JAK2 result in- but they won't tell me what it is!!

[Curlygal]

I phoned the surgery yesterday and apparently the result came in a week ago. However receptionist wouldn't tell me what it is because the GP hasn't reviewed it. This isn't really helping my anxiety!

I had a conversation with my partner last week where I said to him, if I phone up and they say, the doctor has to review it, that probably means it's positive because if it was negative, wouldn't they just tell me? I'm not sure of the wisdom of this thought now though, maybe the GP has to review absolutely everything before the receptionist can comment.

Anyway just wanted to have a little moan about it, thanks for reading! 🙂

[piggie50]

Hi curlygal,

Personally, I don’t think a receptionist should be giving you results but a week seems a long time for the Dr to review it. Are you able to speak to your heamatologists secretary? Regarding the result, jak2 positive would be a better result than negative. I think we all find waiting for results most frustrating. I know I’m very impatient!

Best wishes

Judy

[Curlygal in reply to piggie50]

Hi Judy,

I haven't been referred to haematology yet, the test was done via my GP. They are probably behind with everything because of the snow last week, I'm not sure if they were able to stay open then, the town basically ground to a halt as the roads were so bad (I live in central Scotland). My partner was off work too, he works in the shopping centre but it was closed (first time ever due to snow I think!)

Yes I am feeling rather impatient. In one sense a positive result would be good, it would at least explain why I have been feeling so terrible. Otherwise it may trundle on for ages.

[piggie50 in reply to Curlygal]

Excellent, I’m impressed! you have a GP who knows what a Jak2 gene is! Many of us have a GP who don’t know what a MPN is! My understanding is that if you have a MPN it is better to have a positive gene than a negative one.

I hope the snow is gradually subsiding. I’m in Devon and my city ground to a halt too but after rain for the last 2 days it’s all gone now.

I hope you get your results soon. X

[Curlygal in reply to piggie50]

Yes I never thought of that, actually having a GP who knows what I'm talking about! I originally saw a different GP (a trainee at the practice) who when I asked about polycythemia, said I definitely didn't have that because my white cells and platelets are not raised. I knew that was wrong so saw the other GP, who looked up the local haematology guidelines. I asked if PV could be ruled out before I see my immunologist on March 13th. They seem to be keen to weed out cases of secondary polycythemia as much as possible, to cut down referrals.

The snow is slowly melting here, but my son has a friend whose family were only reached by RAF search and rescue today, they've been cut off for nearly a week, out in the country.

[Dora1971 in reply to piggie50]

Hi Judy, why do you think it’s better to test positive to Jak2? I was diagnosed with ET 13 years ago but have only just been tested for Jak2 with I know is negative (consultants secretary told me when I called). I’ve been told he will explain more when he see’s me next week.

Any light you can shed on this is appreciated xxx

[piggie50 in reply to Dora1971]

Hi Dora1971,

I was told that a positive test just gives a difinitive diagnosis. I have PV and 95 % of PV patients test positive for one of the genes, jak2, calr or mpl. I don’t think it makes any difference to treatment. I’m sure your consultant will explain more.

Best wishes

Judy

[lizk1993]

Hi Curlygal, I know - it's frustrating. My GP ordered Jak2 test in March. I had to wait until I saw a heamatologist in June before I knew the result. Keep busy. I'm really sympathising with you today as I'm going to see a liver surgeon this afternoon. Been waiting since April last year to find out what's going on there, so I'm pretty nervous too.

Hope you get told soon. Take care.

Liz x

[Curlygal in reply to lizk1993]

It is frustrating but won't be long now. I hope your consultation went ok. I have some liver issues too and it is worrying, it's such a major organ.

[lizk1993 in reply to Curlygal]

Hi Curlygal, surgeon was really nice and reassuring. Tumours on liver are benign and don't require any treament. Great But, have polyp in gallbladder which might, so now referred for another US scan before he can decide. Ce la vie. Hopefully, you'll know your situation sooner. Take care. Liz

[Curlygal in reply to lizk1993]

Thankyou Liz. I have to have a yearly abdominal ultrasound to check my liver because the drug I'm on can cause liver tumours, none found so far but you certainly become aware of how big the liver is! It's huge! My LFTs have been slightly dodgy recently so another scan soon. Hope the gallbladder is ok.

[lizk1993 in reply to Curlygal]

Hopefully, your scan will be fine. Fingers crossed.

[Timjonze]

Sounds like an anxious time for you. Not sure if this applies to everyone but I was told that the nurse wouldn’t be able to give me any genetic test results over the phone - they could only let me know that they’d arrived and I should see one of the clinicians. So I wouldn’t read too much into it - GP probably needs to see them and be the person to explain them to you whatever they are. Good luck with it x

[Curlygal in reply to Timjonze]

I'm not sure what the protocol is at my practice but if there's an issue I can get the GP to phone me, which will be a lot quicker than trying to get a GP appointment! Yeah I'm trying to be sensible and not read too much into it, but you know how the mind ruminates on these things!

[Mazcd Partner MPNVoice]

Hello Curlygal, I can understand that you are feeling anxious about this, but it probably is just that everything is behind in the surgery because of the bad weather, a receptionist is not allowed to give you the result of any test until it has been seen by a doctor, even if it is negative, they can only give out a test result if it has been seen by the doctor and the doctor has said it is ok to either tell the patient or that the doctor only can give out the result. Best wishes, Maz

[Curlygal in reply to Mazcd]

Thanks Maz x

[Superwoman]

Hi Curlygal, I was told by my Haematologist that I had ET JAK2 Posative, My GP had requested the Full blood count test, and for a few months afterwards had to have it repeated, then and only then was I referred to a Haematologist where they did the JAK2 test was done waited a few weeks and came back posative, then was put on Hydroxycarbamide was already on Aspirin and the rest is history, I now attend hospital every four months.

You are lucky that you have a GP that understands what an MPN and JAK2 posative is, mine knew but unfortunately he is now retired so when I have to see a doctor now I have to explain what I have, in the end I got Maz to send me some booklets to give to the surgery think it has made a small difference, but I do not and will not let a receptionist try and tell me any results now as once one of them got it very wrong always speak with the Doctor, and if you are not happy ask to be referred to a Haematologist for peace of mind.

Anyway it is good to have a moan.

Jean

[Curlygal in reply to Superwoman]

It is good to have a moan lol! I know what you mean about doctors not understanding a rare condition because I have another genetic disorder. I usually have to explain it to doctors which after 25 years of having it (or being diagnosed I mean), is rather tiresome! In A&E they usually nip out into the corridor to Google it 😰

I think I am getting referred once the JAK2 result comes through.

[Superwoman]

That’s good that you will be referred, hopefully now things will get sorted. As for the other genetic disorder. Sounds as if you have coped well with it for a very long time, and the same can be said of any MPN you might have as we all do. My thoughts are that we are a very rare breed indeed and in a way we are all special. So maybe go armed with all the relevant information you can next time you visit A and E, and I am sure Maz will send you information once you know for sure.

I always carry in my bag a plastic card saying I have an MPN with all my details regarding my ET, and what drugs I take and a book that the hospital gave me with my four monthly blood readings just in case I ever have to attend A and E or have an a accident and it has served me well, even when I had to have a total knee replacement four years ago, they monitored my bloods all the time, and would write them in the book, so when I went back on my Hydroxy my Haematologist knew just how much to give me to bring the levels back to normal,

Jean

[Curlygal in reply to Superwoman]

That's a good idea. I know some people with my condition go in armed with a folder, I do have a letter from my consultant though for that purpose. I'd rather not have two rare conditions though, one is enough! 😀 Hopefully I can just stick at one.

[forwardocho]

Hello

A receptionist is not allowed to confirm results to patients unless pre-authorized by your GP. Your GP would have to review any results first prior to speaking with you. Can you arrange a consultation over the phone with your GP to discuss the results or were you allocated a Support Nurse when diagnosed? I ring my support nurse when I have my FBC's and am given all my results prior to my appointments with my Haemo. Maybe try calling your consultant's secretary explaining how you're feeling and could they give you an indication of when you might be hearing from them.

Try not to be anxious. It doesn't necessarily mean it's bad news, more the receptionist is not authorized to give out any results.

Angela

[Curlygal in reply to forwardocho]

Hi Angela, thanks I'm going to try ringing them again today. I haven't been referred to haematology yet, the consultant I currently see is my immunologist, for a condition called hereditary angioedema. I see her next week and am hoping she might be able to shed some light on what's going on, whatever the result is. It's possible that the medication I'm on for that has caused secondary polycythemia. Have to rule out PV though, I think.

[forwardocho]

I've just read the other comments and was interested to read that some consultants say having a Jak 2 positive gene is better than a Jak 2 negative one. I was told the complete opposite on diagnosis. I have ET Jak2 Neg and my CALR is triple neg. I was told that a "negative gene" is less likely to mutate into another MPN, ie PV or MF and that some consultants no longer carry out BMBs because any changes in the blood can be traced through DNA as well as FBC's. Thankfully, all my levels were normal.