David’s Mum contacted me late in 2008 to ask for help. David was 23 years old and was suffering from a rare form of cancer, Sarcoma. He had been refused a new treatment that his oncologist had recommended.
Sarcomas are cancers of connective tissue – bone, muscle, nerves, fatty tissue, cartilage etc. They are rare, accounting for about 1% of all cancer diagnoses, or around 3200 cases altogether in the UK each year.
The causes of most sarcomas are unknown. There are some hereditary syndromes which have a pre-disposition to sarcoma but the number of cases is very small. The National Health Service has no clinical guidelines for treatment of sarcoma although accepted standard practice is based on evidence from research studies and clinical trials. The rarity of the disease means that very few hospitals have the specialist skills and knowledge to treat patients and the doctors themselves keep in touch with developments in research, sharing their own experience, so that the best understanding of how to treat patients is used everywhere.
A new drug, Trabectedin had just been licensed but was yet to be approved by NICE and David was one of many Sarcoma patients that contacted me for help in accessing the treatment.
I am delighted to say the appeal was successful and 18 months later David helped me with a speech to the Annual Conference of the Teenage Cancer Trust. He has continued to do well and it was a pleasure to be able to assist him.