Hi I have Essential thrombocythemia (ET) and on watch and wait have been extended to 9 monthly rather than 6 monthly as been stable for a while. I’m just a bit anxious and a worrier and I had an ache in my stomach so basically doctor got me an ultra sound . This has shown I have gall stones but completed worried me as he said my Spleen is borderline enlarged so I don’t don’t what that means but he is going to send to Haemotology team. From what I’ve read says is common with Essential thrombocythemia (ET) but could be underlying problem. Does anyone know much about it to save me worrying so much until I hear from them
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Hi Suzy, it’s nice to meet you. My name’s Ali and I am one of the forum’s volunteers. It’s completely understandable that you’re feeling anxious right now. When you’re on watch and wait and things have been stable, any new information from a scan can feel worrying, especially when you weren’t expecting it.
It’s good that your GP is passing everything on to your haematology team so they can look at the results and talk things through with you. Waiting to hear back can be really stressful, and many people here will recognise that feeling of uncertainty.
While we can’t interpret test results on the forum, you’re very welcome to share how you’re feeling, and others may be able to talk about their own experiences of managing worry while waiting for appointments.
I hope you get some clear updates from your team soon. We’re here to listen and support you in the meantime. Let us know how things go for you.
Take care, Ali
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Hi Suzi,
I was diagnosed with Essential thrombocythemia (ET) around 2 years ago. Recently I had a CT scan on a chest issue but the scan revealed that my spleen is enlarged. Doctor at haematology phoned me to say that my spleen is around 19cm. My platelets on my last bloods were at 865, so I am in a very similar situation to yourself. My consultant has booked a new scan but I am currently waiting for a date. It’s a worry but a close eye by the team will remain on me until a way forward is reached. That’s something we can be reassured by and hopefully positive outcomes for both of us. I guess close monitoring does give you the reassurance you need but it’s still quite stressful, when you are waiting for scans and results etc. I hope you receive positive news and with your Essential thrombocythemia (ET) being stable, I’m sure you will. I just try to keep positive and I currently make a daily journal, noting changes in symptoms because each day is quite different for me. I find this very useful especially when it comes to visiting the hospital to see my consultant. I wish you all the best, let us know how you get on.
Take care
Chris x
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Thanks so much for your kind message and I also with you all the best and yes will let you know x
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Thanks so much and yes just will wait on my team and go from there maybe will be another scan.
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Hi @Suzysue75.
I have a different blood cancer but completely understand that anxiousness. This year, my checks went from 6 monthly to yearly and my mind went in to overdrive!
However, the consultant was really understanding and made it clear that if at anytime I developed new symptoms Or felt unwell I could contact them and he stuck to that.
I had to put my trust in my medical team - which is no easy feat. However, they have always been great.
It sounds like they are thorough and keeping an eye on you so that’s good news. I have Also had lots of chats with my consultant regarding it being me who will tell him when it returns or things change because I know my body best.
I still don’t find it easy but I’m getting there.
Please keep Us updated X
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Thanks for your lovely reply and yes will let you know. I feel fine in myself so hoping all will be okay. X hope you are okay and keeping well
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