what is it, really?

You know, I don't think I've posted here recently as I live mainly in America. Am in UK for part of the year, and have had medical care there.

It seems that here, what I have, PV, is not considered by some of my Drs. as cancer. Initially (2 yrs. ago), I told my family that I had cancer as that is what my GP told me. Then my new hematologist said to my son (I was in the room) that I do not have cancer, and I will be just fine.

As I think about it, as Carrie (TV show) used to say, "I cannot help but wonder....am I a malingerer and a fake? Am I really OK?" It feels very weird.

Please let me know what you think - and maybe what Prof. Claire Harrison thinks - is this really cancer?

Thanks so much -

Monny

18 Replies

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  • Some docs call it cancer some don't. its just that's the bone marrow isn't working properly. Just get on with life as normal take the pills and don't worry. I have et take hydroxy a day aspirin. We can live as long as we would have anyway if monitored regularly, enjoy yourself and tell family not to worry.

  • It's classified by WHO as a Neoplasm ~ the definition of which is abnormal tissue growth, specifically one in which cell multiplication is uncontrolled. In other words 'cancer'.

    Most people relate to the word cancer as being someone who has a malignant cancer. So as I haven't got a malignant cancer I don't refer to my PV as that, and neither does my Doctor. When people ask me about PV I say that I have a mutant gene in my bone marrow and it doesn't regulate the production of red cells like it should.

    I take Aspirin and have venesection to control mine, plus I also have high BP and a heart Arrhythmia, so I take meds to control that. As I'm not over weight, don't smoke, have practiced Mindfullness and Meditation for many years and eat healthily they, the Drs think that the High BP/arrhythmia were caused by PV. I also suffered a stroke in 2012 ~ that has been confirmed as being caused by PV as my Hct at the time was 60.

    I try to live a healthy happy full life ~ obviously when my Hct is on the rise I feel pretty yucky, but I don't let PV get me down. I'm grateful to be alive and kicking :) Even if I topple over occasionally.

    You're not a fake or a malingerer ~ you have a chronic illness, as SpiritAsh has said enjoy your life and don't worry.

    Karina

  • Well, my husband has ET, which is the same family, and the NHS allows him free prescriptions, as it is a neoplasm and, therefore, a cancer. The NHS wouldn't do that without good reason! I don't get free prescriptions for my chronic asthma... My husband's specialist explained it as a 'chronic' cancer, rather than an 'acute' cancer.

    But as the others have said, with good treatment and a bit of luck, you should live as good and long a life as if you hadn't got it ('should' but not for certain, as a few are unlucky and it becomes acute and not chronic cancer). But you are not a malingerer, as it is to be taken very seriously, and you need to take good care of yourself, and you will have significant symptoms, which will have an effect on your daily life at times.

  • My Gp refers to it has a form of cancer ! but heam say its not cancer !! all she said was in years it could turn to Luekemia .which is blood cancer, so .... jury out on this regards Holly

  • MPNs are a type of cancer and that is the view of the World Health Organisation as well as the UK Government. All those in the U.K. who are having medication for their MPN, even if it is only small dose aspirin, are entitled to have the form signed by their healthcare professional that will enable them to get a medical exemption from all prescription charges - even if not for their MPN.

  • Think of the analogy for skin cancer....basal cell is not as bad as melanoma, but it is still a cancer and needs treatment. So yes, it is a cancer, but it is not acute like some of the other nasties.

  • Thank you all so much for answering this. I guess the jury is still out on everyone being on board with DX of cancer. I agree that if the WHO and NHS do see it as such, then there it is. I am glad though, that you can get prescriptions at no cost.

    Well, for now I am not going to care what it is called - just get on with it and enjoy my life!

    Thanks all -

    Monny

  • hi monny,

    one reason it is termed a cancer in the Uk as it entitles people to free prescriptions on the NHS . I also believe the WHO the world health organisation also catgorise MPD as a cancer.

    Town Crier

  • Thanks Town Crier! "First town on the Thames"? I think that's where I go - well, who knows? If so, I would imagine that the Town Crier would be heard at town bun throwing etc. Oh my, thinking of seeing my family again -, it does make me want to get on first flight out! Well, soon enough, and I will say that my GP there is very understanding and does know the subject, which here would be iffy.

    It seems you have done so well with these MPNs, so cheers to you and thanks for the reply!

    Monny

  • Hi Monny ,

    William the Conqueror added town criers to the existing Saxon Courts to tell people the News and less popular how much tax they had to pay,

    I have now had ET since the age of 45 Now 70 . It has nor stopped me doing a lot but i do have to have cat naps when I run out of steam. I am lucky that I tolerate Hydroxy carbamide well and it works for me.

    all the best

    oyez oyez oyez

    Town Crier

  • That is fascinating - I need to read more about this!

    So glad you're doing well with the ET, and hope you will continue in the best health -

    Monny

  • What's in a name? It all does the same thing.

  • Oo-er Shazzer. Nice One. . Father Jack the wisest Priest on Craggy Island. You could say that the great MPN cancer debate is an 'Ecumenical Matter Father'. . One of my all time faves you picked. Cheers for the laugh. And you're right JR

  • One of my all time favourite shows. An answer for every thing.

  • Go on, go on, go on, go on, go on, go on, go on, go on, go on, go on. . . . . Great to watch if feeling a tad down or sorry for yourself. . Just have 'a nice cuppo tea' and laugh yer chuffin socks off. . .

  • Ach, goan, goan, goan..

  • Hi Monny, love the father Ted clips which have been put on, you will always get tons of support and a laugh on this forum. Like others have said you are not malingering, it is a real illness which is classed as a cancer but this is to our advantage for free prescriptions and critical illness payouts. We have got what we have got so it doesn't really matter what it's called, we get on and live with it but I know the C word is so scary to begin with. As others have said they have lived with their MPNs for years, ok putting up with some pretty annoying symptoms.

    Someone else put things into perspective for me: our MPNs are division 6 in a football league and cancers which are more aggressive such as breast, bowel, etc are in division 1. You can tell I'm not a football fan!

    You have done the right thing by coming onto this forum- all these lovely people will support you and Maz, Professor Harrison and her team will help with medical queries. Keep in touch, kindest regards Aime xx

  • Thanks so much for the kind reply Aime. I have never seen Fr. Ted (!! I know - my UK family likes SVU). Sorry to seem so down about PV (I had ET first), but I have just been so sick in the last few months. It will be good to have my Dr. back from vacation!

    My grandson would love your football analogy - excellent.

    Yeah, I guess the cancer or non-cancer thing got started when my son and his wife said I was being "dramatic" and this was not cancer.

    However, lovely people like yourselves here make the journey easier.

    Monny

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