Hi Lennie1980,

Think your Doctor is simply not trying to freak you out but that is the point as there is nothing to be scared or overly concerned about as although the WHO have classified ET as a type of blood cancer it is not life shortening in itself and for majority of people very easy to manage and for some like myself there are zero side effects. No doubt there are lifestyle changes you'll need to make due to the medication your most likely to be on which thins blood and suppresses your immune system but they are not that onerous to be honest e.g. blood thinners means you'll need to more careful about cutting yourself and binge drinking is not on the menu if on an immune suppressant.

To give a reference point you're much more likely to die from simply getting out of bed in the morning or crossing the road - this statement comes from stats I learnt when I used to sell life insurance.

hope this helps you frame ET better. Reach out if you have questions as there are plenty people happy to help. Ta

Thank you for taking the time to respond to me. This helps enormously as they did mention those words (polycythemia) 

thanks

Karen

Many thanks this is very helpful 

As Rocco said, feel free to post as and when you need to talk. No matter how people dress it up, the initial diagnosis is scary. After all, the term "cancer" is universally scary. We all associate that word with the worst possible outcome. But seriously, once you get your head around it, and begin to put things in perspective, 20 years from now, you'll probably not even blink an eyelid at it. It will just be something that is in the background. All things being normal in your life, and barring other unrelated things, you'll still be here until a ripe old age. Just keep on top of it with meds, lifestyle changes or whatever and you'll be fine.

Thank you. I feel after these responses I will sleep better tonight. I've put a few questions together for my dr too and I'll email those over.

what is the benefit to having the bone marrow test done?

thanks

karen 

The bone marrow test simply allows them to gets actual cells to confirm the diagnosis or to even rule it out. Bloods can show one thing, but if the bone marrow is fine, then it could be something else causing it. It's why these conditions are broken down into primary and secondary categories. Primary means it's directly caused by your marrow, and secondary, which is more common btw, is being caused by something else. Such as medications, other non cancerous conditions and so on and on.

The last thing they want to do, and you want is to be treated for something you don't have. If it's secondary, then they will have to investigate the underlying cause. It can be as easy as changing meds, to more complex stuff such as maybe a certain type of chronic infection etc. I dunno, the ins and out as I'm not an expert, but you really want that marrow test.

The marrow test is done in the hip region. I was uncomfortable for a few days. But nothing paracetamol didn't take the edge off.

Thank you ProfBaw this is so helpful and I really appreciate you taking the time to reply

Hallo Rocco,

Good to see your post and find that things are going well with you.  I wonder if Chorister and Sabie will have noticed it too?  I'm still OK and enjoying the spring.

Love and best wishes to all.

Many thanks for this.

Im tired all the time at the moment- is this a symptom of ET or maybe it's just related to something else.