Just diagnosed with Jak2 Polyuythemia Veru three weeks ago. My doctor said it’s not cancer, it’s a blood disorder, but every search I do says it is definitely cancer.
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Hi @grandmato10 welcome to the forum. I hope that you find it very useful. I don’t have any direct knowledge of your condition but Blood Cancer UK have an excellent support line that have more specialist knowledge and help you find the answers that you are looking for Blood cancer information and support by phone and email | Blood Cancer UK This might at least put your mind at rest. It’s always best to talk things like this over with specialists as online information can sometimes be inaccurate and frightening as I found when I was first diagnosed with Myeloma back in 2018. Hope that you find the answers you are looking for and do let us know how you get on.
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Welcome @grandmato10
I too have Polycythaemia vera (PV) and I unfortunately encountered the same problem when I was newly diagnosed.
long story short - Polycythaemia vera (PV) is an Myeloproliferative neoplasms (MPN) which are forms of blood cancer.
it was described as a blood disorder pre-2015 but the World Health Organisation (WHO) re-classified it as form of cancer due to an overgrowing of cells.
It’s unfortunate that not all medical professionals know this as if they are recalling their knowledge from their studying it maybe that they are basing it on old information.
mentally some people may call Polycythaemia vera (PV) just a disorder because they prefer to saying they have cancer as it’s not related to what people stereotypically know about cancer ( we have no tumors or lumps) and don’t necessarily look like someone with cancer.
Depending on your location - the fact Polycythaemia vera (PV) is classed as a blood cancer may open up avenues of care and support that may make things easier for you.
I’m happy to offer any life experiences of Polycythaemia vera (PV) and answer any questions you have from a patients perspective.
there are quite a few of us with Polycythaemia vera (PV) on the forum so you should never feel alone here:)
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Hello there @grandmato10, welcome to the forum. I’m really sorry to read about your diagnosis and that your doctor said it’s not cancer, what a confusing time I imagine it is. I’m really glad you found the forum.
In 2023 I was diagnosed with Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))) and my haematologist also told me it was not blood cancer. He prescribed me with hydroxyurea and told me it wasn’t chemotherapy. Like you, searching any reputable blood cancer source online states that Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))) is cancer, and has been classed as such for years by organisations such as WHO, like dear @Rammie18 says. From what I’ve been told by my specialists, all blood cancers are blood disorders, but not always the other way round. Anyway, I changed doctors as I struggled to trust mine after his unforced errors and other poor care.
Perhaps, as your doctor has shared contradictory information about your diagnosis, you might like to read the great information Blood Cancer UK has researched about living with Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))): Polycythaemia vera (PV) | Blood Cancer UK
Here’s their information about our family of blood cancers, Myeloproliferative neoplasms (Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN))): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
If you wanted to talk to one of the specialist nurses at Blood Cancer UK they can be reached free on 0808 2080 888. They can advise on how to receive accurate information about what you’ve been diagnosed with, and how to live well with it.
I just wanted to end with some reassurance from my newly trained great second haematologist in that he reassures me we can live with Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))) into normal old age with treatment, and that we are more likely to die with Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))) than from it.
Do please let us know how you get on, and don’t hesitate to reach out for more information @grandmato10.
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