ET uk

[Hydrox]

Why does the rest of the world say ET is a cancer, when the UK says it is not.

[Crofty7]

Hi Hydrox, as far as I’ve been told it’s classified as a type of cancer in the uk too.

Check out mpnvoice.org.uk

[LucyGeering]

Hi Hydrox! It’s classified as a cancer by the WHO. What I’ve found (I’m in the U.K.) is that consultants and any MPN specialists all define it as a cancer without question, but some GPs classify it as a blood disorder. I put that down to levels of knowledge about MPNs.

I applied to my GP practice for prescription exemption for meds connected with my MPN (ET); they wrote me a letter saying that they’d collectively decided that ET wasn’t a cancer and refused my application. I’m sure this is actually down to budget. So I mentioned it to my hospital consultant, who signed and organised another application for me, and now I get my ET meds for free.

[Tico in reply to LucyGeering]

Hi lucy,unfortunately not all consultants in the Uk believe or acknowledge that ET is a cancer even though it was re-classified in 2008 along with other MPN'S, My own haematologist dosen't see it as a cancer nor talking to other patients in clinic i've met do's he believe the horrendous symptoms patients present with in the beginning and continue to do so. I think it differs from constultant to consultant but the important thing to me and others here is not what they call it but please reconize the symptoms that can be quite severe at times. Atb,tina.x🤗

[LucyGeering in reply to Tico]

Hi Tina.

From what I’ve read on this forum, it seems equally important to some of us here that it’s recognised as a cancer. For me, that means my debilitating symptoms and side-effects are taken more seriously, and that I’m eligible for cancer patient support. For example, I’m not working at the moment because my ET symptoms are too unpredictable, so getting my meds for free is a real help. I’m also getting emotional and therapeutic support from a local cancer charity who classify MPNs as cancers.

To others, it may not be so important - they might not need this support, or have a high symptom burden to deal with. My mother suffered greatly with her MPN and very sadly died from it. So I’m afraid my perspective on the gravity of these illnesses comes from this close experience and knowledge.

It’s not ideal that your medics refuse to accept the WHO’s classification, but as long as it doesn’t affect your treatment then perhaps it’s ok. I know some patients prefer not to think of it as cancer, which is slightly different, and which I understand.

Lucy x

[Tico in reply to LucyGeering]

Hi lucy, i think you might have misunderstood me, i certainly think it's important that it's treated and reconized as a cancer, my point was that not all haematologists see it as cancer but a disorder of the bone marrow,which it was previously classified as until 2008. I also have experience of the symptom burden and having 2 strokes,but the fact is that as well as some gp's some of our haematologists don't reconize it as cancer and it is not just my consultant, i know their are others on here who's consultants still call it a disorder and i believe it as effected my treatment and others on here regarding how we have been treated. i.e, if we had the more well known cancers they would not leave you in pain, not just me but others on here with an mpn have to suffer with the likes of bone pain and headaches just because our haemo's don't reconize it as cancer and that is the sad truth. You are very lucky in that it sounds like you have a good team that treat and support you but some of us have to seek out an mpn specialist for help,something i'm in the process of doing this morning. Wishing you all the best.tina x.🤗

[LucyGeering in reply to Tico]

Hi Tina,

Ok. When you wrote “the important thing to me and others here is not what they call it”, that sounded like you didn’t think it should be classified as a cancer..! So I’m glad we’re in agreement there.

I think you possibly misread my first message - I started it by saying “what I’ve found...”, so, I was only speaking from what I’ve experienced, which is really only what any of us can truthfully do. It took me 4 years to get the right diagnosis for my MPN. Now tbh it seems to be hit & miss whether I get see the nice consultant who accepts it as a cancer, or those who are less experienced in MPNs and don’t, so that’s an ongoing challenge. I’m certainly not denying any one else’s experience with unhelpful consultants, just putting a view forward. I thought I’d made clear that it was just my viewpoint, so I’m sorry if not.

I do know about MPN classification pre-2008 - my Mum was diagnosed with hers MPN back in 1999, and as I said, she had a bad time with hers (PV progressing to MF. I have ET JAK2+). She died in 2009. So believe me when I say I know more than I’d like about these illnesses!

Good luck with finding a specialist. I got a second opinion from Prof. Adam Mead, who I can’t recommend highly enough. He’s in Oxford, which is much too far for me to regularly travel to, so I’m sticking with my current team and have promised myself that I’ll seek full referral to an MPN specialist if my illness gets worse. I totally get that it’s an all ongoing battle - the illness, the treatment, and the lack of medical knowledge about it - and wish that we didn’t have to deal with any of it,

Lucy 🧡

[Tico in reply to LucyGeering]

Totally agree 100% with you,sometimes it's hard when we do suffer with symptoms and have to battle to get people who don't know about the condition but when some haemo's don't reconize it as a cancer and a lot of them don't reconize the symptom burden some of mpn'ers have,some are lucky in that they are asymptomatic. I hope you keep your promise to yourself about seeking out an mpn specialist if your condition gets worse. Like i mentioned i'm in the process of doing that and can't believe someone like myself as put up with my main haemo who calls it a "disorder',that what i meant to say,he can call it what he wants as long as we are treated correctly and get straight answers when we ask. It was around 6-12 months before i found out i was jak2 positive by seeing it on my File by accident! It must have been so hard to have been diagnosed with this after what happened with your mum. I suspect my dad could have had it,he had 2 major strokes, the 2nd one he sadly died from. Talking about catching different haemo's during your visits is like a lottery unfortunately but it seems you have a sympathetic haemo which is great. Best wishes to you lucy and i hope you don't have to look for that specialist.tina,🤗

[Hidden]

MPNs are definitely classed as cancer in the UK. They are sometimes referred to as chronic cancers. People in the UK who have been diagnosed with an MPN have successfully claimed on their critical illness insurance cover on the basis that MPNs are cancer. As already mentioned, people with MPNs also qualify for a Medical Exemption Certificate on the basis of cancer once they are taking any drug for their MPN - even if that is just low dose aspirin. The Certificate gives you exemption from all prescription charges for any drug.

[Ebot]

I’m not sure where you’ve been looking! The UK certainly follows the WHO criteria and classifies all MPNs including ET as blood cancers. From posts on this Forum it seems that in some other countries doctors persist in describing ET and PV etc as ‘disorders’. And there is definitely ignorance of the disease among individual medical practitioners across the globe!

[Wyebird]

It’s also classed as a cancer in the UK. Even the Macmillan foundation recognise it as a cancer. What makes you think not.? Check out mpnvoice.Org.Uk

[Hydrox in reply to Wyebird]

Nursing friends have told me it is not a cancer.

[Wyebird in reply to Hydrox]

Oh dear, time to enlighten them x

[JackLina]

Oh, it is classified as cancer in the UK. If it was not we would not be able to have chemo drugs prescribed! That is the first information I was given after being told I was had an MPN called ET and I was JAK2+. It took me a long time to come to terms with the fact that that label was advantageous.

All the best

Hope all goes well for you and you have a great haema and gp! x

[Ovingite]

Hi hydrox,

I know where you are coming from! My consultant hemo - and her team - refuse point blank to accept that ET is a cancer irrespective of what WHO says. However the treatment (hydroxy) seems to be working in getting platelets under control, so for now I'm just going along with it, but I might ask for a referral to an MPN specialist in the future.

John no

[Wyebird in reply to Ovingite]

Lol ask Maz for an information booklet for your haemo

[Dark-Angel]

I was diagnosed just before Christmas last year and the hematologist gave me a Macmillan leaflet, it is classed as a type of cancer in the UK.

[Selvamok]

At India, most of the common peoples not behaving gently with cancer patient and they are looking as HIV and Leprosy Patients.

At India all are keeping distance with cancer patient. Hence all MPN, PV patients should not classified as cancer.

When progress into a form of like leukemia then may be call cancer patient. Till that MPN, PV patients should not classified as cancer

[Swede]

Hi, not sure why you say that as my doctor here in UK, say it is a kind of cancer.

[MollyCat1]

I am confused too! I've been 'under' a haematologist (who is very experienced) since the autumn (I haven't received an official diagnosis yet, although have had various tests to rule out other potential causes for high platelets). In January the haematologist said (because all the other tests were coming back negative) that it was looking increasingly likely that I have ET. I asked her directly whether ET is a cancer of the the blood and she gave me a definitive 'no'. But then sent me home with an MPN leaflet which states the opposite. Having a BMB early April so maybe that will give a yes or no answer re whether I have ET or not, but I am not impressed with the hospital's handling of this: how confusing is it to be given one answer by an experienced haematologist but then sent home with literature which completely contradicts what they have said????

Alison

[Hydrox in reply to MollyCat1]

Exactly, they also gave me Macmillan leaflets and then a specialist nurse briefed me on what was going to happen to my body whilst I was taking the chemo meds. When I asked my consultant if I had cancer, he said that if I had asked him 3 years previously he would have said no, but that it had now been reclassified, which enabled patients to receive free medication, but he did not put it in the same category as leukaemia. As you say it is all very confusing especially when friends are discussing their types of illness including cancer, I do not mention mine as they dont recognise ET as a cancer, they are retired nurses and have told me it is not a cancer. Very frustrating, I am glad I found this forum to air my feelings, good luck with diagnosis, I have been on hydroxy for 7 years now, ET Jak2, been relatively well, although a low white blood cell count last blood test is a little worrying. Will have to see what the next one is in a months time.

[MollyCat1]

Hi Hydrox, thank you for your reply.

I agree it is incredibly confusing and I’m very sorry your condition is not easy to discuss with your friends. I’m so glad you have found this forum and hopefully it is helping you to talk to other people going through the same things. Sorry to hear your recent white blood cell count is low, fingers crossed it will be higher when you have your next blood test. Please let us know! I am just a newbie and don’t know all the technicalities but I have been on another forum like this (for a long time, years ago) for a completely different (gynae) medical problem I was having then so I know that as well-meaning as friends and family are, nobody truly understands other than people going through the same things that you are.

Hope you will keep posting!

Alison

[Devilgirl]

I'm also in the UK, up in the wilds of Cumbria, & was diagnosed at the end of January this year. My haematologist used the word cancer even before the diagnosis was confirmed & ontheletter he sent my GP described it as a rare cancer of the bone marrow. He didn't confirm ET but rather an MPN affecting the platelets. I will be asking for confirmation for ET specifically when I go to my next appointment.