I am being investigated for high platelets as a routine blood test for other matters has inidcated they are high and have been for for 3 years (463-480).
I had my jak 2 blood test 5 weeks ago as advised, after speaking to my consultant yesterday I was told the results have not been recieved yet. How long on average have people waited for their results? I know i should be patient but we are going on holiday soon and would like to know an answer soon my minds running away with me after too much googling!.
I have been suffering with chronic fatigue for a long time now headaches and generally feeling unwell. My iron levels are normal and thyroid is all ok.
Sorry this must sound so trivial compared to what others are going through right now with diagnosis x
Nothing is trivial when it comes to blood cancer or any investigation. It is an extremely worrying time for you waiting for results of tests. Anxiety is one of my constant companions since before my diagnosis and thereafter. The mind numbing fatigue doesn’t help either. Try ringing your consultants secretary she might be able to give you some idea of the wait time. Or even the haematology department.
I hope you have a lovely holiday and are able to enjoy it to the full extent. Best wishes, Marylin
Dear @Cassiew121
It is understandable that you are keen to know the results of your JAK2 test
Are you under a Haematology team and did your Consultant give any indication when they would be able to let you know?
The issue can be that specialist labs called Haematological Malignancy Diagnostics (SIHMDS) are used to undertake these tests and if they are not within your Hospital that can delay the results.
It is certainly not trivial and the waiting is challenging. Do you have another appointment prior to your holiday? Perhaps that may be worth requesting if possible and it is important for you to know the outcome.
Do call us if you need further support: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
Hi @Cassiew121 a great big welcome and @Marylin and @GemmaBloodCancerUK have already answered your question as well as we can.
I was diagnosed by a gynaecologist through blood tests.
Personally I find waiting for tests, results and appointments so anxious making and never ending.
I think it is always worth ringing up to ask about results just in case they have arrived, but you have not been told about them yet.
I do not think many of us are patient patients !!!
Nothing is trivial on our forum.
Have a brilliant holiday and really look after and be kind to yourself.
Please let us know how you get on.
Nothing is trivial regarding blood cancers or any other kind of cancer - everyone has their own level of anxiety - i was diagnosed with Jak2 over 9yrs ago - i had recently had bowel cancer so was being monitored for that when ET was discovered - my platletts were very high dangerously so yet i had had no symptoms and had been on holiday involving flights - my platelets are now down to an acceptable level but not as low as they’d like - ive been on oral chemo for all those years apart from a short period when i was switched to interferon injections (which made me very ill so they were stopped) and ive lead a pretty normal life all those years- do ring your heamotologist and ask if your results are back (mine were done at Addenbrokes) and if you’re flying ask their advice - if i do mid to long haul flights (ie 4 hours or more) i have to inject with heparin just to be on the safe side - i hope you get your results soon to put your mind at rest
Thank you everyone for your responses and kind words sorry its taken a while for an update i have finally got my results 11 weeks later after numerous chasing!
My jak2 and brca1 test has come back negative I have been dicharged from my hospital and referred to a different haematologist for a follow up with no real explanation as to what happens next.
Is it possibie to test negative with jak 2 and have a MPN? Has anyone had experience if this and what happens next?
Hi @Cassiew121 I cannot answer your question but I will copy your post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses.
I have another blood cancer and I really remember when my hospital discharged me back to my GP for active monitoring on watch and wait it brought up such a mixture of emotions, I ‘should’ have been pleased, but I felt rejected, abandoned, a fraud, should I be on the forum etc. etc.
In my experience (not a medical opinion) I am having at my GP’s regular blood tests and any other tests I might need and checking on symptoms and if my GP feels anything is amiss I will be fast tracked back to my hospital consultant.
The advantage is it is closer to home for me.
I await others experiences.
Look after yourselves and celebrate the good news.
Thank you Erica this is exactly how I feel I am over the moon that the results have come back negative but confused with what comes next and then I feel like I still dont have answers my fatigue can be unbareable at times and find it so hard to focus then I feel guilty as I havent had any sort of cancer or blood disease diagnosis!
Will have to be patient and wait it out and see what the next haematologist says guess its just going to have to be a case of investigating other reactive causes.
Its a comfort to know that there is support out there and to not feel so alone in this sending love and positivity to everyone on here xx
Thank you for sharing your update with us. It sounds as though it’s been quite a journey to get your results. May I ask how you’re doing?
I’m sorry to hear that you’ve been discharged without any explanation, and I can appreciate your need for clarity and to find out more information. I wondered whether you had a contact for the team, that you could reach out to to clarify? It might be that further tests could be suggested to establish the cause of your symptoms and results so far, but I wondered if you’d find it helpful to know more. Do you have a number for either a Clinical Nurse Specialist or haematology secretary that you could call?
Please don’t hesitate to reach out to us if you’d like to talk things over at all (0808 2080 888).
Hi @Cassiew121,
I am sorry to hear that you are in this confusing situation. You are no doubt very anxious and perhaps feeling lost and abandoned. I wonder if it would be worthwhile booking an appointment with your GP and talking through what has happened. There should be a discharge letter and a new referral letter. May be they could chase them up for you and find out why you have been discharged and referred to someone else.
Hello @Cassiew121. Thank you for sharing your story. I am so sorry to hear all you are going through with the waiting and uncertainty. I have an MPN - myelofibrosis which I have had for many years. When I was diagnosed these genetic tests weren’t available but in more recent times my blood has been tested for JAK2 which is negative. However I have been found to be positive for a different genetic fault CALR. I was told at one point that the CALR gene can indicate a better overall outcome for the disease but you had better not quote me on that one! Thinking of you. Warm wishes, Willow X