Feeling a little lonely at the minute waiting for a JAK2 test results - anyone have any experience of how long the test results take to come back?
I have thrombocytosis with a history of pulmonary embolism. I am on long term blood thinners as a result.
I have all of the symptoms of Polycythemia Vera, including the high platelets and hematocrit.
Is there anyone with a similar history? Or Polycythaemia vera (PV) diagnosis? I’m a little worried about the potential treatment since I’m at high risk of blood clots.
Sending lots of love to everyone living with blood cancer <3
Waiting for test results can be a lonely and worrying time and it is normal to feel this way. We are all here to help and support you and I am sure others will share their own experiences with you. If it would be helpful to talk things through, please do not hesitant to contact the support nurses on 0808 2080 888.
JAK2 results normally take between 3-4 weeks to come back. This however can vary depending on where you live as this test usually has to be sent to the bigger hospitals to be processed and the results interpreted.
Hello there @victoriaelizabethalice, welcome to the forum. I’m really sorry to read of your test result wait and worries, this has got to be one of the more difficult times when testing for stuff like Polycythaemia vera (PV).
I remember it well. Try to bide your time and not google too much as there’s a lot of generalised nonsense online. Stick to official websites like this one, I’d say.
Perhaps I could try to reassure you that you’re not alone should you have the JAK2 gene mutation or Polycythaemia vera (PV) as I tested positive for them both and am still here 2 years later.
Somehow I’m healthier than before diagnosis thanks to keeping active and well-nourished and having regular checkups and monthly blood tests. I feel very supported by my haematologist and other specialists I see.
If you look around the forum you’ll find many other members who live well with Polycythaemia vera (PV) and other related Myeloproliferative neoplasms (MPN). I would say for now dig into some distracting activities while you await those results. I watched so many films while I was in between tests and results, and hiked a lot.
Please do come back and let us know how you get on @victoriaelizabethalice, and if you have any questions or worries before your results don’t hesitate to ask anything that comes to mind.
Turns out my JAK2 test was never sent to the lab, I have now had an urgent referral to haematology with platelets at 633 (up from 515 in September, and has hovered around that for 2.5 years) at a repeat blood test yesterday. I had a very early call from my GP this morning who spoke with the on-call haem registrar and I was sent immediately for additional tests at hospital today.
No idea what to think, my GP has been extremely apologetic, she can’t understand how it didn’t reach the lab. My blood form was very clear in what it was asking for, but it never arrived.
I expect the referral was through the USC pathway so now I have to sit and wait for the haem appointment.
I hope this hasn’t happened to anyone else, but any advice on how long I’m likely to wait for a harm appointment? I suppose results dependant?
I also live with 2nd degree atrioventricular block. I had a PE in 2023 and suffer badly from migraines (which I think is linked to the high platelets?) I take Apixaban and candesartan daily so I have a lot going on
Hi there. Your post resonated with me a bit as I am in a similar-ish position at present. I had blood tests for the genetic mutations a week ago so I’m awaiting the results and was told it would be around 3 weeks. I did end up paying for a private haematologist as I’ve been on a waiting list for four months without any tests other than standard blood counts etc. So hopefully it’s positive now that the test has been sent and you won’t have to wait much longer to see a consultant and have a plan in place whatever the outcome.
What might be useful if you don’t already is to get access to your medical records. This was advised to me on another post as I was getting mixed messages from various GPs regarding my platelets which were increasing. I will see if I can link to the post but just getting used to this forum!
I also suffer with horrendous migraines so fully empathise. The haematologist I saw said they could be related to high platelets too so I’m hoping if I do get a diagnosis, bad as that might be, the treatment would help with that. Also on candersartan to prevent migraines/for high blood pressure, which has been increased this week due to blood pressure going up again (probably all the waiting for appointments!).
For anyone else struggling to get their data, here are some ways to access your results in the UK:
1. The NHS App (For GP Records)
Most people can see results automatically in the NHS App.
• If you can only see a summary (just meds/allergies), ask your GP receptionist for ‘Coded Access.’ This gives you the right to see the actual lab values and the doctor’s notes.
2. Hospital Results (Patients Know Best / MyChart)
Hospital tests (ordered by your Haematologist) don’t always show up on the GP app. Many UK trusts now use portals like ‘Patients Know Best’ (PKB) or ‘MyChart.’
• You can often link these directly to your NHS App under the ‘Your Health’ or ‘Health Data’ tabs.
• If your hospital isn’t on a portal, you can ask your Clinical Nurse Specialist (CNS) to email you a PDF of your ‘Full Blood Count’ (full blood count) trends.
3. Your Legal Right to Records
If you hit a brick wall, you have a legal right to your records via a Subject Access Request (SAR). You can email the Practice Manager (for GP) or the Hospital Trust’s Data Liaison and ask for your results from a specific date range. They must provide these for free, usually within 28 days.
Hi there, just to say I think it’s important people here know these digital options are not available in Scotland. We don’t have those digital routes and don’t have the NHS App for anything else to ‘bolt’ onto. I’m also not aware (happy to be corrected!) of Wales/Northern Ireland being able to either. It’s a source of significant inequalities in terms of access and it bothers me greatly. Just to be clear though that I’m glad for all patients who can access their info
Oh how frustrating @victoriaelizabethalice, and when you’re already eagerly anticipating the result. I’m sorry to read you have to wait even longer, but it’s great that you’re on that pathway now. Hopefully what Nurse @Fiona_BloodCancerUK said before still counts and it’ll be a few weeks until you get the result, but perhaps your GP could try to chivvy it along due to their delay? I’d be tempted to ask them and politely point out the long wait you’re having due to no fault of your own. As @Barry1 says, having the test done privately is also an option.
So sorry to read of all you’ve got going on, I’d say it’s time to batten down the hatches a little and take some time for yourself. Personally I find I need distracting activities when I’m awaiting test results, I’m sure you know what occupies you well.
If you would like to take things further regarding the delays, especially if they continue unreasonably, you can always contact NHS PALS that offer confidential advice, support and information on health-related matters. The nurses at BCUK are also on hand to offer support on 0808 2080 888.
Thank you for your responses, it’s nice to know there are people out there who understand!
@Barry1 thank you for sharing your experience, seems like we’re in a very similar situation. Hope you’re doing well. I know how frustrating it all is. I might look into private treatment if I don’t get any more traction.
I’ve got the JAK2 mutation (Therefore MPN (Myeloproliferative neoplasms)) and have high but not mega high monocytes which is the only obvious symptom I have in regular blood tests. I also have Myelodysplastic syndrome (MDS) with 4 other mutations but I don’t fall into any particular categorisation of Myelodysplastic syndrome (MDS) so it’s a puzzle. Spleen size normal and no obvious symptoms and no treatment. Just watch and wait with 3 monthly blood tests. 70 years old and I only got diagnosed after having blood tests for another reason.
Its a weird feeling being told I have an incurable cancer but having no treatment or symptoms and they’re unable to give me any idea on longevity or anything else.
So I’m just going to get on with life for now as though nothing has happened.
@Duncan thanks for this. It hasn’t started yet in Scotland. We are in Lanarkshire which is meant to be the pilot board but I’m aware it will only be operating within dermatology initially. As it stands, the first iteration is not for accessing any form of medical test/scan or any other results so will have rather limited use. I look forward to it evolving over time
The Welsh NHS app will not show you any test results generated by a hospital even though the GP can see results from tests ordered by the hospital and the Hospital can see results from GP tests.
It now also shows hospital appointments although not all and waiting list referrals.
Hello there @Jonpd, hope you’re well. Sounds a bit too early for the Welsh app to be relied upon yet—not great when already living with such uncertainties, I’d say. Hopefully more information will become available in time.
I wonder, is there a way to give feedback to those making the app? They may not realise how helpful it can be for people who have frequent tests to be able to check results ourselves, or to receive them as soon as our doctors do.
Hi @Duncan, I’m well thank you although fed up with the dismal weather. Hope you are well also.
I think the Welsh NHS app is a bit clunky and the best bit about it is the ability to request repeat prescriptions. I have never managed to book a GP appointment through it.
It does show GP test results and some health information but I had to request access as it is not automatic.
I have mentioned the lack of information on hospital tests to my consultant and he was going to mention this. I grind my teeth when I hear about what patients in England can see. Perhaps it is something that Blood Cancer can look at.
I will look into providing feedback to the Welsh NHS.
I’m glad you’re well @Jonpd, and believe me I can imagine how dismal the weather can be. It used to really affect my moods in winter until I started using daylight bulbs around my home—I’ve got a Finnish friend who doses up on daylight every morning from their tabletop lamp, like a healthy facial sunbed!
You know, my health insurance over here offers an app which is really helpful but can also be pretty clunky. Sometimes I find myself writing to their head office (“members services”) about the app’s failings, like when I’m emailed about an important form or letter and it isn’t accessible via the phone app. I had issues with my hydroxyurea prescription delivery for a while as it kept getting stopped by some algorithm
It’s bewildering that the nations outside England have such shonky healthcare apps! I’m sure your feedback would be very helpful to them, especially considering that you’ve stayed on top of such rare health concerns for so long. I’ll see if my dad might contact them too. Maybe we can effectively moan our ways into having better apps!
