Struggling to be patient during testing

[Bally8]

Hi everyone,

I’ve been reading through some of the forum posts and it’s been really helpful so far. I’m 33f and never had any health conditions before.

I’ve recently had blood work done where I was told my haemoglobin was abnormally high at 184 and I’ve now been referred to haemotology on urgent referral. I also got tested for the Jak2 mutation yesterday, after reading about times on this forum I’m just quite worried about how long it may take to know what is going on and to begin some sort of treatment. I’m assuming from the haemoglobin values and the Jak2 test that they think I have Polycythaemia vera (PV) but is there any other things that could cause this?

Can anyone give any advice on how long they think I might have to wait to hear and any advice on things that will help some of my symptoms - blurred vision, headaches and breathlessness?

Thanks

[MaggieLT]

Dear @Bally8 - welcome to our forum. I’m so pleased that you’ve found us. It is really hard to be patient when you are waiting on test results and don’t really know what to expect. I know from personal experience that your mind can go into overdrive.

Do you have a consultant or point of contact in haematology that you can speak to get some of the answers you are looking for? Alternatively, if you would like to talk anything through with one of our nurses over the phone or via email, you can get in touch on 0808 2080 888 or via support@bloodcancer.org.uk.

Take good care of yourself and let us know how you get on. Thinking of you.

Maggie

[Bally8]

Thanks Maggie,

I’ve been referred to haemotology and called the hospital yesterday to understand what the timelines might look like for my appointment and was told it was 17 weeks wait so I’m not feeling hopeful. I’ve since called my GP to ask to be referred to the other local healthboard as she had offered both to me. So hopefully I can get moved list and seen sooner.

I actually spoke with one of the nurses yesterday who was really helpful and gave me some reassurance.

I am not too scared for a diagnosis, I think it might be a relief to have answers and potentially solutions and a Polycythaemia vera (PV) diagnosis seems to be something that can be manageable. I am more concerned about the potentially long wait time for an appointment as my mind is already in overdrive and I’m worried the longer I wait that it will take longer to treat me.

Thanks for your reply

[Rammie18]

Hi @Bally8

I too have Polycythaemia vera (PV) and was diagnosed 5 years ago when I was 38. Can totally empathise with you in your thoughts and concerns.

it certainly sounds strange to say that once you overcome the shock that you have a type of cancer let alone knowing what the foreign sounding Polycythemia Vera even means can be very scary.

To answer your question, patience is a very big thing with Polycythaemia vera (PV). I think with 99% of the population when you hear cancer you want to get treated and seen straight away as you hear it everywhere that cancer is less damaging when you catch it early. However unlike other cancers, there is no tumour and/or lump to remove or attack.

not being a medical expert but the long wait maybe due to the waiting list of your trust or the availability of the best person to assess you. Knowing and chatting to a few on here that medical care and support varies a lot and having a good trusting medical team is paramount to how you see your condition. From my years of having the condition is that nothing moves or develops quickly. It’s all a very much slow process. A slow process to know if you’re getting better or worse, for treatment to work or not.. it’s about having consistent results and a steady pattern that having fluctuations and responding accordingly.

Personally if that is what your medical team have shown and you have trust in your specialist, your nurse and doctor than the long delay “may” be seen as that you’re in a good position to wait and access again over months rather than days or weeks to best assess the next move and not be rushing into a direction that may make things worse.

I’ve been on virtually every type of treatment for Polycythaemia vera (PV) and I’m still living life as normal and have a full time stressful job. I still do all the things that I enjoy and make me happy. It’s very easy for me to appear “normal” and “healthy”.

I’m more than happy to share my experiences or answer any questions you have. Always easier to deal and manage things when you aren’t alone.

[Bally8]

Hi @Rammie18

Thank you so much for your reply.

Yes I am trying to be patient, I’m eager to know what’s going on but I guess I am lucky to be in the process now for reaching a diagnosis.

I am not sure how long it will be for Jak2 results, I’ve read online the quickest would be 2 weeks so I’m not expecting anything until the end of the month. I’ve also asked my GP to refer me to the other healthboard in my area instead as we live on the boundary and it seems the other might get my an appointment with haemotology faster. However, I appreciate your perspective and I guess things are happening slowly and that’s also okay.

It’s also really reassuring to know you’re living a normal life with a full time stressful job! I’ve recently accepted a promotion in work to start soon and it has been really dwelling on me whether I should withdraw my acceptance of the role if things are going to be difficult to manage but hopefully it will be ok.

[Rammie18]

I would definitely take the promotion and use it as something to focus on while you wait for further insight in your condition.

I always say it’s easily to live with mistakes than with regrets. If you withdrew and everything is fine, it’ll be something you regret not pursuing. What you are doing now is easier to find and do again than a promoted post should your circumstances change!

[Duncan]

Hello there @Bally8, welcome to the forum. Can’t the waiting for results feel horrible?! Having experienced testing and waiting a couple of years ago, which ended up diagnosing me with Polycythaemia vera (PV), I can empathise. Let’s just hope you don’t get diagnosed with it, right?!

My own testing was sort of in reverse, in that I was tested first for the JAK2 gene mutation and forgot about it and then was shocked when it came back positive, which led me to have a bone marrow biopsy and aspiration (BMB), and this diagnosed me with Polycythaemia vera (PV).

Thankfully I found Blood Cancer UK and joined the forum, where I was greeted by dear @Rammie18 and his pearls of wisdom. I see dear @MaggieLT shared great advice too as the Blood Cancer UK specialist nurses are really great. You may find MPNVoice helpful too as you’ll likely note that Polycythaemia vera (PV) is very closely related to Essential thrombocythemia (ET) and other Myeloproliferative neoplasms (MPN).

I just wanted offer some words of support that until you are diagnosed with a blood cancer, please don’t assume you have one. After a couple of years of following my monthly blood test results I realise that all sorts of non-blood cancer health stuff can affect our individual readings, including some infections.

It was actually a nasty kidney infection that alerted my doctor of my blood cells being all over the place. I was lucky not to have had any symptoms of Polycythaemia vera (PV). Many people around the forum say they ended up being diagnosed after terrifying clotting events (our main risk with Polycythaemia vera (PV)), which it sounds like you’ve thankfully avoided. Perhaps try to tell yourself that as you’re in the middle of a Schrödinger’s cat testing scenario you may as well believe you don’t have Polycythaemia vera (PV).

Unlike you I went from testing positive for the JAK2 mutation to having a BMB to being diagnosed with Polycythaemia vera (PV) very quickly, in about a month, and it was like emotional whiplash. In retrospect I needed more time to get my head around each stage of testing, let alone the overall diagnosis. Perhaps, if I could have offered myself advice prior to diagnosis, it would be to express my anxiety better, exercise it out of my system a bit more, and don’t read random search results from Dr Google.

Almost without fail anything I googled about any of the testing was wrong and based on old research or for much older folks. Those of us considered young can lead and live mostly normal lives like Rammie says. My haematologist reminds me that I am much more likely to die with Polycythaemia vera (PV), rather than from it.

So my overall advice would be to find a healthy distraction as there is likely to be lots of waiting for the various test results. I went hiking a lot and got back into favourite old films and TV. Others around the forum throw themselves into family stuff, projects at home. My dad was tested for JAK2 after me and his GP faffed about for so long sharing his result from a university hospital that my dad had to go via PALS to chivvy them along with revealing it (thankfully negative).

I’m sure that’s enough to be thinking about. I really feel for you @Bally8, but if it does turn out to be a diagnosis of Polycythaemia vera (PV) or similar you will find many survivors right here to support you and share tips and so on. For now though I’d say try to believe you won’t need us here! Do please let us know how you get on.

[Bally8]

I just thought I would update to say I got my appointment letter through for the haematologist and it is in 2 weeks so I am so relieved to not have much longer to wait.

It’s also now been 2 weeks since my Jak2 blood test so I am hoping that results of that are in before my appointment. Does anyone know how long they waited for results? Google estimates are 2-4 weeks so I hope mine comes back soon.

Still feeling a bit unwell, nothing major but definitely something is going on so hopefully I will start to get some answers soon.

[Erica]

Hi @Bally8 I am glad that you have your appointment letter and not much longer to wait.

As for Jak2 blood test results perhaps there is not a set time for results and of course there are so many variables and we are in the middle of the holiday season.

You say that you are feeling a bit unwell, perhaps it might help to write down as specifically as you can what that is like for your medical team, along with your fears, questions and practicalities. Then you can feel organised for your appointment.

I always say be pleasantly assertive. Really look after yourself and please do let us know how you get on.