Good evening, had a call that’s left me confused and worried. In December my GP sent me to haematology because she said my RBC was high - this was after a routine blood test. To be honest over the last six years it has always been ‘out of range’, but even before that I remember my previous GP telling me my blood was ‘stickier’ than they’d like but it was probably because I was dehydrated. So off I went and saw the haematologist. Bloods were taken and I was expecting a call back in February. She rang today and the way she spoke to me concerned me. She spoke very carefully and compassionately, she told me that my molecular test had come back positive, that my bone marrow was in overdrive and that I needed to see a specialist and have a bone marrow test. She started talking about finding out which neoplasm it was but to be quite honest my head was spinning and I don’t remember what she was talking about. She asked me if I had any questions and I asked her if this was something I needed to worry about - she just told me that the specialist would talk me through it all. Have to go on Friday to have blood taken away because it’s too thick. She said she will leave me a prescription for some medication I have to take and that’s all I remember. From my test results I can see that my platelets are up (have been for a while too), EPO is less than 1.5, hemaglobin and hemacrit are up too. Only symptom is that I’ve been exhausted but I have had a rough year - had surgery last year for an unrelated issue and it failed and assumed it was because of that. Feel like my head will explode because I was not expecting any of this at all. What does a positive molecular test even mean? As well as the rest of it
Emsih sorry to hear that you have been left confused and stressed. On Friday when you get your venesection make sure to ask for clarification and explanations. I have Polycythaemia vera (PV) , I was diagnosed just over a year ago. I cannot answer your questions , I don’t understand some of the numbers or terms. What was the prescription for? A tip make sure you drink plenty of water before your blood draw that will help. Hopefully you will get answers soon. Warm wishes. Liz59
Morning Liz and thank you so much. I can’t remember what the prescription was for, but I can’t take aspirin because I’m allergic to it and so she said this was an alternative. Not sure what the name was because my head was all over the place. I’ll let you know how Friday goes. Regarding the venesection, is this a one off or is it a regular thing? Many thanks again
Emsih At the start I had regular venesections but now have not needed one for a few months. It will depend on your numbers and how fast they come down. When I had my first venesection I was put on a drip like they do when you are dehydrated before they did the venesection. The nurses are really kind and willing to answer any questions. Hope Friday goes well. Warm wishes Liz59
Hi @Emsih I am glad that you have found our forum.
I do not think anyone that rings us unexpectedly realises the impact their call can make and the fact that we cannot take in the facts told to us, I am the same.
I was diagnosed 21 yrs ago and I am am often on here and I did not understand what she said to you.
You certainly have had a rough year, I reckon any surgery takes it toll emotionally, psychologically, medically, physically and practically and then to have it fail.
Perhaps see how Friday goes and see if you can get any of your questions answered, you might need to see a consultant.
This couple of days will give you the opportunity to write down all your fears, questions and practicalities so you can feel prepared.
My trick is to be pleasantly assertive and make sure you hey answers you can understand.
The Blood Cancer UK support line is there for you on 0808 2080 888
Please do let us know how you get on and the not knowing is a horrible time.
Be ever so kind and really look after to yourself
Hello there @Emsih, welcome to the forum. I can see why you’ve been left confused and worried by that haematologist’s call, it would have left me feeling similar I reckon!
I’m sorry to read that you were given some information but perhaps not enough for you to check what might be going on in your body. It’s great that you’re seeing a specialist and I’m so glad you found us here to check some of these medical terms.
From experience I’d say be really careful about googling any of the terms your haematologist mentioned as they might lead you to terrifyingly inaccurate prognoses and generalised information that doesn’t relate to you and your unique health.
Better to stick to official organisations that have done proper research for any facts, like Blood Cancer UK. I say this as I received a routine blood test result back in 2023 and it likely indicated I had an Myeloproliferative neoplasms (MPN) which later was clarified to be Polycythaemia vera (PV), like dear @Liz59. The wait in between getting that automated test result and seeing a specialist was incredibly anxious.
It’s a few days to wait for those results to be explained properly, so I’d say keep note of all the queries going around your head and list any odd and new physical symptoms to tell the haematologist, like the exhaustion. Remind them of your allergy to aspirin and the operation you had last year. I’d highly suggest taking a loved one with you on Friday to help keep note of all the medical jargon you’ll no doubt be told.
In the meantime I hope you find some ways to relieve the very understandable worries you have. Personally, getting out walking in nature helps me a lot, and other distracting activities can occupy our minds too, like watching favourite films and listening to music and so on. Do try to avoid searching online just yet until you know the finer details.
I’m not a doctor but, like @Liz59 says, if you’re having venesection AKA phlebotomy on Friday then try to drink as much water on Thursday as you can to help your blood drain more easily. I have occasional phlebotomy, about every 3 months or so, as part of my treatment for Polycythaemia vera (PV)—when my haematocrit level is above 45 % and my blood is too thick. I’ve read this percentage threshold for needing phlebotomy can sometimes be a bit lower for women. Phlebotomy is essentially the exact same process as donating blood, if you know that. As you’ve had surgery I imagine you can visualise having blood drawn and hopefully this will be easily tolerable for you.
Hope this helps a little to alleviate some of your understandable concerns @Emsih, this week will no doubt feel difficult so try to give yourself an easy time and not be too hard on yourself. Do please let us know how it goes, we’re here to support you.
Hey Liz, I bit the bullet today and called the haematology consultant and just asked her if it was Polycythaemia vera (PV)? All my blood work pointed to that. She said that it was and that the molecular test was the Jak2 and that it was positive (exon14 at 11%) - I don’t know what that bit means tho. She’s referred me to a specialist but probs won’t be until next month. I don’t know what’s next or which way to turn. Last year my partner was diagnosed with prostate cancer and now this
Thank you for your kind words. From the limited information I had and the results of my bloods, I knew it was Polycythaemia vera (PV) before I called the consultant today to ask her. I needed to know and she confirmed. I haven’t got a specialist appointment yet and it won’t be until February, which is rubbish. However I know how it is, because my partner was diagnosed with prostate cancer last year and there was lots of waiting in between appointments. Just lost at the moment but I’ll be okay
Thank you so much Erica, and thanks for sharing your story with me. As I have said to @Liz59 and @Duncan i rang and got some answers so I know what it is. Devastated and lost but will find my out of the dark before too long. Xxx
I am, glad that you have some answers @Emsih , you certainly have had a tough time with your husbands diagnosis as well.
Yes, appointments do seem to take time don’t they.
We are here to support you and the Blood Cancer UK support line is also there on 0808 2080 888 please do keep posting and take lots of care of yourselves
Oh @Emsih good for you for calling the consultant, bet that saved you some anxiety. But I’m so sorry it’s been confirmed as Polycythaemia vera (PV).
As you have already found, you’re not alone with this diagnosis and you’ll find many of us around the forum living with Polycythaemia vera (PV) and other related Myeloproliferative neoplasms (MPN) which tend to have overlapping symptoms and treatments.
I can well imagine that devastation you’re feeling and all I can say is feel it, express it whichever way feels helpful, and please know the forum is here for you and anything you want to share.
When you have the energy have a look around the forum for others living with Polycythaemia vera (PV) and I’m sure you’ll come to feel less alone with this.
Thinking of you @Emsih, please let us know how you get on. I hope the phlebotomy on Friday goes really well. You may well be able to ask your phlebotomists all sorts so take along your queries and maybe treat yourself afterwards—that’s one way I tolerate all this!
Emsih you now have a diagnosis so that’s a start. There are a few different treatments for Polycythaemia vera (PV) and if one doesn’t work or doesn’t agree with you , you can try a different treatment. The wait to see the specialist is hard. You have had a hard year with your partners cancer so be sure to take care of yourself, it’s hard when you are also a carer. You may not need treatment other than venesections and a blood thinner. This treatment option is watch and wait. Polycythaemia vera (PV) is an invisible cancer and to everyone you look well. Allow yourself the time to process this news, there is no right or wrong way. Warm wishes Liz59