Has anyone checked MPN's on the Macmillan website recently? E-mails needed to get them to update their information to W.H.O. classification

[Borage]

I was annoyed that such an important Cancer Charity in the UK still referred to MPN as a disease and put it under headings of Pre-cancerous conditions.

An Internet search for ET led me to the Macmillan website where I was given this out of date information.

The proper classification of MPN's is significant when people need to make claims for medical insurance and for prescriptions for chemotherapy.

Macmillan do a lot of good for Cancer patients and their families, and usually provide very good information. Perhaps some e-mails would help to get this site up to date?

Thanks, Borage

[Aime]

Hi Borage, Just checked in and sent my email to them!! Well spotted. Hopefully more of the forum members will email them. Kind regards, Aime

[StanM]

When I was diagnosed with PVR with a Jak2 positive result, I emailed the Macmillan team on their web site as I was in shock and I was trying to make sense of it all. I was shocked at the reply I got. I was told by the person answering the email that he was sorry for my diagnoses but this email address was only for people that where very ill and had cancer. This created even more uncertainty and bewilderment. I felt like a fraud that had been caught and was in front of the jug pleading guilty. My next appointment at the specialist I clarified I did have a form of cancer and the facts about it.

Please not this is not a slur on the Macmillan team as I am still of the opinion that the work they do is vital and necessary and is carried out with the utmost professionalism. However I do think it would be nice if the Macmillan site was updated and this type of condition was acknowledged.

[Borage]

Hi Stan, Thank you for your reply. Have you filled in the complaints e-mail in the contacts section of the Macmillan website?

I told a friend at Church that I was upset because of my diagnosis and was told it was "nothing serious then, not like cancer!"

It is a shock being told you have a cancer without having confusing and wrong information. I hope you have had better support through MPD voice.

Best wishes, Borage

[Aime]

Hi Guys, complained to Macmillan and they are looking into it. They say they are aware that MPDs were re-classified to MPNs. Will let you know how I get on. Regards, Aime

[Borage]

Hi Aime, I too had an e-mail to say that Macmillan will have a look at their website information in light of the 2008 WHO reclassification of MPN's.

Thank you for contacting them.

Regards, Borage

[sparko35]

Hi

Not sure if this is relevant, but after an initial blood test at my GP surgery i was referred to the local hospital for further blood tests, and to see the haematologist. He told me he thought it was polycythaemia vera, but would have to do more tests to make sure. On the same day he sent me to the Macmillan unit in the same hospital to have a venesection, also prescribed aspirin to be taken once a day. Since then i have had an ultra scan and several more blood tests, and 2 more venesections all done in the Macmillan unit. Still not had a confirmed diagnosis. My point is if polycheamia vera is not considered to be a cancer by Macmillan then why would i be treated in there unit why not just treat me in the haematology dept i find it very strange is anyone else treated in a Macmillan unit or in a different dept?

[Hidden]

Hi Borage

Sorry for the delay in responding to your post (been on holiday) I read your email the same day I was leaving for a two week holiday abroad. I sent an email to Macmillan before leaving for the airport and I have received the following response from Macmillan:

Quote:

" Thank you for contacting us and bringing this to our attention. I have been in touch with one of our specialist advisers and am also contacting our Chief Medical Editor. We are going to make changes to the website so that essential thrombocythaemia and other MPNs are not classed as precancerous conditions. We’re planning on having a new page with some brief information about blood cancers in general. This will then lead to the more detailed information about MPNs. The details are still being worked out with our specialist advisers. As all our new content has to go through quality assurance processes it will be a while before this change becomes visible on the website. But I wanted to let you know what action we are taking."

Thank you for prompting us to write to Macmillan Borage, I am so please this has resulted in a positive outcome.

Kind regards Mallard

[Aime]

Hi Guys, have received similar response from Macmillan as Mallard got so sounds promising. Regards Aime