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I call MPNs a weird cancer as they’re not like traditional cancers with tumours that spread to other body parts. As AndrewRudge noted, once the immediate threat of blood clots is treated and with on-going treatment if needed, it’s no longer as life-limiting and we can live for many years.
Hello Geraldine. For the majority of us, once we have the diagnosis the immediate threat to life of thrombosis is gone. The medication can reduce our immune system and that can become a problem in later years, for this reason we are encouraged to adopt a good clean diet and indulge in resistance excercise, both support the immune system, and I would heartily encourage everybody to get out and enjoy life and try not to worry.
As you have already heard, ET is not a metastatic cancer that spreads to other parts of the body. It can, however, progress into a more aggressive form of a MPN. The primary risk is progression into Myelofibrosis. From there, a very small number of people with ET can progress into Acute Myeloid Leukemia.
There are also more subtle forms of progression. Over time, the MPN-driver allele burden can increase. This tends to me associated with a heavier symptom burden. Emphasis is on the word "tend" as there is not a linear relationship. ET can also progress into PV, which is what happened to me. I was diagnosed with ET 35 years ago. It progressed to PV about 13 years ago. This type of progression is complicated by how often Masked PV is misdiagnosed at ET. Note that some are misdiagnosed with ET when they actually have Prefibrotic MF as well.
Better understanding progression is essential to moving the science forward. there is an important study underway in the USA by the MPN Research Foundation. We need as many people enrolled as possible to better inform MPN care. https://mpnresearchfoundation.org/mpnprogressio...
My dr told me about myelofibrosis.. I was worried about Leukemia, but he said mylelofibrosis was next, before Leukemia.. I’m just glad to be alive. Praying for us all🙏🏻
Great question, and 14 years with ET is a real testament to your resilience! MPNs behave differently from solid tumor cancers like breast or lung cancer. Instead of forming a tumor that spreads to other organs, MPNs involve blood cells that multiply uncontrollably throughout the bloodstream and bone marrow.
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