Hi, could I be making a mountain out of a mole hill? I don’t know. But after 8 weeks I finally have my hematology appointment tomorrow morning at 9. I had lots and lots of blood tests done 8 weeks ago for this appointment. I’m so anxious. I have no idea what to expect at the appointment. All I know is the tests they have sent off for, plus genetics testings. Has anyone else had this? What was their first hematology appointment including?
Tests taken are for a new diagnosis, Myeloproliferative neoplasms (MPN) (non Chronic myeloid leukaemia), jak 2 gene, PB specimen, Myeloproliferative neoplasms (MPN) panel, sent off to kings college. Can anyone give me some insight?
Referral was because I bruise easily, bleed easily, hemorrhaged massively after birth of my 2nd son which ended up me in icu 2 years ago. Extremely fatigued, blood clotting factor was picked up as someone on anticoagulant (but I am not). Thank you for reading. Anxious lass x
No doubt the appointment tomorrow has been long awaited and along that brings a lot of nervousness and anxiety especially when it’s related to medical jargon that isn’t as easily interpreted.
I think it’s important to note that it’s good to see it as a positive that they are being thorough, as any conclusion or plans of action will not on a whim.
It seems you’ve been through a lot and endured a fair few symptoms so it may come to some relief if an explanation as to why is given and hope they can then diagnose a path of preventing them from happening so you can enjoy the things you do.
Hope the appointment eases any worries and anxiety and know we are here to help should you require it.
Be sure to take someone with you if you need that physical support and get them to write down things and have your questions written down as sometimes these appointments can be overwhelming.
Hi @tuffsoxmox (anxious lass) a great big welcome to our forum and I reckon it is very natural to feel anxious before any medical appointment.
I know me and when I am anxious I forget everything I want to ask at an appointment.
Therefore I write all my fears, questions and practicalities down before I go.
As for a format of an appointment, I do not think there is one as we are talking about human beings.
I was diagnosed by a gynaecologist and 20 yrs ago so it was very basic tests in those days.
From what you say there will be a haematologist and possibly a specialist nurse in the room.
The haematologist will either talk you through the results or just give you a diagnosis or not.
Then you might be discussing the way forward perhaps like more tests, referral treatments, monitoring etc.
Then make sure you ask everything you need to.
Yes, as @Rammie18 says if you have got someone to take with you for support and to take notes it can be helpful.
Please do let us know how you get on and be kind and look after yourself
Thank you @Rammie18 ! After reading through alot of the posts, it’s quite concerning the symptoms I have which I put down to being my normal, and not relaying it all to health professionals because its my normal?
I’ve been in and out of hospital for a few years now, mild gastritis? Silent migraine? Vestibular migraines? Hormonal migraines? Tinitus? iBD? Non alcoholic fatty liver disease/medication induced liver dmamage - LFTs are constantly out for range but I’ve never been taken seriously because I’m young. (Once my ALT was 666 )
3 weeks of the month is hard for me to function due to nausea, dizziness, pain, extreme fatigue/migraine fatigue.
I had adhesions removed last Dec and they confirmed no endometriosis, but severe scarring from my csections (second baby C-section bleeding issues, put that down to a known issues of complete placenta previa and accreta. Lost 4l of blood and induced coma for 3 days) But it’s all adding up now isn’t it, so many tests and issues with no answers. I’m so scared. But all health people have said just get on with it.
I’m 99% sure I’ve got iron deficiency anaemia from the tests I’ve received back online, but only tomorrow will tell.
Thank you for your support. I really hope I’m not a fraud by posting here and it’s nothing but they are testing and being thorough, so why not ask for support out there?
Thank you @Erica Erica, I’ve told my husband not to worry thinking it’s not a big thing and now he can’t come but I have a friend dropping me off. I’m going to make a list of concerns, symptoms, questions I think. I know I’m going to forget what they say, I wonder if I can record it. Thank you for your support x
Hello there @tuffsoxmox, welcome to the forum. Bet you wish you didn’t need to be here! Seriously though, you’ve come to the right place as many people here know exactly what you’re going through and the anxiety you describe so well.
I’d second what @Rammie18 and @Erica say about writing down all your queries, worries, and any physical stuff you’ve noticed that might not fit other illnesses, as these may well be of interest to your haematologist. Bear in mind that all the tests you’ve had will only help clarify what’s happening in your body so it’s great that you’ve been checked and had those tests. Maybe these results will come to explain all the stuff you’ve had to tell yourself was ‘normal’ when you likely felt it wasn’t right at all. We know our own bodies best, after all.
I was diagnosed with an Myeloproliferative neoplasms (MPN) called Polycythaemia vera (PV) last year after a similar battery of tests to you and am now living well with it, although I’d admit that the time around diagnosis was incredibly anxiety-provoking. Fatigue was admittedly terrible, possibly from the Polycythaemia vera (PV) or maybe from the chemotherapy I started taking daily, but that’s faded now. Of course, symptoms are very individual to us all. Although you have yet to be diagnosed with an Myeloproliferative neoplasms (MPN), I want to reassure you that they can be lived with into normal old age if treatment is followed.
As for your anxiety, I’d say for now let it happen and kind of observe what it’s making you most worried about. Take notes, write it all down as it might seem less overwhelming if you can look at it written down objectively, kind of outside of the worry itself. Maybe tell your haematologist what’s coming up for you. If they’re an empathetic sort of doctor they should be able to offer logical reasons for what’s happening and hopefully share some clinical good news.
Once you know what you’re dealing with then you can begin looking into how best to live with whatever diagnosis you may get. You may find that your symptoms are due to something completely separate from blood cancers and other blood disorders. And if you do get a blood cancer diagnosis we’re here to support you.
Do let us know how it goes tomorrow, I’ll be thinking of you. Try to take someone with you so you can compare what you took in afterwards.
Thank you @Duncan I’ve taken this all into account and will update this thread after the appointment. It’s good to hear that there are others out there and living a life. Thank you
Hello @tuffsoxmox - all the best for your haematology appointment today it can be a strange experience to suddenly have blood counts, tests and screens being done for things you have previously never heard of can’t it - but as reassurance yes all you are being screened for is very normal with the symptoms you are having, it’s good you have thorough doctors that have looked at the symptoms, considered the possibility of a Myeloproliferative neoplasms (MPN) and are checking for it - all those tests you had will now give the haem dept today to have a clear picture and be able to help you further should a Myeloproliferative neoplasms (MPN) be suspected - although it doesn’t always feel like it, this is a real positive as there is much assistance for these conditions to make life safe and to be able to move forward with your life in a protected way. So keep us posted how you get on. I am someone with a Myeloproliferative neoplasms (MPN) diagnosed in my mid40s 18 years ago - but I had had blood problems first when I was 18 and at various times after but nothing was ever picked up as it was different times for testing etc - so I am pleased when I see younger ones being tested and assisted efficiently in current times. All the best
Morning, just an update, they wrote me off pretty quickly when I came in, saying everything is in range and I do not have JAK2 mutation. I explained everything as a whole and she said as everything is in range they will not look any further. Says bruising and bleeding easily could be due to deranged liver. And that the tests did not point to why I bled so much after birth and it was probably anatomical. I feel they didn’t look at it as a whole as nothing was said about low iron, all other symptoms, but jsut that it’s all in range. Left hospital, roll on 20 minutes later and I get a phonecall from the same Dr, saying they have discussed with a colleague and they want me to go in for more tests for factor 13, super rare but they want to see if the bleeding and bruising could be that. This is scheduled on Thursday, in a ward at my local hospital where chemo takes place. I feel very uneasy and I feel my gut telling me it all needs looking it again. Saying I’m discharged to not being discharged I just feel a bit strange.
Thanks for the update @tuffsoxmox.
Very personally, and not medically based, I would be pleased to get the phonecall from the Dr to say that they had bothered to discuss my case with a colleague and arranged for further tests at my local hospital for Thursday.and taken the time to ring me back.
Perhaps you might have further questions to ask the Dr.
Please do let us know how you get on, and it is how you feel which is important and completely valid.
Look after yourself
Hey there @tuffsoxmox, so it sounds like you got some really great results! No JAK2 gene mutation is such good news as it tends to be very indicative of Myeloproliferative neoplasms (MPN) (something like 97 % of people with JAK2 have an Myeloproliferative neoplasms (MPN)). There are many other gene mutations that can also indicate blood disorders, but as your blood cells are all in range it seems like you’re all clear. Such great news!
It may not feel like good news as you still want to know what might cause the bruising and bleeding and low iron, but I’d say try to take this in as positive. While I’m not a doctor, I’m hoping there are less stressful, life-altering reasons for those issues you’re wondering about.
Like @Sp4rkR4t says, there are still follow-up tests to come and hopefully they’ll get to the bottom of it all after ruling other stuff out. This may take some time as the various departments try to schedule appointments, so try to find a way to let go of worry in the interim. For now, celebrate not having an Myeloproliferative neoplasms (MPN), I’d say!
Hey there @Jilly20, just wanted to say I’ve been really appreciating your posts recently, coming from a long-term Myeloproliferative neoplasms (MPN) survivor such as yourself. I’m taking notes! Thank you so much for sharing your experiences of living with an Myeloproliferative neoplasms (MPN) so well for so long and using different medicines according to what agrees with your body over time. I guess you were diagnosed when Essential thrombocythemia (ET) was not considered a blood cancer?! I bet you’ve seen some changes in those 18 years. Hopefully your doctors have kept up to date!
Thanks Duncan it’s nice to know anything any of us say can help others, in fact I always feel it’s a “positive” use of our experiences to assist others in similar situations and those early days of diagnosis and treatment can feel very lonely and bewildering - huge benefit of forums like this where we can swop notes and be of some support. No certainly MPNs were not official classified as a cancer when I was diagnosed although my then consultant who was older, about to retire with decades of experience, always spoke of it as such from the outset which was a good thing to understand how the condition worked and of course the need for chemotherapy treatment. Thanks again for your kind words.
Aw I totally agree @Jilly20! If it wasn’t for folks commenting here about living with Myeloproliferative neoplasms (MPN) like ours then I would still be thinking all sorts of nonsense that my first, previous haematologist told me or omitted to tell me, or indeed was wrong about—he told me at diagnosis last year that Myeloproliferative neoplasms (MPN) aren’t cancers?! I’m so glad you had such a great doctor at diagnosis who was clearly ahead of their time. I wish we all had such support.
I wonder if I may ask, has much about treatments changed over the years? Hydroxyurea has been around decades now, but perhaps the side effects of taking it long-term are better understood now from your experience? I find the phlebotomy nurses I get to speak with all seem aware of the fatigue and photosensitivity that can come with taking chemotherapy like hydroxyurea, and my new haematologist is definitely up on current research. In fact, uncannily, he was taught by the global Myeloproliferative neoplasms (MPN) specialist who I raved about from the conference I attended—small world!
Keep well @Jilly20, thank you again for your support.
)
it can be a strange experience to suddenly have blood counts, tests and screens being done for things you have previously never heard of can’t it 
- but as reassurance yes all you are being screened for is very normal with the symptoms you are having, it’s good you have thorough doctors that have looked at the symptoms, considered the possibility of a Myeloproliferative neoplasms (MPN) and are checking for it - all those tests you had will now give the haem dept today to have a clear picture and be able to help you further should a Myeloproliferative neoplasms (MPN) be suspected - although it doesn’t always feel like it, this is a real positive as there is much assistance for these conditions to make life safe and to be able to move forward with your life in a protected way. So keep us posted how you get on. I am someone with a Myeloproliferative neoplasms (MPN) diagnosed in my mid40s 18 years ago - but I had had blood problems first when I was 18 and at various times after but nothing was ever picked up as it was different times for testing etc - so I am pleased when I see younger ones being tested and assisted efficiently in current times. All the best