I was recently diagnosed with primary myelofibrosis after a positive Jak 2 test at GP surgery led to referral to haematology and bone marrow biopsy. I’ve just started hydroxycarbamide and the specialist will monitor my blood to check if it is helping. What worries me is that my GP tested for Jak 2 mutation 3years ago and it came back positive but they didnt follow it up and never told me the result or significance of it. I feel like for the last 3 years I have had this disease and it has been causing scarring in my bone marrow all this time. I know I shouldn’t Google things but when I did Google myelofibrosis it said median life span of 6 years. So I feel scared that I am already at least 3 years into that time span which I could have been having treatment if I had been referred so am I more likely to have a worse prognosis because I have only just started treatment. Sorry to sound so negative but can’t help thinking what if I had been referred 3 years ago would it have made any difference to how my disease progresses. I have a wife and three children and worry so much about them if this disease takes me early
