Is Polycythaemia Vera really rare?

Bit of a left field question this, but watching the new numbers clock up on a Facebook page and a sudden flurry of Polycythaemia vera (PV) club members on here, has made me wonder if our rare blood cancer is rare or just really good at hiding under loads of other symptoms?
It seems to fall into two camps, you’re younger and fairly fit, heart issues or you make to around 60 and the medical interaction increases and more focused.
So is it rare or are the work of sites like @BloodCancerUK slowly making a difference in awareness to the medical profession and possibly, the dental profession?
Personally, given all that this cancer has taken from me in my personal life, I feel we all should be given a biannual blood MOT, where they look for everything. Build upon the use of AI to deal with the numbers. Spend a £5 here and save the £1,000’s down the line.
After all a £2 box of a couple hundred aspirins in a lot cheaper than a visit to A&E and intensive care with the result of not being diagnosed.
I guess the same could be said of Essential thrombocythemia (ET) with it’s range of symptoms too.

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A very personal reply @clickinhistory but Blood Cancer UK and other blood cancer charities are really working hard to raise awareness of all blood cancers out there with health care professionals and the public.
I think there is a rise in private health MOT’s out there, not blood cancer specific, and perhaps not as often biannual.
I think we can all play a part and when I am at the hospital or doctors and walking in the summer I always wear a Blood Cancer UK tee shirt and it is always a talking point.
I know I have veered off your point of it being a Polycythaemia vera (PV) specific rise in diagnosis and interesting point you raise.

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Interesting indeed, @clickinhistory. I’ve wondered this myself as I went from never hearing about any kinds of blood cancers to suddenly having a family member and myself diagnosed with MPNs and getting to know others here on the forum unfortunately being diagnosed and living with them.

Something I’ve noticed is that many of us with Polycythaemia vera (PV) and other MPNs on the forum are ‘younger’ (as in, considered young survivors—personally I feel ancient) and I can’t help but note that younger folks are just generally more online, share more, and are more open about these blood cancers. Younger folks grew up using the internet and are more au fait with technology, apps, seeking information online and so on.

I think also it’s pretty easy to get a blood test nowadays and we can check the numbers ourselves to spot anomalies. These are where we find our weird elevated blood cell numbers after all. So many indications of our blood being adrift or doing atypical things in just a little vial. Being able to notice unusual blood cell counts ourselves probably makes it easier to seek further clarity.

I think this all corresponds with @Erica pointing out that organisations like Blood Cancer UK are doing a great job of alerting people of all ages to these horrible disorders.

Unsure about Faecesbook though as I don’t use it. Are there decent research-based Myeloproliferative neoplasms (MPN)-related groups on there? I used to find social media a bit of an echo chamber full of armchair specialists and not very helpful for rooting out real statistics.

But I do wonder how many of us are out here living with Polycythaemia vera (PV) and its evil siblings. I’d love to know the statistics, should any of the @BloodCancerUK_Nurses know?

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How rare is it? I have no idea. I never heard of it before I was diagnosed. Also apart from this forum, I do not know anyone who has been diagnosed with Polycythaemia vera (PV).

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@Erica , the private medical MOT’s are cashing in on fear, social snobbery and an engineered undermining of the NHS, like many, my cancer was missed despite many blood tests because they were not looking for it. A simple full blood count test looking for other things, would have saved me and others, including the NHS, millions over the years.
PS how can they see the t-shirt under the Pilates gear and big floppy hats? :wink:
@Duncan I don’t think it is an age tech savvy thing, more a inner need to reach out to your new tribe and find out more that you feel you can trust. Though hard to trust info coming from a medical resource named after something you put on chips, sandwiches and salads.
The FB page is just for people with Polycythaemia vera (PV) based in the UK and despite some doing the pools numbers requests, it does a good good of directing people to sites such as here.
@Liz59 funny, I have been binge watching the whole of House and they have used Polycythaemia vera (PV) as a possible cause several times. In the UK, they think between 8,000-10,000 people have it. Given our hide and seek symptoms, I think that number is actually a lot higher.

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It does feel a bit like finding your tribe, doesn’t it? Glad that there’s so many of us here in clan Polycythaemia vera (PV) of the Myeloproliferative neoplasms (MPN) family to support and share how we live with it.

I agree that more frequent blood tests as standard would give us a head start in finding these cancers. Are routine blood tests really so infrequent around the UK? Sounds like many folks on here can access their test results via an NHS app, but perhaps that’s not available to everyone? Maybe blood tests could be included in annual checkups and/or after a certain age threshold, like with the colon cancer tests offered after age 45. I’ve got used to annual blood tests, but then my heart health has been checked since my heart attack with blood testing and occasional “stress tests” which found I had genetic high cholesterol. Yay genetics.

Much as I hate to suggest a benefit to AI, it could be trained to look for patterns in our hypothetical annual blood test results, for example, which might be missed by our doctors. Saying that, I just found out my healthcare organisation had a major data breach including personal information of patients, so I’m feeling distinctly off technology right now, as you can imagine!

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@Duncan it is not about accessing your blood count results, it is about setting up a system where the NHS can plan better for the future, have real time monitoring of the nations ill health and spend where needed.
Just a simple mot every couple of years, which is strange as we have to do our car every year after the age of three. Says a lot about a society’s priorities :frowning:
Now about that data breach, you really subscribe to Little pink pandas? :wink:

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I think we’re agreeing, no? Maybe I’ve confused the points you’re making, so apologies for that. I’d say it would help if the NHS was funded better so I guess that depends on it being valued more by whoever is in government, rather than privatising various services around its different Trusts.

As for subscribing to little pink pandas, I honestly have no idea what you mean! Sounds cute though, perhaps it’s a naughty euphemism :rofl::panda_face::thinking:

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Hi Clickhistory,

There seems to be a low awareness of Polycythaemia vera (PV) among GPs. In 2016 I was diagnosed with persistent Thrombocytosis by a GP. This simply means I always showed a high platelet count. It’s more a description rather than a diagnosis as far as I can tell (I’ve no medical training). There was no referral and no further investigations. With hindsight this was Polycythaemia vera (PV). I was diagnosed with Polycythaemia vera (PV) a couple of months ago. However, my Polycythaemia vera (PV) symptoms go back many years before 2016 so it could have been picked up years earlier by other GPs. I’m not complaining or criticising, just describing my experience. As I understand it, the problem is that a high platelet count can have many other causes and most of them are trivial.

As to whether Polycythaemia vera (PV) is rare, apparently the JAK2 mutation is fairly common. Perhaps one person in thirty has it (quoting my consultant). However, in the vast majority of cases they don’t have a Myeloproliferative neoplasms (MPN). Presumably they have plenty of cells with the unmutated gene.

It might be sensible to offer low dose Asprin to everyone 50+ years old. Might well save lots (in every sense) in the long run. Not suitable for everyone of course.

Lucky

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Hi Lucky, I came across this research on the JAK2 mutation, (@Duncan chief medical research new assistant) showing that the role of our Polycythaemia vera (PV) mutation might be down to something else. The caveat, being more research needed to find out why.
So although the JAK2 mutation is fairly common in the general population, the real answer is “Don’t have a clue mate” and “Best guess scenario is” :wink:
When you list all the symptoms we get, it does seem to be a mimic cancer and easily missed or lived with as just one of those things of getting older.
The news that they have discovered a potential test that spots cancer protein markers 7 years before diagnosis is a step forward, as I was tested for cancer three times and it came back zero despite the symptoms. The only one that came back with a possible warning was prostate cancer given my family history.
Which is why I asked the question, given numbers are going up due to better understanding of the cancer or just luck in the technological advances ?

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