Diagnosed with ET yesterday

I am so confused! My consultant said don't worry it's not cancer yet everything I read says it is. She said they don't usually offer BMB now but I could have it if I wanted - what would I gain by having this?

my platelets are 660 - is that low ish?

should I be worried? The reading of info is scaring the hell out of me to be honest. I'm meeting family later today and no idea what to say. I don't even know if this is a blood cancer.

so many questions and feel totally in the dark.

  • Hi Fletchallum,

    I just wanted to let you know that our nurses are out of the office over the Bank Holiday weekend but they will get back to you as soon as they can once it re-opens on Tuesday 30th May.

    Kind regards,

    Steph, Cancer Chat Moderator

  • I thought this may be the case. Many thanks for letting me know.

    best wishes

     

  • Hello Fletchallum and thanks for posting,

    I am sorry to learn that you are feeling in the dark about your recent diagnosis. I think many people in similar situations can feel this way, there can be a lot to take in and it isn't uncommon to have unanswered questions later on. It might be a good idea to try and arrange an appointment with your GP or ask to see the specialist again to talk things over. Or perhaps if there was a specialist nurse at the appointment they would be worth contacting.  

    Essential Thrombocythaemia (ET) a type of Myeloproliferative Neoplasm (MPN) - there are other types too. MPNs were reclassified a while back by the World Health Organisation as a type of blood cancer. This is because they are diseases characterised by too many blood cells, but there are at the lower end of the spectrum of blood cancers and many doctors still don't really think of them in that way.

    Our website has more information about ET at this link  And there is a charity called MPN Voice that has more informtation here and also offers support. 

    I'm afraid I don't know if you would gain anything by having a bone marrow biopsy, your specialist is best placed to answer this. But as far as I know ET can be diagnosed without one.  And I am not sure how to interpret your platelet level, it is above the normal range which goes up to 450, but in general the specialist decides what sort of health risk the disease might carry for each patient and when to treat. You are usually told about this when you are diagnosed, so if you weren't or can't remember the detail I do think you need to speak to the specialist again. 

    Give us a call if you want to talk anything over.  Our number is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Wishing you the best, 

    Julia

  • Many thanks, Julia. I'll get in touch with my consultant to ask a few more questions.

    really helpful advice. Much appreciated