Been told I have polycythaemia

So today, I randomly got told I have polycythaemia over the phone by a nurse,(confirmed when I called my doctors), And that am seeing a blood doctor (sorry am dyslexic)in October (earliest appointment I can get).

I googled it and am now worried? - No one has sat me down and told me I've got this issue, and what they doing about it?  I see there is a few different stages / types.  I've got most of the list of things you may have with polycythaemia too. 

Is it a blood cancer or is it just polycythaemia until it turns in to PV? - My partner and me just had a new baby and we both worried  about stuff.

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  • There are 2 main types of polycythaemia. Primary and secondary.  Primary is a form of cancer (it was re classed as a cancer a good few years ago), and secondary as the prefix alludes to is caused by another underlying condition. The common causes are living at high altitudes, lung disease, chronic dehydration etc.

    I had secondary, must be hitting on 15 or so years ago. Mine was caused by drinking a lot of alcohol, and drinking zero water. I never drank water for years. Luckily, my warning shot that i had an issue was a superficial blood clot. During the testing phase, the haematologist said to me, would i be sat here in the state i was if i was being diagnosed with type 2 diabetes. I said probably not. She stated, if there was someone next door, the same age getting a diagnosis of diabetes, and me getting a PV diagnosis, I'd out live them. That kinda calmed me down.

    But yeah, after all the tests came back, mine was ruled as secondary. Took me months of drinking a lot of water, and giving up the alcohol to get my numbers down again. The reality of this condition for many sufferers, they die with PV, not from PV. There are a lot of PV sufferers out there living decades after their diagnosis. Older people (70+ with the condition usually have comorbidities), and struggle with it more. You're symptoms should get a lot better once it gets treated.

    You'll read stories about how this can heighten your chances of getting leukaemia, but that's just a very, very small number of people. You're talking single digit numbers. Like i said, there are many people with decades under their belt with PV

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  • There are 2 main types of polycythaemia. Primary and secondary.  Primary is a form of cancer (it was re classed as a cancer a good few years ago), and secondary as the prefix alludes to is caused by another underlying condition. The common causes are living at high altitudes, lung disease, chronic dehydration etc.

    I had secondary, must be hitting on 15 or so years ago. Mine was caused by drinking a lot of alcohol, and drinking zero water. I never drank water for years. Luckily, my warning shot that i had an issue was a superficial blood clot. During the testing phase, the haematologist said to me, would i be sat here in the state i was if i was being diagnosed with type 2 diabetes. I said probably not. She stated, if there was someone next door, the same age getting a diagnosis of diabetes, and me getting a PV diagnosis, I'd out live them. That kinda calmed me down.

    But yeah, after all the tests came back, mine was ruled as secondary. Took me months of drinking a lot of water, and giving up the alcohol to get my numbers down again. The reality of this condition for many sufferers, they die with PV, not from PV. There are a lot of PV sufferers out there living decades after their diagnosis. Older people (70+ with the condition usually have comorbidities), and struggle with it more. You're symptoms should get a lot better once it gets treated.

    You'll read stories about how this can heighten your chances of getting leukaemia, but that's just a very, very small number of people. You're talking single digit numbers. Like i said, there are many people with decades under their belt with PV

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