ET - is this a blood cancer, a bone marrow disease or what? I was diagnosed in 2007 - ET (JAK 2 positive) but I am still confused.

[janesid]

[Mazcd Partner MPNVoice]

Hi Janesid, the advice that we publish in our ET/PV booklet is that until recently there was some debate about whether MPDs/MPNs such as ET and PV are types of cancer. This is because the word 'neoplasm' (new growth) is a term that has been used both for cancers (malignant neoplasms) and non-cancerous tumours (benign neoplasms). Now, because both ET and PV are characterised by uncontrolled cell growth, most haematologists and cancer organizations do classify them as a blood cancer. Whatever they are called though, remember that the symptoms and prognosis can vary widely. Your specialist will advise you depending on your individual circumstances. In someone with ET the bone marrow makes more platelets than the body needs. I hope this helps, if you or anyone else would like a copy of the leaflet please email me with your postal address. Kind regards, Maz.

[janesid in reply to Mazcd]

Thanks Mazcd. I will email you my address so that you can send me the booklet.

[lizzziep in reply to Mazcd]

My haematologist said although ET is in the same group as cancer it isn't actually a cancer despite the fact that I am being treated with low dose chemo. I was told it was a bone marrow disorder. I expect different people call it different things. As long as we are getting treatment and are reasonably well I don't mind what it's called

[ETphonehome]

Hi Janesid,

It is a chronic malignancy of the bone marrow / blood cancer.

ET.

[janesid in reply to ETphonehome]

Thank you for your response.

[Borage]

Hi Jane,

The World Health Organisation now classifies Myeloproliferative Neoplasms as cancer. The previous name Myeloproliferative Disorder needs to be scrapped.

Macmillan Cancer Support still insists on classifying them as pre-cancers which is wrong and they should know better. We are not afraid of the word cancer.

The treatment, following the NICE guidelines, which all NHS Haematologists should be using, is the same.

The only difference the classification makes is that the NHS must now pay for our prescriptions.

The more you can learn about your condition the more you will feel strong and in control.

Best wishes,

Daisy

[LouisePRV Volunteer in reply to Borage]

Well said Daisy, my feelings exactly!

[Aime in reply to Borage]

Hi Borage, just to add to what you have said about getting prescriptions paid, it also means Jane that Critical Illness claims are usually successful. A few of us did complain to Macmillan and they were supposed to be changing their description of MPNs to cancerous and not pre-cancerous conditions. They did say it would take them a while. kind regards Aime

[tommy123]

i am confused to i have had et four 5 years and on magic trial

[Twinkly in reply to tommy123]

Hi tommy ,do you feel better now you are on the Majic trial ,is it good for you now you found us ..have you got your buddy yet?? Twinkly. X

[janesid]

Thank you all for your responses. I very much appreciate them. I am looking forward to reading the booklet Maz is going to send me. I tried to research the change of status by the World Health Organisation but could not find anything - and of course, Macmillan does not recognise it as cancer - not yet anyway. My condition is managed very well by my consultant in Ninewells Hospital,Dundee. I suppose it's not really important what we call it, as long as we manage our health as best we can. Thanks again. Keep well.

[dorotea]

Hi Janesid

I also have ET, have done for about 15 years. At first I was confused, like yourself about the nature of the illness, but now after much reading and searching know it is a cancer - a cancer with a difference as it does not spread anywhere else , but nevertheless considered as such, I believe it is a type of cancer of the bonemarrow which produces in our case, platelets undiscriminately. I had to have a bonemarrow biopsy to confirm the ET, though I think now it can be confirmed without having to do that. However, I think we are lucky to have this type of cancer which does not spread,

and also that there are treatments to keep the counts as near to normal as possible. Best wishes.

[janesid in reply to dorotea]

Hi Dorotea, Thank you for your reply. I was lucky enough not to have a bonemarrow biopsy to confirm my diagnosis, something I did not relish having to go through. There seems to be a lot of progress in the Genetic Field just now - who knows - maybe one day they will find a cure.

[Swede]

Hi,

one that really cares what we call it, is the travel insurence company! Say it is cancer and it is a no,no...sigh...

[Loubielou]

Hi there. I also have ET and am JAK2 pos (diagnosed in 2009), and have been somewhat confused on how to classify it - blood cancer or bone marrow disorder… When I was in the process of making a critical illness claim, my insurer asked me two key questions. Their first question was whether it was malignant and secondly was it invasive? On advice from my haematologist, I responded yes to both of these questions because ET is a clonal (and therefore malignant) condition that is invasive (present throughout the body – in the blood and bone marrow). I was successful in my claim. So I guess that's how I now think of it. Best wishes, Loubie.