You may want to look at the profile of member ‘Aime’. She had a similar story to yourself with regards to PV verses Idiopathic erythrocytosis diagnosis. I’m sure she wouldn’t mind you private messaging her, she will be very knowledgeable on this situation.
I would also ask your team if have they ruled out ‘Exon 12’ mutation, 3% of PV patients present with this mutation. My feeling is they probably have as you’re at the well renowned Christie Hospital, but for your own peace of mind you need full clarification.
At the top of this page click on 'Members' under the smaller MPN Voice logo (top left). When the screen refreshes there is a search box for you to look for a specific contributor.
Secondary Polycythemia is not a blood cancer. It is erythrocytosis caused by another condition. While it is possible that the other condition is some form of tumor, that is something your care team would have checked for. What is your primary diagnosis that was identified as the cause of the erythrocytosis?
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I can't believe it I really just can't believe it!!!
GP cancelled my free prescriptions as doesn't classify ET as a blood cancer, and even if it was, I'm not recieving ongoing treatment!? 
Blood Cancer
ET. Cancer or not?
