I had a routine blood test as I am on Statins, which showed elevated platelets.
I have now been diagnosed with Essential thrombocythemia (ET) and am awaiting a Biopsy.
Whilst this will have an effect on my life in terms of regular blood tests, it occurs to me that as I have no symptoms, if it had not been diagnosed I would have been oblivious to the lurking danger within my body.
Am I lucky or unlucky?
Hello there @Doug54
Thank you for posting and welcome to the forum, I do hope this space will provide you with lots of support.
It is understandable that you ask about whether you are lucky. No-one would wish for you to go through this new diagnosis but that it has been identified before any symptoms occur means that there has not been a negative affect on you physically. Being aware of having blood cancer can provoke anxiety, however you will have the hospital team (and us here) to provide you with the information and support when you need it.
Here is our Essential thrombocythaemia | Blood Cancer UK webpages for you to take a look at and do please call the Support Services Nurses Blood cancer information and support by phone and email | Blood Cancer UK if you need to talk anything through.
Take care
Gemma
Thankyou Gemma, I will bear this in mind.
I have a bone biopsy due next week so will focus on getting through that.
Hello there @Doug54, welcome to the forum. I bet you never thought you’d need one like this, or at least I certainly didn’t!
Like you I had no obvious symptoms of blood cancer but thanks to blood tests in 2023 I ended up finding out I had a JAK2 gene mutation which led to being diagnosed with Polycythaemia vera (Polycythaemia vera (PV)), closely related to Essential thrombocythemia (Essential thrombocythemia (ET)) in the family of Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)).
It’s been a strange experience, learning I am both chronically ill with cancer but also totally fine in most ways. According to my haematologist, Essential thrombocythemia (Essential thrombocythemia (ET)), like Polycythaemia vera (Polycythaemia vera (PV)), can be lived with into normal old age and is unlikely to be what causes our demise. As my lovely doctor reminds me, I’m more likely to die with Polycythaemia vera (Polycythaemia vera (PV)) than from it. I hope that might offer some hope.
As for the bone marrow biopsy, I had one prior to my final diagnosis and it passed uneventfully and without any pain, although I’ve read and heard some horror stories. I think it’s painless if you’re anaesthetised well so do ask for that. Mine felt a bit like having teeth pulled under anaesthetic, if you know that sensation, and the area of my lower back where they went in felt a bit bruised for a few days, but that was it.
Do look around the forum as you’ll find many survivors of Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) here, living well and sharing experiences of our various medicines for Essential thrombocythemia (Essential thrombocythemia (ET)). Personally I’d agree with dear Nurse @GemmaBloodCancerUK and would say you’re lucky to have caught that Essential thrombocythemia (Essential thrombocythemia (ET)) before any clotting events! Glad you found us @Doug54.
Hi Duncan
Yes my glass is definitely half-full, in the grand scheme of things I have had 70 years of life, and Essential thrombocythemia (ET) whilst unwanted could be a lot worse than other cancers.
Thanks for your advice about the biobsy.
Best Wishes
Doug
Hi Doug
Sorry to hear about your diagnosis. As a sufferer of Polycythaemia vera (PV) and Essential thrombocythemia (ET) also jak2 I have some idea of what you are going through. It’s good you are being positive about it . I am having venesection treatment and hydroxycarbamide treatment and doing very well. My biggest problem was frustration of not being in control, but the people treating me put my mind at ease.
As a half full person I would advise you to drink it up and start another one, there is still lots to look forwards to and enjoy.
All the best Steve H
I count myself lucky, my Essential thrombocythemia (ET) picked up in pre-op blood tests and no symptoms that I was aware of. Better that than having a blood clot or embolism. The random nature of the mutation (I am Jak 2 positive) and having an Myeloproliferative neoplasms (MPN) feels really strange, but I think the good luck of finding it outweighs the bad luck in having it.
Best wishes with your treatment and a good life to come.
Fiona
Hi Steve
Yes exactly right.
At the end of the day we are all on a rollercoaster ride where we have no control. So put your hands in the air and shout “ What a ride”
Take Care
Doug
Thankyou Fiona
Your comments were very welcome
Hello everyone, my names Louise I’m 44 and was recently diagnosed with either Essential thrombocythemia or suspected primary myelofibrosis. I first had symptoms of left side stomach pain and bloating. I visited a gastroenterologist and was given an ultrasound, it discovered a very enlarged spleen. I was sent for a MRI and my spleen measured 22cm! I then went for multiple blood tests cbc(high platelet count) and JAK 2 (this was negative) bcr abl negative.
I had a bone marrow biopsy done but so far no fibrosis shown although there were megakaryocytes present. 3 cbc tests later, my platelets rose again so I’ve been put on hydra, aspirin, feburic and iron for anemia.
I have headaches most days and tiredness, as well as aches and pains.
I’m not sure when my hematologist will be able to tell which of the two MPNs I have but I’ll have to repeat the bone marrow biopsy again in a few months time. The hematologist said he expects to see some fibrosis. I have to have repeat blood work every month.
I am from London originally but have lived in Cairo Egypt for a while. I do have PCOS and GERD.
I do wish everyone the best on their journeys with Myeloproliferative neoplasms (MPN).
Louise
Hi @Lou-ET,
Welcome to our forum and thank you for posting. I hope you find it a safe and welcoming space and receive lots of peer support.
I am sorry to hear about your recent diagnosis. It is understandably a difficult and challenging time for you especially when you have not been given a definitive diagnosis. I hope you are looking after yourself and have good support around you. I have enclosed some information here which you might find helpful looking after yourself.
Please keep posting and let us now how you are getting on. We are all here to help and support you.
Take care
Fiona (support services nurse)
Thank you, it’s much appreciated.
Hello there @Lou-ET, welcome to the forum, fellow Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) survivor. I’m so sorry to read of your ongoing diagnosis and uncertainties and can relate as I was a similar age when diagnosed with one of the Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) in 2023, namely Polycythaemia vera (Polycythaemia vera (PV)) in my case, although there was some talk of it possibly being Essential thrombocythemia (Essential thrombocythemia (ET)) initially.
You’re being so patient in awaiting your diagnosis and trying to understand where in the Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) family it might land, but yes isn’t it a scary time?! Like you, I’m a Brit outside the UK and so for me there’s been some situations of me not knowing the right questions to ask or what to expect from my healthcare after growing up with the familiarity and efficiency of the NHS.
Something that helps me is to write down all my queries and save them up for when I speak to my haematologist. He’s pretty great at responding to emails in the interim too, and perhaps yours might be as well? I also ask my phlebotomists when I see them as they have lots of great tips. The lovely Blood Cancer UK nurses are also an incredible font of knowledge and support so do consider reaching out to them too, you’ll often see them responding to us around the forum as Nurse @Fiona_BloodCancerUK has.
I’d say never sit alone with any worries, and certainly let your specialist know of any symptom changes and how you get on with hydroxyurea. I hope you were told about how hydroxyurea affects fertility. A good haematologist will want to tend to all your symptoms, emotional and physical, including stuff we might never imagine is connected, like mine testing me for sleep apnoea which can affect how much oxygen we have in our bloodstream.
While you await your overall diagnosis, perhaps you might like to read about Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) generally, and follow links to the more common (yet still very rare) ones like Polycythaemia vera (Polycythaemia vera (PV)) and Essential thrombocythemia (Essential thrombocythemia (ET)): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
After I’d started hydroxyurea in 2023 I developed quite a tender spleen and my haematologist told me that with these Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) our bodies can overproduce so much blood that our spleens can start making it, and sometimes even our sternums. Our spleens can shrink back to normal and that should relieve the pain, which I understand usually indicates our treatments are helping to slow down the blood cell overproduction.
I’m sorry to read of those other diagnoses and their symptoms that you live with. After I’d got my head around having Polycythaemia vera (Polycythaemia vera (PV)) it dawned on me that it could have been affecting me for years, causing previous ailments and even the heart attack I survived. Perhaps the PCOS and GERD could be related to your overall blood disorder diagnosis? Might be worth investigating further. Try not to worry about any fibrosis, as far as I was told this sort of development of bone marrow scarring tends to be very slow, but again check this with your doctor.
Anyway, I’m sure that’s enough to be getting on with! I’m so glad you found the forum @Lou-ET, please keep us posted about your ongoing diagnosis and treatments. Do keep looking around the forum as you’ll find plenty of us surviving Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) here sharing our experiences.
Thank you so much for your response. I feel much better and will continue to look at the page and all the forums. I do hope you are doing well and continue to do so for years to come. I appreciate the time you took to write to me and the information you shared is very helpful.
I’ll hopefully post an update after my next blood tests are done next month.
Kind regards
Lou
Aw that’s so great @Lou-ET, I didn’t want to overwhelm you but sometimes it’s helpful to hear from others living with similar concerns, even the grim stuff. Glad to have offered helpful info! I’m doing well, thank you, and hard as it is to believe I’m living life more healthily and with less anxiety than before diagnosis. Hopefully that can be the case for you as well Lou.
I sadly don’t know of any Egypt or Africa-specific blood disorder organisations, but you may find MPN Voice helpful as they focus on our family of blood disorders and have lots of great information, maybe have a look when you’ve got the energy. Do please share any findings you come across, I’m sure as an educator you’re great at sourcing information!
I’ll look forward to reading how you get on. Might be worth bearing in mind that Myeloproliferative neoplasms (MPN) are considered cancers in the UK and thus places of work legally need to accommodate adaptations for people living with them—perhaps there are provisions where you work?
Do take care and remember you’re not alone with whatever the diagnosis ends up being.
Hi Duncan, I’d say Egypt is very limited in such things and it isn’t deemed as a cancer here! There isn’t even a name for Myeloproliferative neoplasms (MPN), they explain it as the bone marrow making too many platelets and that’s it.
I must say my hematologist is great and has a very good reputation in Cairo. My insurance covers most things but getting the Hydrea 500mg medication has been difficult and is low in stock in most pharmacies here as it’s imported.
There’s no such thing as the NHS in Egypt and sometimes that plays on my mind.
I do speak Arabic but not brilliant even after all these years. Thankfully many speak English and my workplace colleagues are predominantly British so it’s a home away from home.
I am thankful to find out what’s wrong as it’s been months of tests! My mind was in turmoil and making up all sorts of outcomes. I must say it has given me a wake up call because I haven’t been very kind to myself over the years, I guess it’s time to start and make every day count.
I’ll keep you updated and please do so in return. I will check out the (Myeloproliferative neoplasms (MPN)) Voice thanks 
Ah so interesting @Lou-ET, I wondered what healthcare might be like there. So cool that you speak Arabic, I’m sure that helps a lot even when there are different names for medical stuff. Within Africa I’ve only been to Morocco and it seemed pretty modern around the bigger cities, perhaps similar to Cairo.
You’re not alone in having doctors who don’t describe your blood disorder as cancer—my first haematologist here in Northern California told me outright upon diagnosis that Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))) was not blood cancer, and that hydroxyurea was not chemotherapy, so that was the beginning of the end for him being my doctor as research I’d read said otherwise! My current one is lovely and up-to-date, thank goodness 
Glad you have at least some access to the hydroxyurea. There have been shortages of interferon around the UK, another of the potential treatments for Myeloproliferative neoplasms (Myeloproliferative neoplasms (Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)))), which many forum members have mentioned being frustrating. I’ll keep my fingers crossed that there’s no shortage of hydroxyurea for you. Just collected my latest batch yesterday 
Know what you mean about feeling thankful to find out. I still feel relieved to know sooner rather than later, and some guilt for having an easier time of it during diagnosis than others. For me knowing my diagnosis gave me something a little more tangible to learn about and get to grips with, I hope you get more clarity soon. Yes to making every day count!