Hi there. I have recently had the news i have ET as platlets high but not alarmingly high and jak2 mutation.
Ive started to get my head around this but the haemotologist now wants to do a bone marrow biopsy to rule out anything else. I have read that not all get this done so why has she asked me tk do one. Also some say blood tests are enough.
She did say its not that important and can wait weeks months years until im ready for it and in her medical opinion it is ET and even sent me home with a booklet and ET starred.
Im just scared they come back with new findings and say its not ET after i have just processed this.
I was diagnosed with the same back in January 2020 and had biopsy September 2020 with no pain or after effects.
Hi @NathanB you must be in shock from your diagnosis.
Perhaps now is a chance to write down all your questions for your medical team. If you have a CNS (Clinical Nurse Specialist) they can be helpful for questions.
It sounds as if you might have been searching for a lot of data, perhaps I have found it is best to just talk to your medical team and make sure you are happy with the responses you get.
We are here for you and if you would like to talk someone the Blood Cancer Uk support line is there for you.
Give yourself some time to process what is going on for you and be kind to yourself.
Please let us know how you get on.
I understand completely where you’re coming from, so please don’t feel alone. I was in pretty much the same position as you were a month ago - I had very high white blood cells and they were pretty sure I had CML (Chronic Myeloid Leukaemia), but they told me they needed to do a Bone Marrow Biopsy so they could medically confirm my diagnosis. They gave me the booklet, but I didn’t read it because I kept thinking “well what if they’re wrong?”. I didn’t want to scare myself by reading about a disease I might not have or waste my time, but as it turns out the doctors were correct
As for being scared, that’s a totally normal reaction when you get this kind of news. Just remember though that fear is your bodies natural way of trying to protect you, that’s all - It isn’t going to change your medical situation I don’t know about you, but I like to apply logic to all situations that scare me, and if you look at the situation logically, ask yourself whether in the long run you would gain better peace of mind from knowing conclusively what you have?
Whatever you decide, we got you <3
Interestingly, the attitude of the Haematology department up here is that they ONLY do a biopsy if the results are likely to change treatment. In my case, it was pretty obviously ET, with platelets in the millions, and diagnosis came just after the CALR mutation had been discovered. They did the genetic test, I had CALR mutation, and they reckoned that was pretty much conclusive. Set me off on hydroxycarbamide and despite the best attempts of my prostate, I’m still here after pushing a decade.
So in your position, I would ask what they think the biopsy will tell them; I know WHO criteria for diagnosis includes biopsy, but!