Being referred for a jak-2 testing

[Alex217]

Hey so I stumbled upon the forum shortly after my GP speaking to a haematologist regarding my raised platelets.

At first they thought it was anaemia which was causing the raised platelets we treated that yet my platelets continue to be high and raising.

I got an appointment through for Jak-2 testing alongside some haemophiliac testing due to my symptoms. These being excessive/easy bruising, fatigue, light headedness, headaches, nose bleeds etc. this appointment is in 2 weeks.

I wrote this is I’m sort of loosing my mind with the what ifs, I know no matter the diagnosis I haven’t done anything, or can change anything.

I’m only 22 and well I’m just worried

[Erica]

Hi @Alex217 I am so glad that you have found us so quickly.
Personally, I am not a medical person, but from what you say your GP seems to be doing tests to rule conditions in or out at the moment because the symptoms you describe could be so many conditions.
This of course does not stop your natural anxiety and I certainly felt that I had my life mapped out in front of me and then my thoughts and emotions suddenly started on the ‘what if’s’.
Perhaps do tell tell everyone medical you see how anxious you are, I found that did help me.
Medical tests were a whole new world to me that spoke a different language and certainly did not help my anxiety.
Have you any support?
I write any fears, questions and practicalities down before consolations so I cover everything I want to say.
We are here for you and so is the Blood Cancer UK support line on 0808 2080 888.
Be very kind to yourself, look after yourself and please do keep posting and perhaps try not to google.

[Jilly20]

Hello @Alex217 - glad you have found this forum - we all understand that situation of tests being done and the wait for results and all the what ifs - how you feel is very normal - you obviously have a good GP who is going through very logical tests to check things as yes anaemia can cause higher platelets and some treatment for it is the first port of call - now that’s eliminated it’s really good the GP is checking for Jak2 - do be reassured the GP is looking after you thoroughly and should the results be positive it’s a very treatable condition and you will get good input and assistance to look after you and enable you to live your life well - I have one of the high platelets conditions (Essential thrombocythemia (ET)) and it’s really helpful these days that they are tested for and found whilst you are younger as you then get someone to keep an eye on you over the years whilst you get on with life - do keep us posted how you get on and the results you get in due course

[Nichola75]

Hi @Alex217.
I can see that you have already been given great responses with good advice.
The most important thing about this forum is it gives you a space to see how it really is for you.
It’s only natural to go to the ‘what ifs’, it’s definitely what happened when I was diagnosed with lymphoma.
The most important this is to write down all of this questions and take somebody to the appointment with you if you can for support.
Please keep posting and letting us know how you are doing.

[Duncan]

Hello @Alex217, welcome to the forum. I’m so glad you found it, it’s been invaluable for me since my own diagnosis with the JAK2 gene mutation last year. I hope it comes to be as supportive for you.

I’m so sorry to read of those symptoms you’ve been experiencing, they sound difficult and worrisome. It’s great that you sought medical advice and now you’ll be checked to make sure of what it might be.

Perhaps you’ve been googling JAK2 and have seen references to what it might indicate. I’d say, from my non-medical point of view, try not to read into anything just yet. It’s an understandably anxious time awaiting these sorts of test results, but be wary of social media and outdated research at the end of a quick search. If you want to read about JAK2 try to stick to official blood cancer organisations like this one, I reckon.

However, you’re still in an anxious waiting stage and all I can suggest is to find ways that help you get the worry out of your system rather than turning it in on yourself.

Like you so wisely say, this isn’t anything you’ve chosen and yet you have to live with the uncertainty. In between my own JAK2 test and further haematological testing I found keeping active helped, if only to tire me out enough to sleep a bit more easily.

Maybe take time now to write down all that you’re thinking, all the spiralling worries, the what-ifs and so on. These can be helpful to ask your haematologist who should be able to allay your concerns and describe what testing is looking for.

Don’t be shy about asking for clarity if (more likely when) medical jargon is used that needs explaining. Maybe take a loved one along to appointments to help take notes as there’ll be lots of language used that 2 of you can catch better.

Thinking of you @Alex217, please do let us know how you get on.

[Alex217]

Thank you for the message! I had my appointment today with the heamatologist and we went through my symptoms/PMH/family history etc.

She believes that I’m showing the signs for Essential thrombocythemia (ET) (with no other obvious cause for them) , I have had my JAK-2 testing done today now a 4-6 week wait. And she is arranging an ultrasound of my abdomen to look at my spleen better.

Then I will have a follow up with her in 6 weeks. She said if it is negative she will keep me under her and monitor my platelets if they go higher she will treat me with the chemo if they don’t then I will be started with aspirin. If it is positive we will go straight on to the chemo.

And on that appointment she will give me booklets, contact numbers etc and talk through everything further

Edit- it was a lot to take in and sadly I couldn’t have anyone with me as partners working and I live hundreds of miles from my parents .however the doctor was lovely I’m a nurse who’s currently started to specialise in haematology aswell so it gave me a bit of an advantage. On both upside and downside my dr also works on my unit

[Alex217]

Yes my GP is amazing she was the only one to action this. My haematologist was slightly surprised that I had been dealing with this for four years with no improvement

Thank you for the message! I had my appointment today with the heamatologist and we went through my symptoms/PMH/family history etc.

She believes that I’m showing the signs for Essential thrombocythemia (ET) (with no other obvious cause for them) , I have had my JAK-2 testing done today now a 4-6 week wait. And she is arranging an ultrasound of my abdomen to look at my spleen better.

Then I will have a follow up with her in 6 weeks. She said if it is negative she will keep me under her and monitor my platelets if they go higher she will treat me with the chemo if they don’t then I will be started with aspirin. If it is positive we will go straight on to the chemo.

[Alex217]

I have support however majority live away from me so it’s a little harder and I’m at a point of hesitation with truly letting them know everything to not panic them it can be hard keeping it “to myself” but it causes less stress for them until we truly know what the diagnosis and predicament I’m in

[Duncan]

Oh @Alex217 you’re more than welcome. I’m just sorry that you needed to find the forum at all. But now you’re here and it sounds like you’re getting closer to a diagnosis.

I found once I had my diagnosis of Polycythaemia vera (PV) (very closely related to Essential thrombocythemia (ET), should you be diagnosed with that), I was better able to read about what I’d be living with and it helped reduce my anxiety. Perhaps, once you’ve got a diagnosis one way or another, it might help you too. Better to know than wonder anxiously I find.

You’re going through the same process of diagnosis that I did with the JAK2 gene mutation test and spleen ultrasound. Apparently our spleens can sometimes start to produce blood too, hence why we’re checked to see if it’s enlarged.

But how uncanny that your haematologist is a colleague! I wonder if that’ll be a benefit over time? I’m sure your haematology nursing expertise will help you understand the medical terminology and treatments. I’d say, as a fellow healthcare professional, when you’re in patient mode try not to put on a brave face. Let yourself be cared for and maybe compartmentalise your nurse and patient sides. It’s taking me time to let my other half care for me when I’m so used to doing that for others!

Keep us posted about how you get on in between tests and results and please @Alex217 never feel like you should be managing better because you work in healthcare. Let it all out here and you’ll find others will have a lovely word of advice for you.

[Erica]

Well @Alex217 it sounds as if you took in a lot of information today and that you are safe hands, but it also sounds as if it must be weird for you being a nurse and also specialising in haematology and knowing some peers.
As for telling your parents there is no right or wrong way or time, you know your relationship.
It must be so hard and isolating keeping it to yourself, we are here to support you and so is the Blood Cancer UK support line on 0808 2080 888.
Look after and be very kind to yourself and please do keep posting

[Nichola75]

Hi @Alex217.
What a day with lots of information to take in. It must be helpful having some additional knowledge but feel strange to be on the other side. It must feel very different as a patient.
There is no right or wrong time to tell family and friends. It has to be when you are ready. It may help to have the support though once you know more.
It sounds like your medical team are great which makes such a difference.
Please keep us updated on how you are doing and keep posting. We are all here to support you X

[Alex217]

Yeah I’ve had to learn to let myself be a patient and to feel the emotions I’m feeling which is a complete shock and change to who I am normally.

I have my US date it came a lot quicker than we was both expecting only waiting a week for it.

With being in HC how did you manage this and work? Especially in this stage I’m getting a lot of appointments without time to arrange my shifts around. I feel I am pressuring my team by having them so “last minute”. I finally felt sort of ready enough to tell my manager what I’m dealing with today I had wrote an email explaining what I’m going through/ where we are at and I won’t lie I cried a lot whilst doing so I felt I wasn’t ready to accept what it could be, it felt like everything around me is changing and there’s nothing I can do to slow it down.

The change of accepting to be cared for I still find quite hard and opening up being vulnerable about how I’m truly feeling.

And hopefully being in the same department would help. She mentioned that if it was to be positive then I would be contacting them which I find quite funny that I work with them

[Alex217]

Yes this time it felt completely weird and I felt more of a patient this time rather than a nurse.

I managed to tell my mum a little more information but not all/full detail it felt good to tell someone else, but I felt somewhat of a burden putting this onto her aswell.

Thank you the support here really makes a lot of difference to have this safe space where people understand it more and can help me x

[Duncan]

Oh @Alex217, so lovely to hear back from you.

I really empathise with much of what you’ve shared. I’m not surprised that putting into words what you’re experiencing brought on that crying—these sorts of diagnoses are a big deal, let it out! If I may be so bold, I can see why you got into healthcare because even in your own moment of need you’re thinking of others first!

I’m likely a bit older than you and have been through the emotional mill a few times in healthcare jobs during previous health issues/crises. With hindsight I would have taken more time to get my head around having and surviving a heart attack. I’d have pushed to be referred to therapy after that, rather than accepting a less experienced counsellor telling me I must surely know how to deal with my trauma alone as a psychotherapist. I’d also have asked the cardiologist who saved my life to do further testing as maybe they could have picked up on my Polycythaemia vera (PV) back then as my heart attack was caused by a clot, which is such a major symptom of these Myeloproliferative neoplasms (MPN) as I’m sure you know.

Alas, I pushed through my needs and self-care because, frankly, I was conditioned into displaying that whole stiff upper lip stuff that Brits can’t seem to move beyond. Now I spill out all over the place and am better for it. Better out than in, as my mum would say!

This time though, with Polycythaemia vera (PV), I did what I recommend others to do if they can and took time off for myself. It’s been so difficult after a lifetime of working stupidly long hours! I’d not be able to sustain my former caseload with my current energy levels, and I’d hate to not be fully present for my clients. I’m also privileged to have a partner who can support us both for now while I figure out my new normal and the edges of what I can manage and what might change. Accepting my Polycythaemia vera (PV) diagnosis is taking time but perhaps with time you’ll also have days where you forget about your diagnosis too.

Letting myself sit with the diagnoses of a JAK2 gene mutation and then the Polycythaemia vera (PV) itself has been a big lesson in self-care. Learning to trust my needs and energy levels better has been tough. When it comes to how my body is dealing with side effects of treatments and my emotional responses to an incurable blood cancer, it’s taking time to change my habits. Resting when an activity has fatigued me and then resuming later has become my new habit, and it works!

So I’d say, although I understand how you might feel like you’re letting your team down, and your patients, you need to put yourself first now. If we can’t function in our home lives then we likely take that into work anyway, which I bet is not something you’d want for your patients. Working in an environment around other caring people is a great place for you to be able to take a step back for now while you figure your own stuff out—your colleagues should know how important resting and decreasing stress is for a blood cancer survivor (if that’s what ends up being diagnosed).

Maybe think of it as an investment in yourself. I’m trying to trick my psyche into seeing this time recuperating from the shock and life changes of diagnosis as a new start of healthier boundaries and asserting my needs—sometimes to myself! After all, we can be our own worst critics.

Something else that helps me is to ask myself how I would support someone going through what I’m experiencing. How would I care for them? Then I try to do that for myself.

Not that I’m suggesting you ask for special treatment from your own team, but perhaps because you work in the same department as where you’re having treatment you could see if there’s a way to fit your appointments in around your shifts? Maybe on blood test days you could see if the phlebotomists can fit you in after your shift? I often need time after phlebotomy to myself as I find it rather invasive and emotional, aside from physical side effects of having a pint of blood removed. If blood tests aren’t a big deal for you then perhaps have them prior to a shift?

Anyway, I’ve gone on again! Keep letting those feelings out @Alex217, it’s an emotional time being diagnosed with a chronic illness. I imagine you might hold a lot of feelings for others, so now is your chance to share your own so they don’t burden you as much right now. Practice makes perfect and all that!

[Erica]

oh @Alex217 I reckon you are doing brilliant and being a patient and that experience will be so valuable in your career in the future.
I really had a tear in my eye , I think it took me a long while to accept my diagnosis.
Before my diagnosis I never shed a tear now I can cry when I least expect it.
I have often heard the words ‘roller coaster’ and I think that it what you are describing when you say ‘like everything around me is changing and there’s nothing I can do to slow it down’.
It must be so, so hard being the carer to being cared for.
If you felt like some talking therapy, it helped me, Macmillan Cancer Care or equivalent services, might be able to help and distance it a bit from your medical team or Doctor.
The Blood Cancer UK support line in the UK is there for you on 0808 2080 888.
Be ever so kind to yourself, look after yourself and please do keep posting.

[Alex217]

Thank you Duncan, this has helped a lot more than I thought it would.

I feel that especially being a patient whilst working in HC it’s expected that we should know how to cope with diagnosis and life changing so it can affect the care we receive especially whilst adapting to diagnosis or prognosis and it’s really sad.

But as you said if I was talking to a patient I would’ve been so much more caring about it getting them to have the time off needed, learning ways to cope, letting them cry on my shoulder, sign posting to relevant people, websites etc.

Definitely I was brought up the same way not showing emotion etc and it’s hard to change but as we all know this change is needed and for the better. I will say tho currently the smallest and silliest of things set me off . Like I got my first oncology letter for my US and it set me off crying seeing it written down.

Yes I’m in a similar position currently my partner can mostly afford to keep us afloat if it came to getting that diagnosis and reducing my hours/changing my role. It is scary tho as I already have another chronic condition which I ignored and ultimately lead it to get worse.

Luckily the department I work in is amazing and extremely understanding and has the knowledge that any haematology/oncology diagnosis can affect the body horribly. They are amazing and as you said they’d want me to take care of myself and to be 100% for them and for my patients.

The asking yourself what you would do for a patient really hit hard as I know I am not treating myself the same as I would a patient which is really upsetting to be honest. I treat my patients a lot better than I treat myself

Yes i definitely will do so far my manager has been amazing changing/adapting my shifts for my appointments I cannot fault her one bit. And definitely the appointments can really take it out of you I agree.

I’m hoping to have a meeting with my manager to explain in a wee but more detail what I was told/ what we’re looking at, so she and myself are more understanding of the toll it could take and potentially look at decreasing my hours a little bit as with everything going on I feel like I’m giving more than I’m currently able to. And as a colleague of mine said you can’t pour from an empty cup.

Thank you even if you thought you went on with yourself i felt I needed to read this it has helped me a lot. Knowing I’m not the only person who’s had this struggle to adapt and having to seek ways to allow myself to do so. It helps a lot being able to have this safe space to share as you say it’s taking some of the burden of myself and for that all I can say is thank you so much

[Alex217]

Definitely I agree it’s a crappy way to get the experience but it gives me that extra advantage of truly knowing how life changing these diagnosis can be and to be able to actually put myself in their shoes without guessing or going off what your told they’ll feel etc.

I am the same I was brought up not to show emotion so this is a challenge as the smallest of things make me want to cry now

It definitely is a rollercoaster and I’m only in the testing phase at the moment. Some days as someone said i forget about it and other days it’s all I can focus on.

I think I will go forward with some form of counselling as this is a lot for anyone to take it.

Thank you for the support

[Duncan]

Dear @Alex217, it’s my pleasure to have shared anything that helped even in the slightest. I’m really heartened that you’re already thinking about prioritising your needs in amongst the needs of who you care for and work with. Time for you

I’d say, try not to add pressure to yourself to deal with it all perfectly. There’ll likely be messy, upset days ahead and perhaps a lot of preoccupation with doomy end of life stuff. But then sleeping will hopefully interrupt that and another day comes along and it can feel okay again. Hard to believe but I never thought I’d feel okayish a year after the diagnosis I got. I hope whatever happens with your eventual diagnosis will come to be mostly just noise in the background.

In the meantime, as you know, there’ll be space in between appointments, testing and awaiting results. I kept finding I’d be sort of dazed and time passed a bit like dissociation at first, but once I started expressing it in writing and hiking my anger out of my system I felt more connected to myself again and could face the science and reality behind it all. Talking in personal therapy was helpful, but funnily enough it’s been couples therapy that has helped more as I’m not alone with this and sharing stuff there helps me feel more contained (in the psychotherapeutic sense).

Perhaps your science background and expertise in haematology can help reassure you now, and be an advantage like dear @Erica suggests? Knowing where to find meta-analyses of research, or being able to speak with peers directly using your knowledge might be reassuring? Or maybe it’ll make it feel worse because you understand the potential side effects! Even so, I’d say lean on your loved ones and trusted colleagues now and talk it through if that feels helpful. The cold hard logic of science can sometimes be comforting when the unknowns feel too massive, I find.

Oh look I’ve gone on again! Feeling protective of you even though I don’t know you @Alex217, hopefully it’s not creepy Please keep us posted about how you get on, I’ll try to be succinct in future!

[Alex217]

HonI stay this has helped more than I ever thought it could

Sleeping currently as you say is my one escape at the moment, however it’s the drifting off to sleep I’m currently troubled with. When the lights are off everyone is asleep my mind drifts away and thinks about everything more than I want it to I honestly wish I could just turn it off and sleep. I’m awaiting the day it becomes my norm if that is to happen in future days.

Yes we haven’t spoken about the potential future for monitoring just that they will keep me under them to be monitored. I guess that’s a question I need to write down to explore how frequent/infrequent the appointments tests etc will be/could be. I think I’m ready to try talking therapy even if this is not the diagnosis I end with as it’s a lot of stress and takes a toll on your body a lot more than I envisioned.

Yes it definitely has helped with what articles to trust and which to ignore etc. but as you said sometimes I find the truth and knowledge is a burden and at times I wish I didn’t have the knowledge/ background of it. The unknown can be scary but so can the known.

No please carry on. It’s honestly full of helpful information and it helps take some burden off me and I promise it’s not creepy! I prefer this than it being like I’m talking to a computer or a therapist

I will definitely keep yall updated I have my us coming up then an appointment in several weeks to discuss the results. Again thank you so much

[Erica]

Oh @Alex217 the night time is the worst, everyone else goes to sleep and my brain wakes up like a washing machine springing into action.
There are lots of techniques and handy hints out there to aid sleep and for me I now find it easier to stop the ‘what if’s’ etc. etc. I try and put them in an imaginary filing cabinet or perhaps there is something in counting sheep.
The haematologist has referred me back to my GP for routine monitoring with the proviso of a fast track back if anything seems amiss.
Firstly I felt abandoned, not cared about, scared, a fraud etc. etc.
Then I thought about it my GP is just down the road, I have complete faith in him and I would also pick up if my blood tests really change or I get other symptoms.
Perhaps your GP has suggestions about your sleep.
If I do not sleep then I cannot function and my thinking gets distorted
Talking therapy did help me.
Please do keep posting and letting us know how you are getting on.