It is so sad that some Hemotolists / Oncologists have no respect for their patients . I kept seeing my platelets rise after having regular blood panels and finally I suggested I should be seen by a specialist . The worst Oncologist/Hematologist ever licensed . I had done my homework and after DNA Threading and numerous appts spread out over months , I had to also ask this if this was cancer , how rare it was and what Hydroxurea was . I knew I had to be my own advocate and after my Bone marrow Biopsy( my Oncologist never even called to check on me ) , it was obvious I needed a Dr that was a lot more empathetic and knowledgeable , so I researched my ET and am now seeing a wonderful Oncologist. I know I have to be on Hydyoxurea for the rest of my life ; my platelets are 620 and my new Dr is trying to get them down to 400. Strokes run in my family and This cancer is very very rare ( .01 % of the population has it ) . It is not genetic , but they are still doing research to see if it somehow has been linked to family members .
You have to be YOUR OWN ADVOCATE! . Do not be afraid to question Doctors , and change Dr’s if you don’t feel good about your medical care ! Your life depends on it ! Good luck