Hi everyone, hope you are all doing well. Just a little update from me.
Had my first haematology appointment yesterday, going through the process of finding out if I have Essential Thrombocythaemia ('ET'). I’ve already had negative JAK2, CALR and MPL results. I thought I’d be going through symptoms with her to see what happens next, and had kept a diary for a month, but to be fair, I didn’t really know what to expect.
It didn’t really go like that, she didn’t want to look at my symptom diary, but did ask me about alcohol, smoking, family history and asked about my migraines, any clotting history. I need to back on Monday for the BCR-ABL blood test and a full blood test, depending how that goes she said they might do a bone marrow test or watch and wait. I mentioned a few symptoms and she said I need to see my GP instead.
I think I’ll wait to see what happens with the blood test first, see if the platelets have gone up or down, take it from there. I wish she’d gone through symptoms with me but I guess she knew what she was looking for at this stage. More waiting it is!
That first appointment can be very daunting can’t it because you don’t know what to expect and have to put your trust in consultant.
Waiting can be one of the most frustrating parts of our journey and something I found really difficult.
If you feel you need to discuss things more after you have the results, you could request another appointment. Do you have a clinical nurse specialist who you can speak to?
I think it’s still really important to keep a diary of your symptoms so that you can let them know of any changes. They may want this information in the future.
I have copied on the @BloodCancerUK_Nurses who may be able to help with some of the medical parts of your post and perhaps support you with what you need to ask following the blood results.
Here is the helpline number if you would like to talk things through
Hi, many thanks for your message. I did have a good chat when I joined a few months back, so grateful for all the advice. I’d promised to do an update after my haematology appointment.
I think I was a bit confused about what the blood test on Monday was as I’d thought it would be the NGS test when she said it was another gene test, not BCR ABL. I think she’s saying I’m low risk of Essential Thrombocythaemia ('ET') now, but checking for other blood cancers. It’s very hard to make sense of all of it, but hopefully getting closer to finding out what’s going on. But yes the waitings so hard.
Sorry to hear you are going through the wait! I had a similar experience.
I waited about 3 months from a thrombotic event till my 1st appointment with the haematologist. I went in with great hopes that he would tell me what I had, but he just asked for family history etc and sent me off for additional blood tests, and to return in another 3 months! I was in disbelief that someone else could not have done this seemingly simple job prior to the appointment, it felt like a waste of a consultant’s time. But I waited.
My 2nd appointment (with the same haematologist) was a very different experience. He had new, clear information for me, explained things in a way I could understand and gave me plenty of time to ask questions. He was kind, understanding, and sounded very knowledgeable.
The appointment ended with requests for some new tests and guess what, another 10 weeks to return! I dread the wait but I can only think he is being thorough. Besides, some results can take several weeks to come back.
I hope your next appointment will be better and you will feel you are in good hands.
Of course keep checking other people’s experiences here, as unfortunately it seems not everyone gets good care and sometimes things need to be addressed, but I thought to share my positive feedback as if may help you at this time.
Thank you so much for your message because I have come away disappointed and confused, so it was good to hear your experience!
I think looking at or asking about symptoms was something I’d expected would happen, and she confused me by asking why I was there, I told her well I’m under investigation for Essential Thrombocythaemia ('ET') and she said where did you hear that word. So, feeling a bit confused as to why we were discussing the obvious, I said it said monitoring for Essential Thrombocythaemia ('ET') on my medical notes, that’s where I first heard the word and she made a big point of telling me you look nervous but you don’t have Essential Thrombocythaemia ('ET'), you can sit back now (I sit forward because I’m deaf and don’t want to miss anything), she kept telling me to sit back. It ended up she was saying you haven’t been diagnosed with Essential Thrombocythaemia ('ET') we’re testing for it, you are low risk, but we’re testing still. I had also thought if there was going to be another gene test out would be the NGS.
End of the day they know what they are doing, and hopefully after these next tests we’ll get somewhere.
Thanks again for your message, really appreciate it.
Hi @Ljj I see why the experience wasn’t good… I would maybe explain I needed lean forward to hear better. Let’s hope the next appointment will be better.
Hi Cecilia, yes I’ll definitely mention it if she does it next appointment, just a bit taken aback at the time. Definitely hoping for a better experience next time.
