hello all I'm a newbie just wanted to no how long you guys had to wait before you had your first appt with a haemoolgist ...
what's a typical waiting time ?
& what to expect at my 1st appt ?
how long will I be there for ?
what blood tests will they do?
will I have a bone biopsy ?
what questions wil they ask?
I'm very anxious any advise here will be much appreciated .
I'm guessing your gp suspects an mpn as a result of a blood test,in which case it will depend on how high your numbers are. In my case on the bottom of my blood test results it said figures highly suggestive of pvr recommended immediate referral to haematology. I was seen in 2 weeks. You will probably have a blood test to see if you have any gene mutation. Ask for a print out of your blood test each time so you can compare your progress. Prepare a list of things you want to ask and if possible take someone with you. Two heads are better than 1.
Had to wait 13 weeks for my first appointment. Blood tests were done a week or so before, including a JAK2 test, which in my case was positive. It was explained in detail what the diagnosis was (PRV), and what the implications were. The only physical examination was of my spleen. Four years (and much asprin, Hydroxycarbimide etc) later I am still working more or less as before, and enjoying a normal full life. I decided on diagnosis that I was not going to let the problem control my life unless it absolutely had to....
Good luck with your diagnosis, but remember that any MPN is not the end of the World.. In my case just a mild inconvenience.
hi Airconbob
I have a date for appt already so on reading your reply I understand they may send for me a wk before seeing the consultant for blood test etc ?
thanks for your quick reply
They may want blood tests (Particularly JAK2) before the consultation but if you have had tests done recently they might be current enough.
Specialist MPN clinics, such as at Guys Hospital in London, do your blood tests when you arrive at clinic and the results are ready in a short while. You are then seen by a doctor. A bone marrow biopsy may be done at some stage to assist with diagnosis and provide a baseline situation of the bone marrow. Please see the attached which indicates a 2 week wait to see a consultant.
londoncanceralliance.nhs.uk...
hi thanks for your reply .. I don't think the nhs will pay for me to visit a specialist Mpn Clinic ....cos I don't have private health cover I'm NHS patient in the midlands uk ...so been waiting 4 wks now still 6 more wks to go ..since doc referred me for suspected PV to local hospital haematology to test & confirm the docs suspicion .
I think I'm going to be waiting a good few wks to find out any results of other tests they may decide to do ...so the long agnosing wait of being in the situation of not knowing for sure if I have Pv or not lingers on (doing my head in )
thank you though for your reply
Just as a point of interest, you have the right to be seen at the hospital of your choice. Your doctor is obliged to refer you as you wish. For choices, this might be a good starting point: mpnforum.com/list-hem/
hi Osidge nice to here from you again ,
thanks for your useful advise I think I will wait to see if I'm jak2 pos & then if so I will ask doc about a referral to a Mpn specialist to ensure I get the best care ...you are very knowledgable thanks again X
thanks
I just noticed the link you provided so I've saved it on computer as well ..
I've also read it through its very informative thank you so much ..don't think nhs is capable of seeing me in the 2 wk urgent referral as in the link you sent me .. it's over worked and under staffed well that's what my Gp said when I asked her why my wait time was going to be 10 wks ..I will just have to be patient .pardon the pun LoL
Your wait time may be because it is, incorrectly, not being made as a cancer referral!!
Hi
From my gp realising my blood levels were wrong in Jan, i waited 3 months to see the hems team at my local hospital where i had a jak2 test which was negative. They referred me to the guys hems team in march and I have my 1st apt with them on monday! Still have no idea of whats wrong 9 months on. Hope for some answers on monday!
Wishing you good luck x
hi Vicky
Wow you have had a long wait thanks for your reply
please update me on Monday after your appt ...if you have the energy should imagin it's going to be quite a drain on you
would appreciate your advise when you feel up to it ..as will help with my up coming apt .
will be thinking of you on Monday !
take care Hun x
Thankyou. I will be glad to get there at last! I'll let you know what happens x
hi Vicky
how did you get on at your appt on Monday 16-sept -18 ?
Hi. Thankyou for asking.
My children and I had to have genetic blood tests done which take about 3 months to process. Then at the end of October I have to have a red cell mass test which I believe is done in the nuclear medicine dept with some type of radioactive ingredient put into your blood. Then i get all the results in January, a year from when all this started!. More waiting with no answers!
hi Vicky what a trial for all of you & such a long & worrying wait for those results to come back!!
did they do the jak2 test whilst you were their this time ?
I can not comprehend waiting 3 plus months for such important tests
my thoughts are with you & your family @ this very trying time ,
regards N-sky
Thankyou. The waiting is horrible. I had my jak2 test taken at my local hospital in march and they sent it to guys for testing. It was negative x
oh just thought of another question
how long did you have to wait for your jak2 test results to come back after your test ? I should imagin it feels like forever !
Mine took 8 weeks x
Haematology with pv interest 
Newly diagnosed with PV JAK2 positive 
