kimbo50 wrote:hi all. I had a primary bladder paraganglioma removed in april 2010. This was after months of ill health and doctors not knowing what the problem was. They found it accidentaly and i feared the worst. After mibg scans and a follow up check up i have been told it has not spread thank goodness. I have read mountains of medical info and discovered that because its so rare they dont know how it will behave. I am asking about genetic testing and will continue to have regular check ups but its so hard and terrifying to live with sometimes. Not knowing is the worst part so i understand your pain and your loss. Have you any advice to give me about what sort of questions i should be asking. Any views would be appreciated.
Users browsing this forum: No registered users and 1 guest