Good morning, I’m posting because I am in a state of turmoil. Last year I was told, after routine blood tests, that I had secondary polycythaemia that could be because of a lack of oxygen. I had an overnight sleep test and I didn’t have sleep apnoea. I received a letter from my local hospital asking me to make an appointment with haematology. There were no appointments available in the 15 week window and I was asked how best they could get in touch with me when one was available. I was not expecting an appointment so I went online to view my primary health record. I was shaken to read the letter of referral which said “suspected Polycythaemia Vera”. Nothing had ever been said to me. I phoned the hospital and asked if “suspected cancer” had such a long waiting list. My GP had not sent the letter marked “non urgent” and this was the explanation, the letter hadn’t been read!! I have seen the haematologist and had a JAK2 test 6 weeks ago, the results are not back yet. I am very worried and this is made worse by the fact my hair is rapidly falling out. My GP is abrupt and uncaring leaving me with nowhere to take my concerns. Has this been the experience of others?
Diane1 welcome to the forum. I have poycythemia vera. Your worries are understandable as it is stressfull waiting on results. I experienced hair thining but not it falling out. Someone who is more technical than me I am sure will put up links to information on Polycythaemia vera (PV). I hope you do not have to wait much longer for your results. There is a helpline you can ring who can answer any questions and give you support. Best wishes Liz59
Hi@Diane1,
Thank you for reaching out to us. It’s completely understandable to be feeling this way. The waiting is often the worst part and its important to look after yourself. Some specialised tests such as JAK2 take time to come back. I have enclosed some information that other users have found helpful from our website around your emotions and looking after yourself living well and emotions
I have also enclosed some of our information on polycythaemia vera (Polycythaemia vera (PV)) Blood Cancer UK PV information Blood Cancer UK for you to read.
Hopefully you have been given a follow up appointment to see your haematologist soon. Once they have all your results back, they will explain things in more detail.
We would be very happy to talk to you over the phone on 0808 2080 888. Alternativity, I know you will receive lots of support here on our forum.
Please keep in touch and let us know how you get on.
Best wishes
Fiona (support services nurse)
Hello there @Diane1, welcome to the forum. I’m so sorry to read of your diagnosis and associated turmoil and the hair loss. I can empathise with much of what you describe so well, having also been diagnosed with Polycythaemia vera (PV) last year.
Interesting that you were diagnosed last year and yet the JAK2 test was only recently done—JAK2 testing is usually done prior to diagnosis, from what I understand as a non-medical person. The majority of people diagnosed with Polycythaemia vera (PV) have the JAK2 gene mutation, so perhaps prepare yourself for the test result confirming that. There are also dozens of other far less common gene mutations related to MPNs like Polycythaemia vera (PV).
It’s great that you’re getting tested but I understand the waiting in between is likely to be anxious. Have you got loved ones you can share this difficult news with? Perhaps take time to write down how it feels for you and any questions that emerge as you can ask your specialists when you speak with them.
Many people around the forum talk of exercise and being outdoors as being helpful for getting some of the anxiety out of our systems. Personally I find hiking really helpful for finding peace and calm. Yoga has come to be useful as well when I’m too fatigued to get out and about.
If I may be so bold, I’d say you need a caring doctor on your side supporting you through this. Your GP sounds horrible! Is there a chance you could change to a more caring doctor? Not sure if you’d want support in liaising with your GP but have a look at PALS who can help in situations like yours: What is PALS (Patient Advice and Liaison Service)? - NHS
The lovely @BloodCancerUK_Nurses are a font of knowledge and really care so I bet they’d be able to support you with any questions you might have if you called them on 0808 2080 888.
I see @Fiona_BloodCancerUK has shared the great research from Blood Cancer UK about Polycythaemia vera (PV) which I think is really well written, so I’d recommend having a look when you have the space for it.
My first haematologist turned out to be uncaring and minimised the terrible fatigue I had after starting his treatment. After he forgot what he’d prescribed me and continued disregarding various symptoms I was experiencing I got referred to a lovely holistic and more recently trained haematologist. He told me that a lack of oxygen in the blood can indicate it’s getting crowded out by blood cells, which can worsen apnoea and other breathing issues, hence why I did a sleep study too. So I’d say it’s good you’ve been checked out for that, one less thing to worry about perhaps?
Thinking of you @Diane1, do please let us know how you get on. Have a look around the forum as you are not alone with this!
Hi @Diane1 a great big welcome to our forum and I cannot better the forum members that have already responded to you.
Feeling in a state of turmoil and the waiting and not having clarity must be so, so difficult and worrying for you.
Please do let us know how you get on and also please keep posting.
Thank you to everyone who has replied, I’m grateful.
Duncan, you said it was interesting that I was diagnosed last year and yet the Jak2 test has only been recently done. It has been a slow process and because of it, I had no sense of anything this serious looming. I was unprepared. My GP told me las year that blood tests showed I had secondary polycythaemia (I’ve since been told by the haematologist that as primary polycythaemia hadn’t been ruled out that this diagnosis shouldn’t have been given?), It took weeks for a sleep study to be given, more time for the analysis and more time for an appointment with one of the team. Then I had to use a cpap machine for three months before a review and a further sleep study . In that time I went from borderline severe sleep apnoa to normal. My own belief is that I never had it in the first place, So, time was wasted before being referred to a haematologist. The haematologist is an elderly lady working as a locum. I think she may have been brought in from retirement. I’ll hold judgement on her until the results are back and I see her again. The same with my GP.
I do have a married daughter and a husband - both of whom are hoping that Mum will deal with this as she does with everything else.
Thanks again everyone. I was so lucky to find you. Diane xxxx
Hi @Diane1 personally I do not think my son would want to think of me as being vulnerable either.
Yes, sometimes the diagnosis does take time.
Interesting. perhaps your ‘elderly lady’ will surprise you with the experience she has.
We await, please do keep posting and really look after yourself
You’re most welcome @Diane1, if any of my experiences of being diagnosed and living with Polycythaemia vera (PV) might make it easier for others like yourself then it’s my pleasure to share. I’m just really sorry you’re going through such a difficult time. Please reach out to trusted loved ones and share what you’re experiencing as it can help to lighten the worry, if my experiences are anything to go by. Don’t feel like a fraud—Polycythaemia vera (PV) is a rare and potentially risky blood cancer but can be lived with into old age.
You describe it so well, it really can be a slow process getting diagnosed from what I’ve read from other survivors here. After my own diagnosis my dad got tested for the JAK2 gene mutation too and it took months for his (thankfully negative) result to come back from the university hospital in South Wales his blood sample was sent to. He had to keep nagging his GP who wasn’t very helpful, unfortunately.
I gather that diagnosis really depends on both how much your GP is already aware of the potential severity of Myeloproliferative neoplasms (MPN) like Polycythaemia vera (PV), and also how close you live to a hospital with a decent haematology department. From what I’ve noted other Myeloproliferative neoplasms (MPN) survivors on the forum have shared, some GPs haven’t even heard of Myeloproliferative neoplasms (MPN), and a few haematologists can minimise the potential severity of Myeloproliferative neoplasms (MPN) and their side effects.
My first haematologist, for example, kept incorrectly telling me Polycythaemia vera (PV) wasn’t a blood cancer, and that the hydroxyurea he prescribed me wasn’t chemotherapy, and so after some more unforced errors on his part I was fortunate to get referred to a more caring, recently trained haematologist who knows what he’s doing, thank goodness!
If I may be so bold, a lot about tolerating a diagnosis like Polycythaemia vera (PV) is being able to live with anxiety in between appointments, the worry about test results when you know another blood test is coming soon, and a dread of the overall risks taking up one’s thinking.
For me I had to really be honest about how anxiety absorbed my time and try to find ways to expend that nervous energy, hence the hiking and yoga being so therapeutic. Writing for me also became essential, charting progress in my treatments and mindset so I could tell when I needed to offload about it to a loved one and/or in therapy. Writing down my furious thoughts and taking time to myself to reflect away from others has been most helpful. If you’re at all artistic use your art-making, express it all. That could be anything creative, even cooking sometimes helps me come out of anxious thinking.
So I’d say trust your own instincts like you have about not actually having apnoea. You know your body best. I didn’t think I had apnoea either so I’m glad to know either way from being tested for it. I’m sure you know anxiety can affect our sleep so let yourself take breaks or even catnaps when you need to—this is a stressful time and that can be physically exhausting on top of any cancer-related fatigue you might already be experiencing. Rest from and resume activities when fatigued, and try not to push through stress as it can leave us even more fatigued.
Maybe don’t read random stuff about Polycythaemia vera (PV) online as Dr Google is notoriously generalistic and inaccurate. My own prognosis online said 5 years—totally wrong! Try to stick to blood cancer organisations like this one or MPN Voice or even their closest US equivalent LLS for more accurate research-based information.
Sorry to go on, I hate knowing you’re out there dealing with this drawn-out diagnosis. If I may leave one last tip my lovely haematologist shared, try to keep in mind that we are more likely to die with Polycythaemia vera (PV) than from it, and in normal older age. We really can live with Polycythaemia vera (PV) with some slight adaptations.
Please keep us posted @Diane1, now that you’re part of the family.