Hi I’m new here have been diagnosed with ET with mutation of MPL gene … mixed feelings and confused as I don’t feel that I know a lot or enough about it even after talking with doctor also I really hesitate to say I have blood cancer for some reason . Hope everyone is doing well
Hi @Sds89 a great big welcome to our forum.
I think what you have said makes so much sense and although I have another blood cancer and was diagnosed 19yrs ago I definitely had similar thoughts and feelings.
I think a diagnosis is a tremendous shock, I remember thinking that this cannot be happening to me, I can’t have blood cancer.
You have entered a world that speaks a new medical language and it is natural to feel confused and on a whirlwind roller coaster that you have no control of.
Perhaps you have an opportunity now to write a list of questions that you want to ask at your next medical appointment. Also perhaps you can write down the answers you get as I find when I am in shock that I cannot take in too much information.
I could not explain to others what I did not understand myself.
Have a look at the Blood Cancer UK website and if you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
We are also here for you.
The main thing is to be ever so kind to yourself and please keep posting
Thanks @Erica yeah it’s a shock you’re always in state of believe and denying. I’ve felt in pervious app that doctor said everything that he needs to say yet still can’t remember most of the conversation I always ask for the appointment report to be sent that helps me reading it carefully. I’ve been given blood cancer booklet I always go back to it . ( sorry for the broken English Ian not a native speaker)
Hello SDs89 - welcome to the forum as you will find support and help here. Being newly diagnosed is a strange time and it takes some time to adjust to having a rare blood cancer and all the elements of it and any treatment - but you will get there over coming months. Yes often consultants at hospital are very focused on our blood counts (and rightly so) but don’t always realise all that needs to be known about the disease and it’s effects, what is normal, what to look out for and how to deal with side effects etc - so often learning from other patients helps! If you have not done so yet, do take a look at MPN Voice a charity for the specific blood cancers that ET comes under and also Leukaemia Care run two monthly online zoom meet ups for ones with ET if you would find that helpful (just a chat and sharing of experiences). I also have ET diagnosed 16 years ago so appreciate how it is for you in those early days so just keep letting us know any questions or concerns you have, as although MPNs and ET are rare there are still many of us that you can be in touch with. All the best
Hi @Sds89, thank you for sharing and a very warm welcome to the forum. It’s so very understandable for you to be feeling confused at this stage. I appreciate it’s all still so new for you, and it’s normal to feel this way- do take your time to process things at your own pace. You’ve been given some great suggestions here, and that’s good to hear you’ve asked for appointment reports to help you keep track. We are here with you on this journey, and you’re very welcome to reach out to our Support Team if you’d find it helpful to talk things through (0808 2080 888 or firstname.lastname@example.org).
Take good care of yourself.
Thank you I only diagnosed a month ago so still very new to me all the terminology is overwhelming I think it’ll get better with time .
Thanks I’ll do I am finding a lot of help on the website already thank you so much
I am also newly diagnosed with MPN- not certain yet if it is ET or Polycythaemia vera (PV). I have been reading about high platelet levels since the end of March when I saw my pre op blood test results for a knee replacement. The platelets were higher than the high count in a previous pre op blood test for my other knee, which was replaced in May last year. I agree with others who recommend MPN voice, Macmillan are also very good, and the hospital I attend has good clear information (UCLH, Macmillan Cancer Centre) this whole thing is very hard to get to grips with, and I am probably not even beginning to do that as I only had MPN diagnosis 9 days ago and waiting for results of bone marrow test I had today to know if it is ET or Polycythaemia vera (PV), but I have found reading lots about it helps- I am learning the terminology and finding out what’s going on, which makes me feel more in control somehow. Best wishes to you
Really sorry- auto correct keeps putting Polycythaemia vera (PV) in full, not me!
Hi dear @Fem thanks for replying I’ve been diagnosed on January at beginning doc thought I had Polycythaemia vera (Polycythaemia vera (PV)) too …. I barely can say that I have blood cancer …. At the beginning it was overwhelming I cried a lot … I had too otherwise I wouldn’t be able to carry on . But now I feel it’s at the back of my mind I choose to not make it take over my life . Overall I am healthy and happy
Hi @Fem yes, the auto correct does kick in on most cancer names.
Hi @Sds89 being overall happy and healthy sounds good to me. Look after yourself
Absolutely yeah I agree @Erica