Aaron’s Story
Chondrosarcoma at the proximal femur
Age at Diagnosis: 20
Date of Diagnosis: 1990
Location: Idaho
Diagnosis: I was 19 years old when I was playing soccer. I was running down the field and I heard a snap and then sharp pain coming from my second toe on my right foot. My toe just broke!
I went to a doctor who did an x-ray and said that something was wrong with my bone, it was as thin as an egg shell. He sent me to a specialist who had me go through a bone scan. There they found a sizable tumor in my right proximal femur.
Treatment: I went to surgery in September of 1990 where they removed the bone in my toe and replaced it with a cadaver bone. They curretaged my femur and sent me on to PT. My diagnosis was Encondroma. A benign cartilaginous tumor. …Read More
Victoria’s Story
Chondrosarcoma at the Sternum
Age at Diagnosis: 51
Year of Diagnosis: 2004
Diagnosis: I am a 51 year old nurse who had a growth at the top of my sternum for 2 years. Over that time I asked several doctors who did not know what it was, and said not to worry. At one point, a nurse practitioner ordered a chest x-ray and since nothing showed up on it, she also said not to worry. I have asthma and see a pulmonologist every year so when I came back for the second year and it was still there, he ordered a CT scan. On Dec.14th of 2004 the CT report indicated a 2.7 cm tumor, possible chondrosarcoma and recommended biopsy. He referred me to a surgeon. …Read More
Tom’s Story
Chondrosarcoma at the Proximal Humerus
Age at Diagnosis: 40
Year of Diagnosis: 2000
Diagnosis: I had shoulder pain after exercise that did not get better. After 3-4 months I went to a sports medicine doc. His diagnosis was unclear, so he sent me for an MRI. Monday 9AM, the MRI showed very plainly, a bone tumor in the humerus. An expert in NYC was recommended. Much to my surprise, they took my insurance, and had a cancellation at noon. My MRI drew a crowd of interns. I had a bone scan on Tuesday, which showed only the shoulder as the hot spot. I had a surgical biopsy on Thursday, and was told it was Chondrosarcoma, and we could think before we had to act. Some bone cancers are very aggressive, but I was allowed to go home, and my surgeon was allowed to take his vacation! Regardless of being allowed to wait, my wife and I wanted this removed asap, but also wanted to preserve as much function as possible. The tumor resection was scheduled for a month later. …Read More
Thomas’s Story
Chondrosarcoma at the Distal Femur
Age at Diagnosis: 19
Year of Diagnosis: 1979
Location: New York State
Diagnosis: I had hurt my left knee playing rugby at college. I got an x-ray for that, and was called back to see the orthopedist who rounded at the college. He had seen a shadow on the femur, just above the knee area, which he thought was suspicious. The radiologist did not read it as abnormal. A follow-up bone scan and subsequent CT scan delineated a very active soft-tissue tumor eroding bone.
In January 1980 during break, I had an excisional biopsy under spinal anesthesia. I woke up during this to feel the vibrations from the ortho hammering on a chisel into my femur. As it didn’t hurt, (and likely with the help of some added sedation) I went back to sleep.
The result came back as chondrosarcoma. I looked everywhere for information, but even in university libraries and medical center texts, there was little to be found. I waited from Feb to June for treatment, basically freaking out – problems with mood and ETOH – which in retrospect (and after some cognitive therapy) I can mostly attribute to fear and anxiety. This stemmed more from fear of amputation than fear of death. …Read More
Sharon’s Story
Chondrosarcoma at the Temporal Bone
Age at Diagnosis: 31
Year of Diagnosis: 2002
Location: United Kingdom
Diagnosis: I first saw the doctor in Jun 2001, who kept telling me I had sinus problems. After 4 months of continuous trips to the doctor with a muffled ear and dizziness I was told I had a distorted eardrum. I saw a specialist in Dec 2001 who gave me steroids. In April 2002 I had a CT scan and was diagnosed with a Glomus Jugulare Tumour. I was sent to Liverpool for a operation to find out it was a Chordoma Tumour of the Temporal Bone (prognosis of 5 years maximum). I was 31 at the time. I had Stereotactic radiotherapy for 7.5 weeks and was told by my oncologist that he thought they had misdiagnosed me. In November 2004 I finally was told that I have Chondrosarcoma of the Temporal Bone.
Treatment: I waited from April 2002 until August 2002 for surgery but it took over a year to be diagnosed and for a doctor to believe me. I had a radical mastoidectomy to remove the tumour which was on the temporal bone. When I went into hospital I had no idea it was cancer as they misdiagnosed me. After surgery the doctors kept talking about follow up treatment…thats when I realised it was serious. My 7.5 weeks treatment with sterotactic conventional radiotheraphy were probably the best time I’ve ever spent in hospital. The treatment was awful but the support and friends I made in the hospital more than made up for anything I was going through.
Recovery: After my radiotherapy I was off work for 2 months to recover. Sickness and tiredness were the worst factors. I have permanent loss of hair but was very lucky as I can hide the loss. To date I have had no recurrence. I have yearly scans and 6 monthly check ups by my surgeon but have still not talked to anyone since I got a letter with my new diagnosis of chondrosarcoma, so have no idea what my prognosis is part from it is better than Chordoma. I have constant noise in my ear now but I have been so lucky as I was told I would lose facial nerves and all my hearing in my right ear. None of this has happened so I am one of the lucky ones.
Life Now: I am back to work full time and have taken up running to raise money for cancer patients. I sadly lost my Dad to Stomach cancer whilst I was going through my radiotherapy so cancer is very close to me. I wouldn’t change a thing of what I have been through as it has changed my life for the best. The friends I have made has been unbelievable but also the sadness of hearing they have passed away is the worst.
Thoughts and Hints for New Patients: Try and be positive. Without being positive I think you just give up and admit defeat. There is a life after cancer, yes every twinge etc I think for a split second…is it back? But you can get through it. I found it harder to cope with my dear Dad suffering than going through it myself…that was a lesson learnt by me, it can be hard for those round about you.
Scott’s Story
Chondrosarcoma at the Clavicle
Age at Diagnosis: 39
Year of Diagnosis: 2004
Location: New York State
Diagnosis: In July of 2004 I noticed a knot on the side of my neck just above the collarbone. I thought nothing of it and finally got around to seeing my doctor at the end of August. She diagnosed it as a cyst and refered me to a plastic surgeon to have it removed. The surgeon was not at all convinced that it was a cyst and ordered a chest x-ray, MRI, and needle biopsy of the mass. All results came back negative for cancer and surgery was scheduled for Oct 20, 2004. The surgery was a success and the surgeon removed as much of the mass as possible and sent it off to the lab for a final biopsy. He told me that it extended below the collarbone near the lung and jugular vein, therefore he did not want to touch it unless it was malignant, in otherwords if it was nothing let sleeping dogs lie. …Read More
Sara’s Story
Chondrosarcoma at the distal femur
Age at diagnosis: 28
Date of Diagnosis: May 2005
Location: Colorado
Surgeon: Dr. John Healey
Hospital: Memorial Sloan Kettering Cancer Center in New York City
Diagnosis: In April 2005 I was just finishing up an 8th month yoga teacher training program when I finally decided to see a doctor about a lump on my outer left thigh, a few inches above my knee. It had started to interfere with my yoga practice, and caused pain along my ITB. I went to an orthopedic doctor who took a few x-rays, saw the lesion on my bone and told me that it was a TUMOR; I couldn’t believe it. He went on to say it probably wasn’t anything serious, but that I needed to see a specialist in orthopedic oncology. I remember walking out onto busy Madison Avenue; it was a windy day and my x-rays blew out of my hand, out of their envelope and onto the street. I was so startled by the news and as I chased down my x-rays, I knew something in my life has seriously shifted. …Read More
