Rare Cancer Support Forum

On Sept 22nd, 2011 I received conformation, following a biopsy, that I have Agressive Fibromatosis. It took me a while to digest the news that while my tumour is benign, it is not benign in it's activities. That is it does not spread like a sarcoma, but it does grow damaging soft tissue in it's wake (like a sarcoma). My tumour, I have named Daisy, is growing at will in the right pectoral muscle. Every day Daisy reminds me she is there, sometimes she goes hours without making her presence felt, then in case i forget, she send a painful jolt like a sharp pinch, electric jolt or at her worse like a stab with a hot needle. I also have nerve pain. I am due an MR this month to see how much Daisy has grown, then I meet with my medical team to determine a treatment plan.

As this disease is rare, finding shared experiences is a challenge, and when you factor in that I am in the UK, the search is harder. So I am reaching out to anyone, particulaly in the UK to share experiences and provide much needed moral support.