Before I was sick I thought cancer was just cancer, unfortunately I had to learn the hard way that there are thousands of different types of cancer out there. I was diagnosed with a Synovial Sarcoma, one of the rarest forms of soft tissue cancer. Sure why would I want any old plain tumour anyways??
Sarcoma is cancerous tumours of the connective tissue, this includes; fat, blood vessels, nerves, bones, muscles, deep skin tissues and cartilage. It is more common in children and young adults, it accounts for 15% of childhood cancer and only 1% of adult cancer. There are two groups of sarcoma, soft tissue sarcoma and sarcoma of the bone. There are over 50 different types of soft tissue sarcoma e.g; Synovial Sarcoma, Angiosarcoma, Ewings Sarcoma, Fibrosarcoma, Clear Cell Sarcoma, Liposarcoma and many more. There is an incredible lack of funding and limited research into sarcoma, meaning that all sarcoma are treated in the same way when in-fact they are all very different! Pharmaceutical companies don't invest much money in researching and developing life saving drugs for sarcoma patients. Sarcoma is aggressive and unpredictable, it has a high rate of recurrence. This means patients need to be diagnosed and treated as soon as possible, but due to its rareness sarcoma is commonly misdiagnosed as harmless cysts or sports injuries. In Ireland, most GP'S will only come across one case of sarcoma in their career. Treatment is often really intense, usually strong chemo and amputation. Each sarcoma patient must be treated individually, what works for one sarcoma patient may not work for another. Although the gold standard for sarcoma is surgery, the tumour needs to be completely gone.
This is why it is vital that patients have access to an oncologist who has great experience in treating sarcomas and who has great contact within the worldwide sarcoma community, in order to discuss each case with different experienced minds. In Ireland about 250 cases of sarcoma are diagnosed a year. Due to this we are currently without a sarcoma specialist. Most countries have sarcoma specialist clinics with many specialists. The sarcoma community in Ireland is quite small and unrecognised. #Sarcomaawareness