Blood cancer - Essential Thrombocythenia/Thrombocytosis

[Alicay]

After a routine blood test In May my platelet level came back at 417 and after re-testing a couple of weeks ago it was 430. My GP told me that ‘if she had to guess’ she’d conclude I have ET - she just said it would need monitoring and could ultimately lead to cancer developing. I’m due a repeat blood test in 3 weeks.
Obviously I went straight on Dr Google and see that ET is classed as a (slow growing) blood cancer. Does anyone know anything about this condition? It’s supposed to be rare. It seems bone marrow biopsy is the only way to confirm if I have it. I’m a bit thrown by all this & being told (or not) I’ve this condition after just a couple of blood tests, with no other advice offered other than If platelets rise above 600 I’ll need to see a haematologist.

Please don’t panic. It’s happened to me too, like you I frightened myself with dr google, but in fact a level up to 450 is still normal, over 500 you’ll be referred to the haematology dept. I think that for a diagnosis of ET you would have a much higher figure. Just keep an eye on it.

Hi, I was told similar but after numerous blood tests here by goi g privately once a year as I have a v low ferritin level, I’ve never had less than 400 over last 10 years, then this summer a doctor abroad suggested I might have ET and he told me - please don’t Google! When I questioned him over high platelets in 2021 his answer was - we tend to worry once it goes over 1000 level.
I did Google and omg I started crying straight away, please don’t panick.

Hi
I have the opposite. My platelet level has always been low. One time they told me it was nearly zero (couldn't find any) and i was falling out on the scene cause they think i had something really lethal…
I was sent to do a bone marrow biopsy and it turned out completely normal. Then the lab told me they used “a different method” to look for the blood and they found platelets, however it was still lower than the normal value. This was already 7 years ago.
I recently did a blood test again and the platelets are still low, and the GP told me maybe “thats just me” and doesn't seem to be concerned. (I do easily get bruised but thats all)
Please be reassured and try not worry about it cause there can be many reasons behind and doesn't necessarily mean something bad.

Thank-you so much for your replies. I really appreciate the reassurance. I guess it’s just a wait and see thing. Having nosed around a few ET support groups, I can see that 430 is small fry, I have everything crossed it won’t shoot up. I think the casual way I was told by the GP I probably had ET with no further info wasn’t especially helpful….

DH has ET. We were very upset at diagnosis but there is a good chance of a normal life span.

To be honest at 430 you may well be fine. His was around 800 at diagnosis and is now just over 1000.

If you have it, there is a risk of clotting/ stroke. If you have high enough platelets you can take medication to reduce them, which mitigates that risk. Do your research though because one of the meds offered may have a chance of increasing the cancer risk.

The cancer risk depends on the type of ET you have (there are 2 different mutations that cause it, CALR and another one but I can't remember it's name).

The medicine they offer you will not help the cancer risk but it's fairly low (10-20% lifetime risk as far as I remember, depending on a range of factors).

Thanks Aria. Sorry you/your DH have to deal with it. Did he have a bone biopsy?
Have been reading up on the stroke/clotting risk and am on a big drive to lose weight and have upped my exercise.

Yes he did, it confirmed the diagnosis and told us which mutation it was.

I'm guessing you have had blood tests that showed a much higher level before?

I havent - just the two!