Can anyone please point me in the direction of the best statistics for prevalence of Essential Thrombocythaemia? Blood Cancer UK and Leukaemia UK seem to vary considerably from roughly 1 in 24000 to 1 in 127000. My reason for asking as I am recently diagnosed and local hospital states they see loads of patients but statistically they can’t, unless it’s a ‘hot spot’ area for some reason.
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Hi @Driftwood welcome to our Blood Cancer UK forum.
Firstly probably statistics depend where they get their data from in the country and world.
I realise this is on a much smaller scale but when I was diagnosed with another common blood cancer I was the only one at my surgery with it so they would have one statistic.
A nearby surgery of a similar size might have 2 cases which would give them a very different statistic.
In my area some hospitals also specialise in certain conditions so are referred all patients in their area, making it a hot spot I suppose, but not really because it has a larger catchment area of patients.
This is a personal reply and not a reply from a statistician or medical person.
How are you doing?
I look forward to hearing more about you.
Really look after yourself and please do keep posting
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Thank you for replying. I would hope that nationally and then internationally those variances would be taken out of data analysis. That would help to identify causes and treatment options. I was surprised that 2 UK based research charities appear to have stats that vary so much. Hopefully I’ll find an answer to the conundrum!
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Hi @Driftwood it’s too much for me, I will refer your post to Blood Cancer UK for you @BloodCancerUK-SupportTeam
Take care of yourself
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Hi @Driftwood
Thanks for your post and a big welcome to our Online Community forum.
One source of data about prevalence that we have shared here previously is from the Haematological Malignancy Research Network. They have a factsheet about (Essential thrombocythemia (ET)) here: HMRN - Factsheets
It says: “With an annual incidence of 4.2 per 100,000 people, an estimated 2,720 people are newly diagnosed with essential thrombocythaemia each year in the UK.”
It also estimates that 20,170 people who are currently alive in the UK will have been diagnosed with essential thrombocythaemia during the last 10 years.
I’m not sure where you are based, but perhaps the hospital has a specialist team that sees patients with Essential thrombocythemia (ET). This is just a guess at what they may have meant.
In case it is useful to you, here also is our information on Essential thrombocythemia (ET): Essential thrombocythaemia | Blood Cancer UK
If you have any further questions, don’t hesitate to get in touch - our forum is a supportive place to come for anything that comes up for you with this diagnosis, or we have support services you can contact too: Blood cancer information and support by phone and email | Blood Cancer UK
Take good care of yourself.
Kind regards,
Ali
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Thank you ! Very useful. Completely different data from that provided by Leukaemia UK. Appreciate your help.
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Hello there @Driftwood, welcome to the forum. I’m sorry to read of your diagnosis and the fatigue you’re living with, but it seems like you’re keen to makes sense of it all by seeking answers from the right place!
Personally I think Blood Cancer UK is really excellent overall and always where I come first for up-to-date research. The specialist nurses here are truly lovely and other forum members also really care. I hope you come to find it as helpful here as I do.
I see @Ali_BloodCancerUK has share some great links—I was fascinated to read more about the statistics for the Myeloproliferative neoplasms (MPN) I live with, Polycythaemia vera (PV), which is closely related to Essential thrombocythemia (ET) but has a different prevalence and prognosis. Prognosis is very specific to each of us, depending on whether we had a clotting event previously and our ages at diagnosis, which determines whether we are at high risk or not of further clotting and what our treatments will be. Your local hospital may say they see loads of patients but MPNs are clearly very rare!
Leukaemia seems to be the most widely known group of blood cancers, and I note when I tell people about my Polycythaemia vera (PV) that they often ask if it’s leukaemia. In a few situations I’ve been told it is leukaemia and I’ve had to put my polite Myeloproliferative neoplasms (MPN) hat on to describe the differences, despite not being a haematologist! Anyway, I believe there are something like 130 different blood cancers so I’d say just focus on the one you live with for now.
I’d never heard of Leukaemia UK and having looked at their website I don’t see much information about MPNs, let alone Essential thrombocythemia (ET) or Polycythaemia vera (PV) or other even rarer MPNs. MPN Voice is an organisation with information specific to MPNs and they offer a buddy service, should that be of interest. Couldn’t ever find any NHS information even mentioning MPNs, unfortunately, so I haven’t bothered checking again. LLS is the closest American equivalent of Blood Cancer UK and in my opinion offers some great information, but bear in mind it’s US-centric.
I haven’t found any other organisations I’d go to for information as many seem to be tied to pharmaceutical companies or specific medicines, which seems a little conflicted to me. I’d say steer clear of social media groups as they tend to be echo chambers of opinions rather than facts, in my experience.
As you mentioned you have fatigue, I wonder if you’d be interested to know that there are some simple ways to benefit our energy levels? I had truly terrible fatigue after I started taking daily hydroxyurea last year and it really got me down as I’d previously been very active. This sort of cancer-related fatigue is not merely tiredness or “deconditioning”, as some would like to tell us. It’s more akin to exhaustion due to our bodies dealing with blood cell overproduction and changes and aching in the bones where our blood is made.
I found this meta-analysis of research about cancer-related fatigue and ways to improve energy levels while living with cancer, and maybe you’d find it interesting too. It basically shows that doing slow stretchy exercise like yoga, qigong, tai chi and Pilates can actually rather counterintuitively improve energy levels. Getting daylight into your eyes early every day (“bright light therapy”) helps stabilise our circadian rhythms and thus improves sleep, improving energy. These work for me, an anecdotal case study of 1.
Anyway, hope this helps. How are you getting on since diagnosis? Hopefully you have loved ones you can share your experiences with, and a supportive haematologist. I’d say keep notes of any physical changes and how you’re feeling as this can inform your treatments in the long-term. Do keep us posted about how you get on @Driftwood!
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Think you for all this really helpful information! I’m hoping the haematologist is supportive too but it’s hard to know yet whether symptoms are Essential thrombocythemia (ET) related or NHS based stress related. It’s certainly a tricky path to negotiate to get support. Still, it is early days and I am gradually starting to focus on relaxing and finding reliable sources of information, but not over researching.
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Hi @Driftwood relaxing sounds good to me, have a good weekend and please do keep us updated
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As Disraeli is said to have said,'lies,damned lies and statistics 'although some sources attribute said quote to Mark Twain however no sources on the rarer cancers agree.I known with mine, Mycosis Fungoides T Cell Lymphoma, various sources say various things about life expectancy, disease progression,etc and about the only thing that they agree about is not knowing what causes it!
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Driftwood Just a thought that those of us with MPNS are under hospital care for many years so although the hospital has treated lots of patients with Essential thrombocythemia (ET) ,I would wonder how regularly they get new patients. Hope that makes sense. It’s good that you are under the care of a hospital with experience of treating Essential thrombocythemia (ET). Best wishes Liz 59
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