I was seen in the Haematology dept in a UK hospital and was given a book telling me this is what you have, Essential thrombocythemia ('ET') was circled, and this is what it may turn into, the second being starred. Cancer was not mentioned and didn’t realise until I had left the office and looked at the book I had been given, My head was ready to explode, I was scared and didn’t really understand what was happening. I am currently taking Hydroxycarbamide and asprin, have been told by a GP and a pharmacist that I don’t have a cancer, yet the consultant says it is a cancer. I feel confused and very alone, every 3 months I have a blood test and every 3 months all I’m told is everything is fine. I wish all uk medics were ‘singing from the same hymn sheet’ I have had one visit to an oncology dept, where no one seemed to know what to do with me. I suppose this is more of a rant than questions, but reading about the support others have recieved I feel even more isolated.
Hi @Pat4 Welcome to the forum.
I’m sorry to hear your experience from your consultation wasn’t as good as it could have been.
You may want to reach back out to your clinical team and speak to someone.
It may be that there was too much for you to take in at your appointment. In truth whilst majority of Consultants excellent at talking through things no doubt there will be exceptions.
You will find people are really helpful here so if you have questions do ask.
Hope that helps
Hello there @Pat4, welcome to the forum. I’m really glad you found us as it sounds like you’ve been given some confusing information and maybe you can find some answers here.
Perhaps you would like to read the great Blood Cancer UK information about Essential thrombocythemia ('ET'): Essential thrombocythaemia | Blood Cancer UK
In 2023 I was diagnosed with Polycythaemia vera ('PV') which is closely related to Essential thrombocythemia ('ET') and both are types of Myeloproliferative neoplasms ('MPN'): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
In fact, we have the same treatment of aspirin and hydroxyurea, and my first haematologist told me the Polycythaemia vera ('PV') he’d just diagnosed me with was not cancer. This was so confusing to me as all the official literature I’d read said Myeloproliferative neoplasms ('MPN') are a type of blood cancer!
While I’m not a doctor, it is a fact that Myeloproliferative neoplasms ('MPN') like ours are considered to be blood cancer, and have been since being classified as such by WHO in the 2000s.
I’m so sorry to read of how isolating this has been for you. Please know, like @DuncanB says, that you are not alone with your diagnosis and there are many of us living well with these Myeloproliferative neoplasms ('MPN') around the forum, sharing our experiences of these rare disorders.
If you use the search box at the top you will find many comments about Essential thrombocythemia ('ET') and Myeloproliferative neoplasms ('MPN'), and at the bottom you can see Related Topics which may also reassure you that you have found many others who know what you’re experiencing.
Perhaps that’s enough to be getting on with for now, but if you like we can also offer suggestions for ways to get more accurate information from your specialists.
You can also reach out to the lovely Blood Cancer UK nurses who are experts in all this. They can be called free on 0808 2080 888 and emailed at support@bloodcancer.org.uk.
Do please let us know how you get on and how treatment is going @Pat4.
MPNs are complex and as one doctor friend said to me “if you are going to get a cancer, thats probably the best one to get”. Unfortunately my instinct is that for many consultants us Myeloproliferative neoplasms (‘Myeloproliferative neoplasms ('MPN')’) patients are not seen as the highest priority for their time or support (which is sort of understandable); but also that we are lucky if we get to see someone fully versed in them, Many Myeloproliferative neoplasms (‘Myeloproliferative neoplasms ('MPN')’) patients learn that we quickly need to develop a strong laypersons understanding in order that we can be effective advocates for ourselves. My understanding is that MPNs were not classified as a cancer until about 15 years ago when the WHO redesignated them, and inevitably some clinicians havent caught up, hence the confusion. The Blood Cancer UK forum is great, but there is also a specialist forum run by MPNVoice (you can search) which is focussed entirely on our conditions and which is well worth a visit. Dont panic, there is so much support out there!
Hi @Pat4 and welcome to the forum.
I think that first appointment is so difficult and I really think patients should be offered a follow up a couple of weeks later.
Leaving and then reading that it was cancer must have been a real shock.
I remember leaving my diagnosis app in a fog. I don’t really remember much and by the time I got home, I had more questions than what I went in with.
As others has advised, I would contact your team and ask for another consultation if that’s what you need. In the meantime, write down all of your questions and call the support line if you need to talk things through.
Nichola
Hi @martin151 I had an Myeloproliferative neoplasms ('MPN') diagnosis (Myelofibrosis).
Fortunately I had a Consultant at the start of my treatment who had a special interest in Myelofibrosis. So time for me was never an issue at any point.
Hopefully all going well for you.
Dear @Pat4 ,
Welcome to our forum although I am sorry for the reasons you are here. It sounds like an extremely difficult and challenging time for you and it is understandable that you are feeling scared and isolated. I am sorry to learn that you were not told that Essential thrombocythemia (‘Essential thrombocythemia ('ET')’) is a type of blood cancer and you found out this way. Sadly this is still happening. It was classified as a Blood Cancer by the World Heath Organisation in 2016 and this is supported in our booklets and online information.
Maybe you could ask your Haematology team to write Blood Cancer on your clinic letters if this has not been done so already? This will be seen by other health care professionals who do not understand it. How are you feeling on your medication? Do you have a key worker/Nurse or numbers to call if you have any concerns?
I can see that you have already been given lots of support here by our wonderful forum members so please know you are not alone and we are all here for you. The forum is a safe and supportive environment and a good place to rant.
If it would be helpful to talk things through in more detail or we can support you further, the specialist nurses are very much here for you on 0808 2080 888 or support@bloodcancer.org.uk
Take care and keep posting
Fiona (support services nurse)
Hello @Fiona_BloodCancerUK I thought Myeloproliferative neoplasms ('MPN')’s were classed by the WHO as blood cancers in 2008? That is when I became eligible for free prescriptions on the NHS if I remember rightly. Please could you clarify. Thank you. Willow x
Hello there dear @Willow, hope you’re doing well! I’ve read conflicting dates for this, both 2008 and 2016 confusingly. I tend to go with the WHO reclassification year of 2008 as they still seem to be a trustworthy organisation.
Thank you @Duncan for explaining that
Hi @Willow ,
Sorry if I confused you. Thankfully @Duncan has clarified my information 
The 2016 is the revised WHO classification of Myeloproliferative neoplasms ('MPN') diagnosis and was introduced following updates and recommendations since the original 2008 edition.
Take care
Fiona (support services nurse)
Thank you @Fiona_BloodCancerUK