Crystal’s Story
Chondrosarcoma at the radius
Date of Diagnosis: January 2009
Age at diagnosis: 34
Diagnosis & Treatment: I am an LPN working in a nursing home. In December 2008 I started pushing my med cart and noticed sharp pains in my arm. I knew that this was not normal so I went to the ER when I got off work. The ER doctor repeatedly asked me if I had fallen, twisted, or injured my arm. I kept telling him that I had not. He would not x-ray my arm at this time. He told me that is was a sprain and gave me Ultram and a splint to wear for 3 days. Before the 3 days were up my arm had started hurting worse and Ultram was doing absolutely nothing for the pain. …Read More
Janine’s Story
Chondrosarcoma at the distal tibia
Age at Diagnosis: 42
Year of Diagnosis: 1995
Diagnosis: During 1993 I bought a small trampoline for use at home. I’d read it was good exercise and was keen to keep fit. I started to use it daily and almost immediately I experienced an excruciating pain in my left leg. It was like a bee sting that lasted ages, so severe that it made me stop in my tracks and gasp. Once the pain had been triggered it didn’t go away – I intermittently felt it. I was no longer able to use the trampoline so packed it away and made an appointment to see my Doctor. He suggested I’d pulled a muscle on the trampoline – even though I knew it wasn’t that kind of pain. The pain continued and became more intense and more regular so that I was walking with a limp and could not walk any distance. It felt like a rat was gnawing the bone of my leg all the time. During this time (over two years) the Doctor kept fobbing me off and not taking my pain seriously. Then one day in complete despair I went to his surgery and refused to leave until he sent me for an x-ray. The x-ray showed a mass inside the bone of my Tibia. I then was sent from one specialist to another each misdiagnosing the mass. I had scans, MRI, more x-rays. Eventually having painfully tramped all over England seeing these specialists I was referred to Mr Steven Cannon (privately) in London. He recognised the mass for what it was immediately and said I needed urgent surgery.I had been feeling depressed about the pain and felt helpless despair but once it was diagnosed and was to be treated the depression lifted. …Read More
James’ Story
I suffered a pathological fracture to the left distal humerus in April of 2008, with no prior signs or symptoms. Diagnosis was confirmed by the Armed Forces Institute of Pathology as a De-Differentiated Chondrosarcoma. I was 42 years old at the time, with an excellent medical history, both individually and familial, (parents/grandparents all 95 plus) with no history of cancer in the family. I took no medications, and was extremely active riding BMX bikes, and exploring underwater caves around the world. My world changed at that point, and this became my project. Other than the progression of my cancer, I still enjoy excellent health, and take no medications.
In June of 2008, the tumor was resected, my arm salvaged and rebuilt, and I have a good functional result from that. I underwent a humeral implant w/ a total elbow Arthroplasty. The hand works great; the shoulder works great, although I have significant reduced ROM in the elbow joint. Being that no good treatment exists for this very rare cancer, I still underwent 4 rounds of chemo (Ifosfomide/etopicide a Ewings Sarcoma treatment), and 35 treatments of radiation to the tumor bed. …Read More
Dick’s Story
Chondrosarcoma at the scapula
Date of Diagnosis: June 2008
Age at Diagnosis: 43
Location: South Carolina
Surgeon: Dr. Bryan Moon
Diagnosis: I hurt my shoulder in the spring of 2006 playing basketball with my daughter. I went to the orthopedic surgeon, as I figured it was either a shoulder separation or rotator cuff problem. The doctor took x-rays, and said he thought it was shoulder instability, or weakened muscles from years of overuse playing baseball and volleyball. He prescribed several weeks of physical therapy that seemed to help for the rest of that year. I mentioned this to my family physician during my annual physical, and said that as long as I could handle the pain, that surgery should be avoided. He knew from personal experience that shoulder surgery was difficult and the rehabilitation was quite painful. …Read More
Maria’s Story
Chondrosarcoma at the pelvis
Age at Diagnosis: 38
Date of Diagnosis: 2007
Location: Saratoga Springs, New York
Hospital: Dana Farber Cancer Institute/Brigham & Women’s
Surgeon: Dr. John Abraham
Diagnosis: I pulled a groin muscle coming off my horse in the spring of 2007. After two months of physical therapy, it was not getting better. If I did any exercise above and beyond PT, it was difficult and painful to walk. I visited my local orthopedic surgeon and he took and x-ray of my pelvis. You could see a mass on the left superior ramus down the tubercle almost to the sits bone. After an MRI and fill body bone scan, I was referred to an orthopedic oncologist in Schenectady. He initially thought it was fibrous dysplasia, and wanted to do a bone graft and bone biopsy, to make sure it was not cancerous. The biopsy came back chondrosarcoma. …Read More
Jeanna’s Story
Chondrosarcoma at the chest wall
Age at Diagnosis: 32
Date of Diagnosis: 2007
Hospital: University of California Irvine
Team: Dr. Huang and Dr. Abolhoda
Diagnosis: I innocently went to wipe something off my shirt one day when I felt a large lump on my chest. The doctors first suspected it to be in my breast. I went through a battery of imaging tests for about 10 months. My attempted lumpectomy turned exploratory and the tumor was found to be in between the 2nd and 3rd rib behind my right breast. It was diagnosed as a grade 2 chondrosarcoma of the chest wall.
Treatment: In August of 2007 I recieved treatment at the University of California Irvine. I had a wide en-bloc resection of the anterior chest wall with a partial mastectomy. The 2nd, 3rd, and part of the 4th rib were removed along with part of my sternum. Mesh, mortor, muscle flap and skin graft were used to correct the defect. I spent 3 days in ICU and 6 days total hospitalization. The doctors at this hospital were really great and did their very best to minimize the trauma. …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
