Wendy, physicians consider a number of factors when diagnosing PV because most diagnostic tests are not singularly determinative. In my case, once they saw the negative JAK2, they settled on the non-cancerous secondary polycythemia diagnosis because I am on long-term testosterone and that is a known cause of polycythemia. Now, if my numbers eventually spin out of control, they will reconsider my diagnosis, redo the JAK2, and order a biopsy. This all makes sense. However, a patient with my same signs/symptoms and bloodwork but without any conditions suggesting secondary polycythemia might well be diagnosed with PV (primary and cancerous) even with a negative JAK2 because there are PV cases with a negative JAK2, at least initially, and because there is no other explanation for the patient’s signs and symptoms. Perhaps consider asking your hematologist exactly how he is balancing out all the factors in determining your diagnosis. It may be helpful to hear his reasoning.

Also consider that generally, at diagnosis, the treatments for both P and PV are the same: blood thinners and phlebotomy. The treatments generally do not diverge for quite some time. Hence, they can immediately treat the patient and eventually reevaluate the diagnosis in the future if need be.

I am also now feeling drained as a result of monthly phlebotomy sessions. But the phlebotomy has certainly helped so I am not complaining.

Consider asking your hematologist to place a standing CBC order on your chart. My Kaiser physician did and so I can go in for a CBC once per month as necessary just to see what is happening. And if my numbers go up over a predetermined level, I also have a standing order for phlebotomy. This means I needn’t be constantly contacting her for tests and such.