Hello there @Melmc, it sounds like you’ve been diagnosed with Essential thrombocythemia (ET) and have concerns. These concerns are understandable! I was diagnosed with another Myeloproliferative neoplasms (MPN) last year, Polycythaemia vera (PV), which is closely related to Essential thrombocythemia (ET), and am considered a young survivor so I can empathise with some of what you’ve shared.
I see from your earlier posts that you’ve had concerns about your blood cell numbers for years, so I applaud you for persevering with seeking answers. Well done getting referred to haematologists to make sure. Looking back over my own CBC test results from before my diagnosis I see that my platelets varied each time, going up and down. Now they’re usually in the normal range.
I hadn’t heard of Myeloproliferative neoplasms (MPN) Connect and it looks like it’s owned by an American pharmaceutical company called Incyte. I’d be wary of reading information about such a delicate subject sponsored by a company that makes medicines for these sorts of blood cancers. You might find more accurate, less biased information about ET and MPNs here on Blood Cancer UK.
While research about MPNs such as ours often states that we have a prognosis of surviving 20 years, this is usually based on folks who are diagnosed later in life, usually 60+ in age. I attended a blood cancer conference earlier this year where a global Myeloproliferative neoplasms (MPN) specialist explained how these prognoses are based on older patients surviving with MPNs into normal old age. Most folks are diagnosed with MPNs in their 60s and so living for another 20 years means they have a nice long normal length of life. You may find some of my notes from the conference interesting in this thread.
Recently I changed haematologist and my new one happened to train with the conference specialist! My new haematologist confirmed that I am more likely to die with Polycythaemia vera (PV) than from it as treatments are so successful these days. I found this very reassuring, although of course I’d rather not have to live with a chronic and rare form of blood cancer at all. I’m sure you can empathise!
Do keep posting, @Melmc! I’m glad you found the forum.