I ask this due to a rude comment i have had from someone on facebook - the joys of social media! this morning i logged on to see lots of photos of girls with no make up raising cancer awareness. as i am still coming to terms with having PV, this understandably upset me seeing the big C word everywhere! I decided to post a link about MPD's to raise awareness for us, this is when i had a response saying 'you don't have cancer, you have a blood disorder'
This made my blood boil! I look on the main cancer websites, macmillan, cancer research..and it just states 'rare blood disorders' it's all very confusing!!! but either way people need to be made aware of MPD's and i'm going to turn my anger/frustrations into raising awareness!
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noodles26
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Hello Noodles, I can completely understand how annoyed you are by these comments. The World Health Organization (WHO) reclassified MPDs in 2008 as MPNs - neoplasms. The advice we give in our leaflet on PV and ET and MF is : "Are ET and PV and MF types of cancer? Until recently there was some debate about whether MPNs such as ET, MF 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 ET, PV and MF are characterised by uncontrolled cell growth, most haematologists and cancer organizations do classify them as blood cancer. Whatever they're called, though, remember that they symptoms and prognosis can vary widely. Yours specialist will advise you depending on your individual circumstances." I hope this information will help and thank you for raising awareness for us all. Kind regards. Maz.
Hi Maz. It's been almost a year since this issue was last brought up and I was under the impression that MPDVoice had been in contact with Macmillan to get their website updated, but here we are still with the same problem. Has there been any further contact with Macmillan about their website? Could a petition be organized through MPDVoice to get Macmillan's attention? Thanks Stu
I know we all know it as MPD but try putting it as MPN that way you can then explain it a little better that Neoplasms means New growth. I am trying to raise awareness through doing some fundraising for our local hospital ( the ward which we go on if we need to go into hospital) and to research into the disorder. We are slowly getting there.
I think the World health Organization classes MPD s as cancer. Of course this has significance for free prescriptions etc. I must admit i have not tested that here in the UK as i am over 60 and get free prescriptions anyway.
I think the name has been changed from MPD to MPN N=neoplasm which means cancer. I have run into a nasty worded gal on Facebook who seems really invested in negating that MPN s are cancers.
It does not really matter though in the real world. Whether you call it a rare blood disorder or a chronic cancer does not change the progression. The whole conversation can be just so inflammatory....not consistent with experiencing life in a happy way. But that's just my take on it. I have ET.
Hi, you are quite right at getting annoyed but why does this ignorant person's opinion matter? As others have said being classified as a cancer makes a difference to free prescriptions and claims on critical illness insurance policies which is a definite positive!! I can't remember who said this but I think it is a great way to look at "our cancers;" breast cancer, etc would be division one in a football league whereas our mpns (if they are behaving) would be division 6.
I wrote to Macmillan some time ago and they assured me they were going to change the information they had on mpns from precancerous to a cancer. I think an approach from Maz would be great- might have more impact.
It wouldn't worry me either what a member of the public thinks, its more concerning when GP's (see my free prescription thread) don't take the time to understand them.
We are going to contact MacMillan, their website does say that the information on it is due for review this year, so hopefully it will be updated fairly soon. Maz
Well, you tell those people...the 'N' in MPN is for 'Neoplasm'...which, according to the Oxford Dictionary is:
"neoplasm /ˈni:ə(ʊ)plaz(ə)m/ ♫
▶ noun a new and abnormal growth of tissue in a part of the body, especially as a characteristic of cancer: carcinoma of the cervix is a common neoplasm in women | [mass noun] colonic neoplasm may be missed in some patients.
– origin mid 19th century: from neo- ‘new’ + Greek plasma ‘formation’ (see plasma)."
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Christmas Cards, helping to spread the Word.
How many mpd patients in uk?
sorry but covid vaccine again
Are mcmillan really aware of mpn's?
