I’ve had Polycythemia Rubra Vera for 16 years. I just discovered today (by chance) that I am classified as having blood cancer. Is this right?
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Yes is was classified as blood cancer in 2016. So you’ve mayve been told it was a “blood disorder” when you we diagnosed
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Hello there @Jerome, welcome to the forum, although it sounds like you’ve been doing well to live with Polycythaemia vera (PV) for so long!
Like @Rammie18 says, Polycythaemia vera (PV) has been considered a blood cancer for many years, although not all our haematologists have kept up to date—when I was diagnosed with it in 2023 I was told emphatically that it’s not a cancer. I was lucky to be able to change doctors to someone who knew what they were talking about.
Anyway, perhaps you might like to read the Blood Cancer UK information about Polycythaemia vera (PV): What is polycythaemia vera (PV)? | Blood Cancer UK
Here’s information about the family of blood cancers that Polycythaemia vera (PV) is part of, namely Myeloproliferative neoplasms (MPN): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Hope that helps! Glad you found us. May I ask what’s helped you over the years to tolerate your diagnosis?
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Hello Duncan,
I am already very much regretting that I posted my question on here. You seem to think I’m lucky to have lasted this long when until this morning I had no idea I was going to pop my clogs momentarily. Christ!
Enough with your amateur doom-mongering, leve it to the professionals.
Oh goodness. I’m so sorry that my response to your question has upset you so much, that was genuinely not my intention. As a survivor of what you say you’ve been living with, I simply wanted to answer your question and offer support. It is a shock to be diagnosed with Polycythaemia vera (PV).
Anyway, I think there’s been some confusion, so I’ll end here and suggest you speak to your specialists instead.
Hi Duncan,
I apologise for my response … I realise you’re here to do good work. Although this unwelcome news changes nothing for me, it still came as a shock yesterday to be ushered under the dread umbrella of ‘cancer’ with no warning or support. I will indeed be talking to haematology (when I can get hold of them.)
Keep up the good work! 
Jerome
Hi @Jerome,
Welcome to our online community forum. I’m sorry to hear that you have only recently found out that Polycythaemia Vera is classified as a blood cancer. It’s very understandable this has come as a shock after living with the condition for 16 years.
I can see that @Duncan and @Rammie18 have already shared some helpful information and links to our resources around this.
The main purpose of the forum is to provide a safe, supportive space for people affected by blood cancer to connect with each other. You can find out more about what to expect and how to use the forum in our terms of use.
If you would find it helpful to talk things through in more detail with one of our experienced blood cancer nurses, you would be very welcome to contact the team on: 0808 2080 888 or by emailing support@bloodcancer.org.uk.
Take care,
Tom Beddow
Support Services Manager
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