Hi there

I noticed no one has replied yet and hopefully someone who has experience in this area will come along soon. It's horrible waiting for results, the mind can go to really scary places, There could be a number of different reasons hematology wants to see you so try not to jump to conclusions.

 Easier said than done but we've all been there I just kept myself busy and focused on the here and now rather than what-ifs.

Wishing you the best x 

Thanks i really appreciate the time you took to reply. Kind regards Elaine 

Please come back and let us know how you got on

Hi, i had scans done on my abdomen and chest

xray last week. Got my results today, i have essential thrombocythemia. My white blood cells are just over 1000 consultant said they should be around 400. Well that explains the tiredness and pins and needles in my finger tips....

Has anyone any experience of this ?? Its a cancer of the blood ?

Still hasnt sunk in

Hi, i had scans done on my abdomen and chest

xray last week. Got my results today, i have essential thrombocythemia. My white blood cells are just over 1000 consultant said they should be around 400. Well that explains the tiredness and pins and needles in my finger tips....

Has anyone any experience of this ?? Its a cancer of the blood ?

Still hasnt sunk in

Years ago i went through numerous tests for polycythaemia (in the same group of disorders, but it involved the red blood cells). The good news, treated properly, people tend to live normal life spans. They can be kept under control for decades, and most people live normal lives. I was told, diabetes type 2 is worse as far as complications and prognosis are concerned.

I know it doesn't make things less scary at the moment, but you'll be around for decades to come. At least they can now treat it, and you can get back to feeling normal again. Your outlook is good.

I'm 99% sure there's a large thread on your very condition on these very forums. Maybe someone more savvy with the forums can link the thread for you. It os considered a type of blood cancer, and whilst not curable, it is very treatable.

Here's a snippet from the official charity site:

"Although there's no cure for essential thrombocythemia, treatments can control symptoms and reduce the risk of complications. Life span is expected to be normal despite the disease. Treatment of essential thrombocythemia depends on your risk of blood clots or bleeding episodes"

Thanks so much for taking the time to reply to my post. 

Kind regards Elaine 

Hello and thank you for your post. 

I can understand that you would want to find out more, given your recent news.

Essential thrombocythaemia (ET) is a rare blood cancer that causes a high number of blood cells called platelets to form. These cells are involved in blood clotting.

It is one of a group of conditions called myeloproliferative neoplasms or myeloproliferative disorders.

We have more information on the diagnosis and treatment of essential thrombocythaemia. Thrombocytosis describes a platelet count that is too high.  One of the reasons for this high platelet count may be the condition called essential  thrombocythaemia but there may be other reasons for a high platelet count.

Have a read about the information on Essential thrombocythaemia here.

www.cancerresearchuk.org/.../thrombocythaemia

The charity MPN Voice provides information and support, 

https://www.mpnvoice.org.uk/

This charity is also helpful,

bloodcancer.org.uk/.../

I hope that this is useful,

Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Yours sincerely,

Vanda