Hi new here just been told my bcr-abl jak2 can take 6 weeks any idea why
Hi. I think cost may be a factor here. I was told that the test for JAK2 would be sent to London and they like to test more than one case at a time due to the expense.
I could be way off and apologise if I’m wrong. I’m still waiting on my own result, which should have been back at my January appointment but I’m being seen next week so hopefully that’ll be clearer.
Good afternoon Karen,
Welcome to the Forum. Thank you for posting and asking a very valid question.
The testing for BCR-ABL is not done at every hospital. Usually it is sent away to a large hospital that has the staff and machinery to process the blood and interpret the results, as it is a very complex process. As @PollyVera has said, it can be due to cost too.
In case you are interested, this short video shows you the process of getting the BCR-ABL result: CytoCell haematology FISH protocol - YouTube it’s sometimes helps to accept the length of time it takes, when you see how specialist the process is.
Testing for BCR-ABL is a genetic test, and far more complex than a standard full blood count (which is done by a machine, usually in 20-30 mins). BCR-ABL testing is ordered to detect the Philadelphia (Ph) chromosome and BCR-ABL1 gene sequence. Several types of tests may be ordered to detect it, these include chromosome analysis, molecular genetic test, and/or fluorescence in situ hybridization (FISH). These help establish the initial diagnosis of CML or Ph-positive ALL.
Sadly, another factor at the moment may be staff shortages in the lab. Often the tests don’t take six weeks, but Consultants estimate this, in case it does take longer than usual and the patient panics thinking something is wrong, it is usually 2-4 weeks.
May I ask if you are waiting on the result for a diagnosis?
If you want to discuss any of this or need any support please do call our support line: 0808 2080 888
Kind regards, Heidi.
Hi @karencreasey thanks for having the courage to post, welcome, @Heidi_BloodCancerUK has answered your question.
Unfortunately, for us, having to wait is a horrible mixture of emotions and so is being out of control.
Since diagnosis I have found that it is a frequent occurrence in different situations.
Please keep posting as I look forward to hearing more about you.
Look after yourself and be kind to yourself.
My BCR ABL result comes back in about a week but the JAK2 definitely takes a lot longer. I usually receive a note on my records showing the expected result date. I have access through a Patient Knows Best website which shows all my blood tests so if you have access to something like that it may show when the result is due. I am not sure why it takes so long i am afraid but it always has. I assumed it was just something to do with how the test was done.
Hi @karencreasey and @Chrispy . My tests were done in June 2022 and it was October 2022 before I got my diagnosis of ET JAK2. I was told by my GP that it would take about a month for the test results, as they would be sent to another hospital, as our local one couldn’t do it. Four months was a long time to wait for the results, and because it took so long, I thought that everything was ok, so you can imagine the shock I got being told I had blood cancer.
Hi am new aswell i av ad my jak2 blood test dun an anither test cis my platelet count was 533 and the second count 528 the waiting is hard should i be worried pls help
Hi @Maria123 a great big welcome to our forum.
I think as soon as I entered the medical system the worst time is all the waiting, it’s anxiety making and seems never ending.
As for appointments for me it’s the not knowing what will be said. I could say to you ‘don’t worry’, but I bet you still will. you are human. I think consultants take into account far more than we know or they often might say in making a diagnosis and treatment plan, if needed…
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
The main thing is that you really look after yourself and be kind to yourself and keep posting.
Please let us know how you get on.
I will an thank you for replying am just scared
Hi @Maria123, it is just natural to be scared of waiting, the unknown and what will happen at your next appointment.
Just try and divert your mind and do nice things, I treat myself to a couple of Cadbury Heroes at the weekend and I am just listening to Pink Floyd, just for example.
Here is a link to Blood Cancer UK’s section on mind and emotions Blood cancer: mind and emotions | Blood Cancer UK
Be kind to yourself
A very warm welcome to our forum community- we’re so glad you felt able to join and post about how you’re feeling. It’s so normal to be feeling scared, especially whilst waiting for test results. This can be such a worrying time for so many, and you’re certainly not alone in this. Erica has given you some great suggestions and signposting, and as she mentioned, please don’t hesitate to reach out to our Support Team if you’d like to talk this through with someone (Blood cancer information and support by phone and email | Blood Cancer UK).
May I ask, Maria, whether you might be open to making an appointment with your GP to share how you’re feeling? They may be able to offer you some support and guidance in this time in-between.
Take good care of yourself, and remember we are all here for you.
I got a fone call this morning from a lovely lady ftom blood cancer support shes made me feel so much better so thankyou
Oh @Maria123 I am so glad that you got a phone call from the Blood Cancer UK support line and that she has made you feel so much better, aren’t we lucky to have them there.
You are never alone on our forum.
Please do phone them when you need a chat on 0808 2080 888.
I will copy your post so they know how you feel @BloodCancerUK
Be ever so kind to yourself
Hi @Maria123, thank you so much for sharing this with us. I’m so pleased to hear that the phone call helped. As Erica said, please don’t hesitate to reach out to us if we can do anything to support you further.
Hi again just like to say av been waiting 4 weeks now for my jak2 results the not knowing wot to expect is terrible any idea how much longer i will be waiting a in barnsley
So sorry to hear you’re still waiting, the uncertainty must be hard. Do feel free to give us a call on 0808 2080 888 if you want to talk things through. Have you chased the department who ran the tests?
Yes my gp chased am an he told me they gave h8m a timeline of 9th august another 2 week away yet thats a long time for me
Hi @Maria123 it must be a long time to wait for you.
Unfortunately the waits seem to be getting longer as there is the backlog still from Covid/sickness, bigger workloads, holidays, strikes etc .
I trust you get your results by 9 August.
Look after yourself and try and do nice things yourself to divert your mind.
Please keep posting and the Blood Cancer UK support line is there for you as @Alice_BloodCancerUK says
Hi again its been almost 6 weeks an my results not back wot can i do cos av not been very well wot can i do
Hi @Maria123 sorry to hear that you still have not had your results.
If you do not get them back by the 9th, perhaps you might contact whoever took the tests and see what they say.
Also tell them that you have not been well and your symptoms and their severity.
If you are still not satisfied you could, if it were your GP contact the practice manager, and if it were someone at the Hospital then the Hospitals PALS (Patient Advice and Liaison Service).
Look after and be very kind to yourself I find waiting and not knowing is very anxiety making