After a long wait of many years I was finally diagnosed with Polycythaemia vera ('PV') in October 2025.
My consultant tells me I’m fairly young (I’m 49) to have Polycythaemia vera ('PV') (but I know there are people a lot younger than I am). So far I’m just on daily aspirin and being monitored by blood tests every few months which is fine. The time may come for more treatment, but for now it’s watch and wait.
I guess I just don’t really know what I feel about it to be honest. I waited a long time to find out what was happening and now I know it’s just really a validation of sorts, but also a bit of a shock to finally know. The main thing for me is that I don’t really have much support so reading the posts on here and joining in I hope will give me a place to understand what’s going on and meet people who share the same feelings etc. Thanks for reading.
Hello there @nict, welcome back to the forum after so long. It’s really special that you’ve returned to share this news and I just wanted to say I’m sorry you’ve been diagnosed with Polycythaemia vera ('PV').
It sounds like you’re not too surprised, I’ll have a read of your old posts. Maybe like me you got a test result a while back that maybe indicated something like Polycythaemia vera ('PV')? In my case I was tested for the JAK2 gene mutation which often indicate a blood disorder and then lo and behold there was Polycythaemia vera ('PV'). Similar age to you and I was also told I was a young diagnosee too. Isn’t it rubbish?!
I’ll share the great Blood Cancer UK information about Polycythaemia vera ('PV'), although perhaps you already know it. I found it a weird relief to read facts about what I’d be living with (rather than what I imagined about the big C), as researched by experts: Polycythaemia vera (PV) | Blood Cancer UK
May I just say I am so glad you only need aspirin, long may that last. I also take aspirin as well as hydroxyurea, a ‘mild’ chemotherapy because I’m classed as being high risk of clotting due to a previous heart attack caused by a clot. Not being at high risk like it sounds you are would be my ideal.
Definitely a shock though and 3 years after diagnosis I can say it’s become more like noise in the background rather than at the top of my thoughts for me, I hope it will be less shocking for you soon. It’s a lot to reflect on so please be gentle with yourself as you let it sink in.
I’ve found the forum really helpful for expressing this stuff, where I feel understood, and there are so many lovely forum members who live with Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV'). Maybe you’d like to read more about Myeloproliferative neoplasms ('MPN'): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Sounds like you’ve read around the forum so do keep doing that and please reach out to others. You can use the search box at the top too. Despite Myeloproliferative neoplasms ('MPN') being considered rare there’s a lovely bunch of folks living with them who post around the forum. You’re certainly not alone with that pesky Polycythaemia vera ('PV') here @nict.
Do please let us know how you get on, I’ll keep an eye out for your posts.
I was diagnosed at 38 and now 44.. can now say once you’re understanding of the condition and know what to look out for as in things to expect and what things look like when you’re not great along with being on the right treatment.. life can be as normal as it is right now. I’m still working full time in a highly stressful job and hardly anyone knows or can see that I’m not “well”.
It may sound controversial but I think mentality on your diagnosis if you deem yourself as “fit” “normal” or “fine” has an impact of what happens next.. Polycythaemia vera ('PV') when managed, can be seen as a “be aware and carry on” type of thing.
some can see the diagnosis as a sign of you taking time of some self care - slowing down - giving yourself some rest
Some can see the diagnose as a relief to know that enduring the symptoms without knowing what’s caused it adds validity that you’re not losing your mind about how you’re feeling.
some get anxious and scared by the label of having cancer and relate to people they know with other forms or experiences or the fear of not fulfilling the responsibilities they have with their relationships, dependents, job, finances etc
the important thing is to note that everyone experience and position is different.
though it’s not good to see more people diagnosed with the condition, it’s great to see more people using the charity and the forum to build a community of people with Polycythaemia vera ('PV') to discuss, share experiences and ask and respond to questions.