Finally diagnosed with PV

Recent diagnosis
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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.

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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.

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@nict

thanks for posting

can only echo what @Duncan has fantastically said

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.

again thanks for posting

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Hi @nict and welcome back to the forum, though I’m sorry to hear about your diagnosis.

@Duncan and @Rammie18 have already said many of the things I’d be saying, but I wanted to add that alongside the wonderful community, our Support Services team is also there if you’d find it useful to talk things through with one of our blood cancer nurses - 0808 2080 888 (option 1) or support@bloodcancer.org.uk.

Take care,

Ceri - Blood Cancer UK Support Services

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Hello again @nict, may I ask how you’re doing?

It’s been a few days but I had a look through your old posts and wow, what was up with your consultant forgetting so much?! Is she still your main specialist? I’m sorry to read you’ve been dealing with blood test results that seemed ‘off’ for so long. Well done for persevering to figure out what was not right.

In case you wanted to give it some thought, we can ask for second opinions and in fact ask for a different specialist altogether. It’s a strange fact but sadly I’ve read forum members say that their haematologists have told them they’re not experts in Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV'). Perhaps your consultant was one of those. My first haematologist told me that Polycythaemia vera ('PV') was not blood cancer, so he had to go!

If you’d like to speak with an NHS liaison then there’s NHS PALS and NHS PASS Scotland, both of which can offer “confidential advice, support and information on health-related matters.”

And like dear @Ceri_BloodCancerUK says, the specialist Blood Cancer UK nurses are just at the end of the phone on 0808 2080 888 and can advise on any queries you might have.

Please remember that the forum really is here for you @nict.

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Hello Duncan and thank you for your reply.

It’s nice to speak to people who are in the same boat so to speak and find out how they deal with the condition and what to expect so this is a good place to be.

I know I am lucky to just be on aspirin at the moment, but my consultant has said that could change if my results change over time so I am prepared for that in the future. I am just taking it as it comes and will see what happens :grinning_face:

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Hi Rammie.

Thanks for replying and for giving me insight on things I have been thinking.

I too work full time in a stressful job and and haven’t really mentioned my condition to anyone as I feel fine so just carry on as normal. Perhaps seeing myself as ‘normal’ is the reason why I don’t say much as really there isn’t much to say! I get tired, but then so do lots of people so unless things change for me in the future I will probably keep mentally pushing onwards as I always have!

I hope to learn more from others with Polycythaemia vera ('PV') and also offer support if I can. I am a ‘newbie’ to all of this, but maybe there might be something about my journey that could help or reassure someone else, we’ll see.

Thanks for responding :grinning_face:

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Hello Ceri,

Thank you for the info - most appreciated :grinning_face:

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Hi Duncan,

So, yes, my consultant! Thankfully I am not under that person anymore, but sadly it did take moving house and having to get another referral to sort it out. I was basically ‘lost’ in the system for several years as the original consultant wasn’t doing anything at all, but refused to release me back to me GP. She was 100% positive that I didn’t have Myeloproliferative neoplasms ('MPN') and when I asked for some sort of indication as to what it was she told me ‘I’d had a lot of treatment’ and that ‘sometimes we don’t find an answer’ which didn’t leave me with much confidence.

Anyway, luckily when I moved to a new area I saw my new GP and told her the story of being left with no outcome (she wasn’t impressed) and she chased up the consultant who said I was still on her review list! Seeing as I hadn’t seen her for years was a surprise as she wasn’t actually doing anything. I finally got referred to the haematology team at the new local hospital and they diagnosed me within a few months. Basically the evidence was there, but the old consultant hadn’t joined the dots.

It’s a long story, but I actually had symptoms almost 20 years ago which were picked up in blood tests, but I found out later that when my GP at the time put through for further testing it was denied. So I guess the likelihood is I have had this for a very long time and just didn’t know which I believe is the case for most people.

I can’t fault my new consultant and I am very impressed with the team at the new hospital so it has worked out in the end.

Sorry, that was very long-winded!

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Hello there @nict, lovely to hear from you. No need for any apologies, you’ve held onto this worry for many years so do please feel free to share as much as you want to. I see you’ve been welcomed by dear @Rammie18 (hey there Rammie!) who first greeted me when I joined the forum, and I love that you would like to reassure others too.

Thank goodness you’ve already changed consultant, your first one sounds like they did truly lose you in the system, and may I say I’m just so glad nothing serious happened in between. She was clearly 100 % wrong about Myeloproliferative neoplasms ('MPN'), kind of amazing considering your history of blood test results.

Uncanny really about you having an idea that something was not right for so long, I’ve also wondered what triggered the clotting that caused my heart attack as I was healthy and active. I presume too that it was an early sign of Polycythaemia vera ('PV') but my newer haematologist can’t say for sure.

Blood tests are amazing, aren’t they?! There was a discussion around the forum a couple of years ago about how beneficial it could be if everyone had annual blood tests on the NHS as so many conditions can be found that way.

From my non-medical understanding, I imagine you’re having frequent complete blood tests (CBCs) to check how your haematocrit is behaving, and perhaps your CBCs show that your haematocrit is staying below 45 %? This seems to be the magic number for whether we Polycythaemia vera ('PV') survivors need to have blood removed via phlebotomy as it indicates how thick and viscous our blood is. If you ever need phlebotomy then you likely already know but it’s basically the same as blood donation, except our blood is thrown away.

After my diagnosis I needed phlebotomy really often until my blood thinned and brought my haematocrit below 45 %, fortnightly at first, then monthly if needed, and now every other month if my haematocrit is too high. I haven’t needed blood removing since last year though as my blood is thin enough now. My haematologist tells me that my hydroxyurea dosage is doing the job of decreasing the overproduction of blood cells so I probably won’t need phlebotomy anymore, good job medicine!

You mentioned taking aspirin for now and this really is great from my understanding. Polycythaemia vera ('PV') is considered a chronic type of blood cancer and thus should only develop slowly, if at all. There are many forum members with Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV') who live into normal old age without their treatments changing. In fact, my haematologist tells me I am much more likely to pass away in old age with Polycythaemia vera ('PV'), rather than from it, which I find very reassuring.

Even if you begin to need treatment beyond aspirin then it’s very unlikely to be a sign that the Polycythaemia vera ('PV') is transforming/progressing to something more acute like Acute myeloid leukaemia ('AML'), but maybe keep that at the back of your mind.

We have a small risk of Polycythaemia vera ('PV') changing to Myelofibrosis (‘MF’) too. With the hydroxyurea I take there is a slight risk of developing skin cancer (apparently very treatable), so I need to be more careful in the sun now always using a high SPF sun lotion, and keeping hydrated is more important as my skin dries out from the medicine.

So I feel I have just bombarded you! Hopefully not, I just wish you’d had all this information before. I also hope nothing I’ve shared is a horrible surprise, but I remember back to my first rubbish haematologist completely omitting to tell me even basic stuff and kind of wishing I’d known more. If there’s anything you want clarity on please just ask, and do look more around the forum for those of us living with Myeloproliferative neoplasms ('MPN').

Hope that helps @nict, please keep us posted about how you get on and any changes that come up. The forum is here for you.

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