Good morning everyone,
I’ve recently found out that I’m pregnant with a long standing diagnosis of Essential thrombocythemia (ET). I’m wondering if there is anyone on this forum that has been in the same position as myself. There isn’t a huge amount of information with this condition in relation to pregnancy. And my consultant has been very vague when I discussed pregnancy with him in the past. Just feel a bit lost in it all! TIA x
Hi @jenjen.r good to hear from you again, you say you feel a bit lost with it all.
I hope someone will be able to share their experiences with you.
Perhaps you might consider talking with your specialist nurse or medical team and really asking them all your fears, questions and practicalities if it is face to face perhaps don’t leave the consulting room till you get responses..
I find writing everything that is on my mind down actually breaks it all down as opposed to it being one big concern.
I will also copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses
Perhaps also make sure your Essential thrombocythemia (ET) is always in the minds of your maternity and GP surgeries teams, I do with different specialisms.
The main thing is that you really look after yourself and please do keep posting, we are here when you feel lost or anything else.
Hello @jenjen.r ,
Thank you for the post & congratulations on your pregnancy!!
That is exciting news! 
We are sorry to hear that your consultant has been a bit vague with information about it and it is understandable to feel the way you do, hopefully others will comment with their experience too.
In case it is useful, our colleagues at Myeloproliferative neoplasms (MPN) voice have a page on MPNs in pregnancy that may be helpful to read over and can be found here MPNs in pregnancy – MPN Voice and During pregnancy – MPN Voice.
We would advise speaking with your clinical nurse specialist about this further and explain to them how you are feeling so that they can support you as best they can. We would also check with them if there will be any changes to your treatment plan, for example, if you take medication, does this need to be adjusted at all?
Having an Myeloproliferative neoplasms (MPN) can increase certain pregnancy risks, during and after pregnancy, so it is important to get the right advice and support. If you don’t feel your Haematology team are providing you with enough information or support, then you can speak to your GP about this, they may be able to advise other options for you.
We would also recommend speaking to a midwife, if you have been assigned one yet to inform them of your concerns and they can hopefully provide some reassurance. They may also liaise with the haematology team for you too and may give you a point of contact to call if you have any questions relating to your Essential thrombocythemia (ET)/ symptoms during your pregnancy.
If you would like to talk to one of our support services nurses, please do give us a call on 0808 2080 888
Take care & best wishes,
Emma (support services nurse)