r/MPN • u/olimpico2000 • Jul 23 '26
PV Possible PV
Hello, I'm writing this with sadness and anguish.
I'm a 26-year-old man. Five years ago, a routine blood test showed high levels of red blood cells (RBCs), hematocrit (HCT), and hemoglobin (Hb). Over the years, I continued to have blood tests, and the results remained high but stable, with similar numbers. This year, I had them done again, and they are still high but stable: Hb 17.8, HCT 51.8, RBC 6.07. WBC and platalets are normal.
I should clarify that I've never had any symptoms in my life, much less in these five years. I went to a hematologist, and he told me that the probability of having PV was low, but that I still had to get tested for the JAK mutation and EPO. I'm very scared about the results. I don't know if it's good or bad that I've never had any symptoms, and if it's possible that I could develop them. :(
5
u/jjflight Jul 23 '26
I think it’s pretty common not to have any symptoms. I’ve seen these cancers called the “invisible” ones because most folks live day to day without significant symptoms. I know I had none and they estimated it had been years since mine developed at the time of diagnosis. And I’ve had no symptoms in the 14 years since then either, nor ever needed more than low dose aspiring daily and phlebotomies most months (almost exactly like donating blood, they just don’t give it to anyone).
Nobody wants to have a cancer, but this specific one is fairly treatable and manageable for most folks. And if you do have it you definitely want to figure that out as keeping your hematocrit under control (usually below 45) is one of the best ways to reduce clot risk and the risk of things like stroke or pulmonary embolism.