I'm feeling really confused.
I was diagnosed with secondary PV 14+ years ago.
Very long story short; listening to and acting upon amazing support and advice at the MPN Voice conference in Liverpool this September, I contacted Dr T S at The Christie hospital and had an initial appointment with him on 20th Nov. It was a very involved appointment where I finally felt listened to (it has become apparent I've been receiving a very mis-managed treatment plan all these years at my local NHS haematology clinic).
However, I've been left feeling confused .... I've been told, quite assertively, I do not have an MPN (i.e. because the BMB test I had a few years ago was JAK2 negative) and should not regard myself as having one.(an MPN).
'in order to have a diagnosis of myeloproliferative neoplasm one needs a mutation and currently we do not have one' (my follow up letter from clinic)
Which I sort of understand / have always understood I do not have Primary PV. So my question is..... should I no longer be classifying myself as having a "blood cancer"? My GP has just very sternly refused to use the term 'blood cancer' on my recent 'sick note/certificate'; "there's no mention on a diagnosed blood cancer on that letter" (GP comments).
I always thought secondary PV was also classed as a blood cancer. Am I / have I been getting it wrong all this time?