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.