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.

Jillian’s Story

Chondrosarcoma at the Skull Base
Age at Diagnosis: 42
Year of Diagnosis: 2004
Location: Australia

Diagnosis: I experienced double vision and lack of balance, left arm weakness, memory loss and confusion. If I look back over a period of years I can see problems like a constant noise in the ear (a low pitched noise) and left eye vision problems, but they all seemed to be there. I thought I had a mini-stroke, I was so confused and unable to make decisions.

I waited three days before finally attending the GP, who informed me that I had a middle ear infection and a painless migraine, two days later I returned and was told, it would clear, three days later I re-contacted the GP and was impatiently told ok, CT Scan and Blood work, I received the CT Scan was called to the GP Office that afternoon and involved I had a tumour in my skull base, I would need to see a neurosurgeon and I would have an operation to remove it. Read more

Terry’s Story

Fibrosarcoma at the Nose
Age at Diagnosis: 20

At 20 years old, life was smooth sailing. I was a junior at the University of California at Berkeley, a confident, athletic, successful student. Some even considered me handsome. I was living life on “easy street.”

But that year, several people began to ask if something was wrong with my nose. My right nostril appeared to be flared out. I eventually took notice of a bump pushing against my right nostril, and when it didn’t go away, I made an appointment with a doctor. After telling me it was probably a pimple, when it didn’t disappear three weeks later, he finally suggested a biopsy. Read more

Tammy’s Story

Chondroblastic Osteosarcoma at the Maxilla
Age at Diagnosis: 36
Year of Diagnosis: 1998
Location: Manitoba, Canada

Diagnosis: I had been hit in the face with a baseball and paid a visit to my dentist due to a loose tooth. He told me to keep an eye on it and if it got any looser then I should come back. He thought that I might have to have a root canal if need be. I returned to the dentist in a month as a lump has now erupted on the gum above the tooth. He sent me to a specialist who then took a biopsy. Two days later I was called to come into the office immediately as the results were back. I left work for the appointment and when I arrived I was ushered into the office. The doctor came in and sat beside me…looked at me and said: “This is not good. Did you know you have cancer?” Gee obviously not. He diagnosed me with chondrosarcoma. Read more

Patrick’s Story

Osteosarcoma at the Mandible
Age at Diagnosis: 24
Year of Diagnosis: 2005
Surgeons: Dr. Neal Tohpam and Dr. John Ridge in Philadelphia

Diagnosis: I had dental work in late December 2004. Swelling and aggravation occurred back by my right molars. I went back to school in Orlando, but the swelling got worse. I saw a dentist in Orlando, he put me on antibiotics for a while then sent me to an oral surgeon for a biopsy. I was diagnosed 3 days later (Feb 22, 2005) with an aggressive, life-threatening form of cancer. Osteogenic sarcoma of the jaw. Read more

Trista’s Story

Low-grade Osteosarcoma at the skull (orbit)
Age at Diagnosis: 22
Date of Diagnosis: 2003
Location: Oregon

Diagnosis: During the summer of 2003 I was experiencing blurry vision in my right eye and minimal swelling. I thought that I was having reactions from my hay fever but my parents suggested that I go to the doctor “just in case.” I was scheduled for MRI and CT scans to see what was happening internally. The results were shocking and devastating; I had a small tumor growing near my sinus and right orbit. The tumor had been pushing on my eye which was causing the swelling and blurred sight. After reviewing my scans the surgeon told me that it most likely was not cancerous. I was told that I would get the results 2 weeks post-surgery. It took over a month for them to find out that the tumor was in fact cancerous (Osteoblastic Osteosarcoma) and that I may need additional treatment. Read more

One Woman’s Journey to a Correct Diagnosis

Fall 2006 – With the support of her family and determination to discover the truth, Christi avoided unnecessary surgery and obtained a correct diagnosis…but only after paying doctors out of pocket, sending her tumor samples to three different pathologists, and facing the possible loss of her jaw.

Christi’s Story
A Case of Misdiagnosed Chondrosarcoma at the Maxilla

As you may know, the pathway to getting a correct diagnosis with something as rare as chondrosarcoma can be very difficult. I would like to share an overview of my experience in hopes that it may help someone else on their journey. Read more