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.
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.
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?
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).
@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? 
@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.
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!
@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 
Now about that data breach, you really subscribe to Little pink pandas?
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 
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
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”
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 ?
Hi Clickinhistory, yes, as you write, it could be better understanding of the cancer, it could be just luck in the technological advances, but it could also be that Polycythaemia vera (PV) is becoming more common. Possibly due to the huge number of chemicals we encounter daily which do not normally occur in nature (or a combination of exposures).
Based on the literature it seems to be about 3 in a million thus Polycythaemia vera (PV) is rare!The one I have, Mycosis Fungoides T Cell Lymphoma,is 5 in a million and is considered rare.I don’t know what the incidence rate has to be before they don’t become rare.Even something like 100 in a million is pretty uncommon I’d say.
Wow fascinating, thanks so much for sharing those stats, @Kevan7. I’m sorry to read of your diagnosis. So Polycythaemia vera (PV) really is rare. I wonder, where did you find those numbers?
I can’t remember but I just looked it up somewhere.Figures tend to vary a bit with rare things as they don’t have much data but you can get a rough idea.
Hi, Duncan! As I am new to the Polycythaemia vera (PV) clan, I have been doing a lot of reading and, despite knowing for certain that I have read these statistics over and over again, I hadn’t made a note of them anywhere, so I have been off and looked for them in various places again. Here is a quick (-ish!) compilation of what various organisations and academic articles say about the incidence (newly diagnosed cases) and prevalence (total numbers) of people with Polycythaemia vera (PV).
Organisations
I couldn’t find anything useful on the NHS website and not much on the NICE (National Institute for Clinical Excellence) website, either, other than NICE saying that the UK prevalence, based on the population enrolled in the Health Improvement Network, is approximately 6.8 per 100,000.
The National Organization for Rare Diseases in the US: the prevalence in the US is approximately 44 to 57 per 100,000.
American Leukemia & Lymphoma Society: For all races and ethnicities, the incidence of Polycythaemia vera (PV) is approximately 2.8 per 100,000 population of men and approximately 1.3 per 100,000 population of women. The prevalence (estimated number of people in a population with a diagnosis of a disease) of Polycythaemia vera (PV) is approximately 22 cases per 100,000 people. (Taken from their Polycythaemia vera (PV) factsheet.)
Cancer Research UK’s website had no numbers that I could see, and just says that polycythaemia vera is a rare blood cancer that affects the bone marrow.
Similarly, the Canadian Cancer Society has plenty of useful info, but no easily discoverable figures on prevalence or incidence.
The Josep Carreras Leukaemia Foundation website says that in Spain, the incidence of Polycythaemia vera (PV) is 4–6 cases per million inhabitants per year (Taken from their Polycythaemia vera (PV) information section). I had been though everything in Spanish before I noticed that there was an English version of the website! It’s a really thorough and well-organised website and well worth a look.
Academic articles and research
There is an excellent article in the Wiley online library from the American Journal of Hematology entitled ‘Polycythaemia vera: 2024 update on diagnosis, risk-stratification, and management’, in which a population-based study of 6,281 Swedish patients with MPNs, registered between 2000 and 2014, found that the age-standardized incidence for all MPNs was 4.45 per 100,000 person-years, and for Polycythaemia vera (PV) was 1.48 per 100,000 person-years.
US National Library of Medicine article: ‘Myeloproliferative neoplasms’: Bicky Thapa, Salman Fazal et al: - It is more prevalent in males as compared to females, with a male to female ratio of 1.8:1. The estimated incidence of Polycythaemia vera (PV) ranges from 0.4 to 2.8 per 100,000 per year.
Another article in the US National Library of Medicine: ‘The classification of myeloproliferative neoplasms: rationale, historical background and future perspectives with focus on unclassifiable cases’ - The myeloproliferative neoplasms are a heterogeneous group of clonal hematopoietic stem cell disorders, characterized by increased proliferation of the myeloid lineages in the bone marrow. These disorders primarily affect adult to elderly patients with a cumulative annual incidence of 1–5 cases/100,000.
A final article in the US National Library of Medicine, this one from BMC Cancer: ‘The aetiology and burden of myeloproliferative neoplasms in the United Kingdom: the myeloproliferative neoplasms: an in-depth case-control (MOSAICC) study protocol’: Nouf Abutheraa et al – Myeloproliferative neoplasms (MPNs), previously termed myeloproliferative disorders, are a group of haematological malignancies that affect the myeloid cells in the bone marrow. The classic MPNs include polycythaemia vera (Polycythaemia vera (PV)), essential thrombocythaemia (Essential thrombocythemia (ET)) and primary myelofibrosis (PMF). Collectively the conditions affect approximately 7.9 per 100,000 individuals in the UK, with Polycythaemia vera (PV) and Essential thrombocythemia (ET) more common than PMF. Source: Statistics by World Health Organisation ICD-O-3 groups: Haematological Malignancy Research Network.
American Society of Hematology published a study in Vol. 120, issue 21 entitled ‘Epidemiology of myelofibrosis (MF), polycythemia vera (Polycythaemia vera (PV)) and essential thrombocythemia (Essential thrombocythemia (ET)) in the European Union (EU)’, which used a variety of platforms, databases and registries to source its data. In the UK, that included the UK Hematologic Malignancy research network, and across Europe, the RARECARE project, which is responsible for surveillance of rare cancers in Europe, based on data from 88 cancer registries in 22 European countries, and includes cancer cases diagnosed from 1995 to 2002. For Polycythaemia vera (PV), the researchers found that even if terminology and coding was consistent (which it often wasn’t), estimates still varied depending on the registry used. RARECARE reported a prevalence of 5.5 per 100,000 and Orphanet reported a range of 10–50 cases per 100,000.
Companies
Novartis issued a press release on NICE’s final draft advice on Ruxolitinib for patients in England and Wales, in which it says that Polycythaemia vera (PV) is a rare and incurable blood cancer associated with an overproduction of blood cells in the bone marrow, and an estimated 1,130 people are newly diagnosed with Polycythaemia vera (PV) in the UK every year. It cites incidence figures from three sources: the US Leukemia & Lymphoma Society’s Polycythemia vera booklet, Myeloproliferative neoplasms (MPN) Voice’s Polycythaemia vera booklet and the Haematological Malignancy Research Network’s incidence statistics.
The Swiss website Mein patienten portal – hematologie – la polycythemie vraie – causes et frequence says that across Europe between 0.4 and 2.8 people per 100,000 are diagnosed with Polycythaemia vera (PV) and I’m sure I have seen that figure elsewhere, too.
The Novartis Educational Guide for Polycythaemia vera (PV) Patients (which is excellent and really reader-friendly; I could only find it in Spanish, but it’s probably available somewhere online in English – if someone can find it, please post a link to it – on the basis that I am not the only person who is barred from posting links here!) says that Polycythaemia vera (PV) affects between 5 and 30 people per 100,000 each year in Europe, and it is estimated that there is one new case per 100,000 each year in Spain.
I think that’s enough to be going on with! I hope it helps!
All the best,
Janet
P.S. Sorry - I’ve had to remove all the links, as I am still getting the error message saying that I can’t post links. It’s so frustrating! I tried just removing the ‘http’ bit from them all, but that didn’t work, so I tried removing the ‘www.’ from them all as well, but that didn’t work either, so I’ve just had to remove the whole address. What a hassle…
The question was based on the numbers recently joining a UK Facebook group suddenly increasing.
So the deep question for the weekend, if you put us rare Polycythaemia vera (PV) lot together in a room, are we still rare?
How big is the room? Would there be enough of us to fill it? Presumably our rarity (or otherwise) would depend on that!
@JanetF Tory MP’s lounge, plenty of space now BOOM TISH 
topical humour.
But I travel over the UK and sometimes I go past stadiums and wonder if Polycythaemia vera (PV) suffers could fill it.
If current estimates of about 12,000 of us in the UK are right, it means we could fill Grace Road cricket ground in Leicester and have space for a picnic on the grass
Oh, yes, @clickinhistory, I have been watching the election coverage the whole day, having watched it for much of the night (we are 2 hours ahead of the UK in Kenya at this time of year, so the polls didn’t close till midnight our time), much to the confusion and amusement of my housekeeper, who can’t understand my fascination with it! 12,000 Polycythaemia vera (PV)-ers in the UK doesn’t sound that few, does it? Especially if we would all fit into a cricket ground with space to spare!
Hey there @JanetF, this is all such fascinating information! Thank you so much for sharing. Nice global summary too.
Also wanted to say a big welcome to the forum, fellow Polycythaemia vera (PV) survivor. I’m sorry you live with it too. I see you’re outside the UK like me, funny that we go ‘home’ via BCUK for reassurance with all this. Isn’t it comforting to find others on here living with our weird rare blood cancers who know what it’s like?!
The idea of a stadium full of people living with Polycythaemia vera (PV) is hilarious to me. Imagine the cacophony from us all comparing statistics
I’m really over the moon for the UK to have a whole fresh new government @clickinhistory, very exciting to see change is afoot. It’s been too long since it’s felt like the UK was united about anything!