Hi there everyone, I’m not necessarily newly diagnosed but new to the website. I’m 43 and have Essential thrombocythemia (ET), the things is when I was diagnosed my consultant explicitly told me that it wasn’t cancer, so I accepted that but was al ays confused as to why I was having my bloods taken at the beatson (very well known cancer hospital in Glasgow) it always made me feel so bad because all the wonderful people there going through treatment would discuss their journey and then ask me who had nothing to say. Anyways was anyone told it wasn’t cancer? Thank you
Hi @Cheryl82 A great big welcome to our support forum.
Firstly I will copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses and I hope others on here will share their experiences.
I have Chronic lymphocytic leukaemia (CLL) and was diagnosed 21 yrs ago and the words blood cancer were not mentioned til many years later.
I also have osteoporosis for which I am under the rheumatology department and that required me to have a 6 monthly infusion drip till recently and that was also in the cancer unit at my hospital in the haematology day unit with all the haematology department patients and staff. I know require an injection every 6 mths, and you guessed it, I am still in the haematology day unit it is home from home???
Be kind and look after yourself and I look forward to hearing more about you.
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Hello there @Cheryl82
I am really sorry to hear that you weren’t told that Essential thrombocythemia (ET) is a blood cancer, sadly this does happen but never the less we think it is very important that people truly understand their diagnosis and then get the support and information they need. It is great you have found this forum as there are many people here that can support you and share their experiences.
Essential thrombocythemia (ET) was classified as a Blood Cancer by the World Health Organisation in 2016. Our online information Essential thrombocythaemia | Blood Cancer UK supports this and also tells us that many people with this diagnosis live quite normally and manage their treatment well. May I ask how you are doing and are you on any treatment?
If you do need any support from us, please don’t hesitate to get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
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Hello Cheryl
I was told it was cancer at my first appointment. Well I say I was told, he was beating around the bush so I asked him 
I was then told it’s a good one! My response was “do you want it then”?
Subsequent appointments with different people we have agreed not to call it the c word. That it’s a condition and I’m ok with that.
I’m not sure how I would have felt if I was lied to and then googled it.
Be kind to yourself and remember we are all here for each other x
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Hi, I totally understand how you feel! I was also told my Essential thrombocythemia (ET) was not cancer, but pre cancer by my consultant. Then when I was given a booklet all about blood cancer by the nurse, I was so confused!
In the end, a few days later, I called the hospital and spoke to one of the nurses who confirmed it was cancer. I was also told it is a good one to have!
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Hello there @Cheryl82, welcome to the forum, fellow Myeloproliferative neoplasms (MPN) survivor! I’m so sorry to read you were diagnosed with Essential thrombocythemia (ET) and given such confusing information from someone who should have known better.
My first haematologist told me the Polycythaemia vera (PV) he’d just diagnosed me with wasn’t cancer even though all the official research I’d read said it is. These Myeloproliferative neoplasms (MPN) definitely are types of cancer like dear @GemmaBloodCancerUK confirms. They’ve been classed as cancers for long enough that our haematologists should really have kept up to date with their medical specialism!
I ended up changing haematologist as he made some other unforced errors and I felt like I’d never trust his judgement around my cancer treatment again. If I’ve got a long life ahead of me, as clinical research suggests, I didn’t want to tolerate a doctor who wasn’t even accurate in his understanding of what he diagnosed me with.
So, unfortunately, you’re not alone in being given incorrect information by a specialist. If you wanted to take it further and ask for second opinions you should be able to with the support of PALS: What is PALS (Patient Advice and Liaison Service)? - NHS
Do let us know how you get on and how treatment is going for you @Cheryl82.
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Thank you so much for sharing your experiences, wishing you healthy and happiness x
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Hi, it’s frustrating because they are supposed to know better than us. It doesn’t change how I feel about the diagnosis because it has been a wee while now but we should still be properly informed about what’s happening inside our bodies. Thank you for sharing your experiences with me I appreciate it.
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Totally agree @Cheryl82, and it really does risk our trust in healthcare being affected when we have the misfortune to deal with misinformed doctors. Maybe that means we need to advocate for ourselves in these situations when we have the energy and know better!
Don’t forget you can get advice from PALS should you want to. You can always call the lovely specialist nurses at Blood Cancer UK on 0808 2080 888 to talk through stuff too.
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Welcome to the site! Essential thrombocythemia (ET) can be confusing since it’s classified as a myeloproliferative disorder, which is related to cancer but often managed differently. Many doctors avoid calling it cancer outright to reduce anxiety, but it’s understandable why that would feel conflicting. You’re not alone in this—hope you find support here! 
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Hello there @RolanGoblen. Just wanted to point out that Essential thrombocythemia (ET) and other Myeloproliferative neoplasms (MPN), such as the Polycythaemia vera (PV) I live with, haven’t been considered “myeloproliferative disorders” for many years like Nurse @GemmaBloodCancerUK states. They were reclassified as blood cancers and renamed Myeloproliferative neoplasms (MPN) in the 2000s. Myeloproliferative neoplasms (MPN) aren’t just related to cancer, they are actual cancers.
As for your comment about many doctors not calling our cancers that due to reducing anxiety, that would be withholding medical information from us. If the doctors you’ve dealt with don’t consider Myeloproliferative neoplasms (MPN) as cancers then they’re sadly giving incorrect, outdated information to those of us living with these incurable blood cancers.
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Hi there, sorry it’s taken so long to come back to this, I have ADHD as well so my mind often goes off onto other things until something happens to bring me back (currently got yet another viral and was looking to see if this was common for those with Essential thrombocythemia (ET)). Other than many many virals I’m ok, well I sleep a stupid amount and always feel exhausted which is so counter to how my brain works because that never shuts up, I go through plans, problems and scenarios in my sleep it’s madness. I’m fine with the diagnosis (mostly) I don’t like being miss informed but I guess back when I was diagnosed it wasn’t classed as a blood cancer funny that how it simple change in terminology can throw a spanner in the works. I hate going to beatson, I’m happy when they just send me to the bloods clinic at another hospital but check ins are always the Beatson.
Wishing everybody the very best of love and support 
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Thank you for sharing that information Duncan very much appreciated
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Hello again @Cheryl82, lovely that you’ve returned! Please, no worries about how often you post on the forum, it’s here for us when we need it.
Sounds like you’re experiencing viruses and exhaustion with that Essential thrombocythemia (ET). Sadly, MPN (Myeloproliferative neoplasms) like Essential thrombocythemia (ET) and the Polycythaemia vera (PV) that I live with can weaken our immunities, so that might be worth bearing in mind when around others sniffling and coughing. Personally I carry a face mask to wear when I can’t avoid crowds or busy public transport and have managed to avoid any viruses so far.
Fatigue is also to be expected with MPN (Myeloproliferative neoplasms) unfortunately. Something like 80 % of us with cancers will experience cancer-related fatigue (CRF). So while you’re not alone with those exhausting side effects, it doesn’t necessarily help knowing it! I read that doing exercise can help offset the fatigue—stuff like walking, yoga, tai chi and qigong have been proven to improve energy levels in those of us living with cancers. Getting daylight into our eyes early in the day can help stabilise our circadian rhythms and help improve sleep.
One final point but my haematologist tested me for sleep apnoea as that can affect the amount of oxygen in our blood, which can also affect our energy. Might it be worth considering if apnoea is affecting your sleep?
It is funny how the terminology used can change how we see these diagnoses! Like I said previously, having a specialist using different or inaccurate terms can be really off-putting. I know what you mean about attending the cancer hospital, my own treatments are in the cancer ward of a local hospital, while my blood is drawn at a lab that anyone can go to which feels less cancery!
Anyway, hope you’re doing well despite the terminology differences from when you were first diagnosed @Cheryl82. Do keep us posted about how you get on.
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Since my diagnosis in decemever 2025. Im actually finding my mental health getting worse now. Im now going to be going back on sertraline, after speaking with a CNS other day she said such medication is okay to take. The thing is I have had virtually back to back bugs, viruses, infections since very start of October 2025. I’ve been on 4 courses of antibiotics each time. Each prescription is like 2x50mg 4 times a day. So 2000mg daily for the duration. I’ve just returned back to work last Wednesday after having my latest bout of virus. So that combined with this diagnosis ill be honest… it’s actually wearing if not already worn me down.
So sorry to read that you have some problems, thinking its good that you had consulted a doctor. Its better to be under control , sometimes with medication.
Take care