Hi all today ive been diagnosed with Essential thrombocythemia (ET) over the phone. My genetic test came back positive, and spleen is slightly enlarged. I got told over the phone im now sat here not sure how to feel about it all. I will see my consultant face to face in 2 weeks time
Hi @Gemgemzr85 Firstly, that’s a lot for you to take in and I’m sure it feels very hard for you at the moment. I’m a little surprised that the haematology team found it appropriate to pass on such news over the phone rather than face-to-face as they must surely know that for many of us, receiving such news can be very distressing.
I, too, have been diagnosed - about a year ago - with Essential thrombocythemia (ET) and so, hopefully, I can pass on some reassurance and practical advice.
I would suggest having a good read through Blood Cancer UK’s excellent material on Essential thrombocythemia (ET) - see Essential thrombocythaemia | Blood Cancer UK and also materials produced by Myeloproliferative neoplasms (MPN) Voice (see Essential thrombocythaemia (ET) – MPN Voice and MacMillan (see Essential thrombocythaemia (ET) | Macmillan Cancer Support).
All of these resources are written in straightforward, reassuring language and will hopefully give you a steer on many of the questions which may be whizzing around in your brain at this time.
You might also find it useful in the time leading up to your appointment with the haematologist to start to jot down questions which you would like to ask. If friends or family come up with questions which haven’t occurred to you, make a note of these, too. If you bring this list to the appointment, you can ensure that you don’t forget to ask anything important at that first meeting. @Rammie18 - a forum support volunteer - drew up a checklist of questions which you may wish to have a look-through. Very comprehensive. And of course you may have other additional questions which are of particular importance to you. See Questions for upcoming haematology appointment
Do try not to over-worry while you wait for your appointment. (I appreciate that this an easy thing to say and harder to do…) The approach to tackling Essential thrombocythemia (ET) varies a lot from person to person and your haematologist will be armed with all of the information which will enable them to discuss your diagnosis in great detail and to agree with you a treatment plan.
Stay strong and please stay in touch here for whatever reassurance fellow forum members can provide.
Very best.
Aidan
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Hello. Try not to worry too much, as my consultant said to me “it’s a good one”! It’s scary hearing it all at first but once you’ve spoken to your consultant hopefully he will put your mind at rest.
None of us like what we’ve been dealt but we’re all on here in the same place and there will always be someone to talk to here and throw questions at.
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