lane in New York City as my answer. It was my last resort to try and remove a portion of this bone and see if I could see tomorrow. It was a tough treatment schedule as I lost a lot of weight, lost all my hair, lost a lot of myself. It was a tough place but, as I always thought, the show must go on. Read more

Christina’s Story

Chondrosarcoma at the pelvis
Age at Diagnosis: 26
Date of Diagnosis: November 2005
Hospital: Methodist Hospital in Houston
Team: Dr. Rex Marco

Diagnosis: All my life, I’ve been a very active person. So when I started to have pain in my pelvic area, I thought I just overworked myself in the gym or working out. I had decided to go to the gynecologist to discuss getting birth control, since I didn’t want to have any more kids and was happy with the two I had. And I hadn’t gone in a few years. So when it was time to do a pap smear, they told me that they could not put in the forceps. I thought maybe I was just nervous. Then the ultrasound machine came out and they found a large mass in my pelvic area. I thought, “Am I pregnant?” No. This was no baby, but a tumor the size of a soccer ball. I still didn’t make a big deal out of it, and acted as I usually did. I thought “Hey, I’m as healthy as can be!” Well, ironically, on my birthday a couple days later I received an alarming phone call from the doctor informing me that he was pretty sure I had something called chondrosarcoma and I needed to go straight to the hospital for emergency cat-scans. I never knew what lay ahead of me from that day forward. After several cat-scans and MRI’s, they told me that I had a cancerous tumor and needed to amputate my right leg and soon. I was shocked. But I decided to get a second opinion and drove across country to where my family lived and found another surgeon who said he would try to save my leg, and my life. Read more

Cathy’s Story

Chondrosarcoma at the pelvis
Age at Diagnosis: 39
Date of Diagnosis: 1997
Hospital: Christchurch Hospital in New Zealand
Surgeon: James Burn

Diagnosis: For many years I had experienced increasing pain in my left hip. I did nothing about it until I started noticing that I was collapsing into my hip when I was standing -very strange. A chiropractor told me it was my back but still nothing improved with treatment. The crunch came one day when I was in a job interview and suddenly couldn’t stand up and was experiencing excruciating pain. Needless to say an x-ray brought a very urgent appointment with an orthopedic surgeon. After the usual plethora of tests I was diagn0sed with a large chondrosarcoma in my left pelvis extending into the acetabulum. After gaining several opinions including international, my surgeon told me that he would have to amputate my left leg. The surgery was duly booked for a few weeks time.

Treatment: A week before the surgery I saw an article about a woman who had had the same tumour as me. Her surgeon had removed it and replaced the part of the pelvis with a prosthesis. Amazingly this had happened a year previously but was only now in the news. I contacted this surgeon who agreed to take me on and a few months later in my 39th year I had the surgery. The prosthesis was an amazing replica of my left side of the pelvis and a new hip replacement was fitted into it. Read more

Roger’s Story

Ewing’s sarcoma at the pelvis
Age at Diagnosis: 11
Date of Diagnosis: 1971
Location: Illinois, United States

Diagnosis: On Labor Day of 1971, at the age of 11, I fell while playing football with friends. I had severe pain and went to the local ER. I was seen by my local MD who referred me to a specialist in Peoria, IL. That specialist had me admitted to a Peoria hospital and had another specialist take a look. They suspected Ewing’s Sarcoma, so they did a biopsy and sent the sample to the National Institutes of Health in Bethesda, MD. NIH confirmed it was Ewing’s and that they were doing a study. They requested that my mother and I come to NIH for further tests at the end of September 1971.

Treatment: After two weeks of additional tests at NIH, I started with localized radiation treatments to my right hip. For a short time I received radiation treatments to the head. At my 5th week at NIH I receive my first chemotherapy. The first chemo was Vincristine.

After 6 weeks at NIH, my mother and I were told we could go home, but to return in 3 weeks and I would receive a new drug called Adriamycin. From what I was told at the time, I would be one of the first non-terminal patients treated with Adriamycin. My mother and I returned to NIH every three weeks for chemo, alternating between Vincristine and Adriamycin. Read more

Jennifer’s Story

Osteosarcoma at the Pelvis
Age at Diagnosis: 23
Date of Diagnosis: August 1999

Diagnosis: I was misdiagnosed for about 6 months. Even though I had x-rays done, my doctor did not see the tumor right in front of her. I was told to have physical therapy because my doctor thought I had a torn ligament in my left hip. Eventually, when the physical therapy wasn’t working and the pain was getting worse, I was sent to see a surgeon to repair the torn ligaments. The surgeon noticed the tumor immediately from the original x-ray. It was the scariest thing I’ve ever gone through; I was 24 years old. I immediately went to see a surgeon and oncologist, and I had a biopsy, which was very painful with just local anesthetic. Read more

T.J.’s Story

Ewing’s Sarcoma at the Pelvis
With lung mets
Age at Diagnosis: 17
Date of Diagnosis: June 12, 2004
Location: Oklahoma

Diagnosis: I was a high school student athlete who had been receiving steroid shots, for two years, by my PCP for a supposed pinched nerve in my back. Finally enough was enough, and I asked for a MRI on my right hip. As soon as it came back they knew it wasn’t a pinched nerve. The tumor was the size of the ball of my favorite sport, Baseball. When I realized it was cancer, it felt like a warm blanket had been wrapped around all of my insides and I wasn’t scared at all of dying or anything. My family and friends took it a lot harder than I did. I just wanted to keep a smile on their faces to let them know that everything was going to be fine. Read more

Mike’s Story

Chondroblastic Osteosarcoma at the Pelvis
Age at Diagnosis: 17
Year of Diagnosis: 1986
Location: North Carolina, USA

Diagnosis: I was 17 years old and noticed a pain on the left side of my groin. It started out very minor, like a bruise, but then progressed rapidly. Within four months, the pain was so excruciating that I had my sister drop me off at the local emergency room. The doctor ordered some x-rays, and I watched as he read them. He then called over some other doctors, and they in turn called some doctors from somewhere else, and all of a sudden, there were about 10-12 physicians looking at my x-rays and looking and pointing at me. Then after what seemed like an eternity, 2 doctors in suits came to me and just announced, point blank, that I had a football sized tumor in my pelvic bone and that I would most certainly need to have my leg amputated. I had three days to decide if I wanted to go to New York or Florida to start chemotherapy. Needless to say, I felt like I had been hit by a truck. I couldn’t breathe, or hardly talk when I called my sister to come and get me. Read more

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