Hi I’m 18 years old and I have recently been diagnosed with Essential thrombocythemia ('ET'). Whilst I am considered a low risk, reading up on this condition does not ease my anxiety. Most websites seem to suggest that people diagnosef young can live beyond 33 years after diagnosis. This still only takes me to early 50s and is troubling me a great deal . Has anyone else ever been diagnosed from a young age and lived beyond this suggested 33 years?
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Hi @Debbie100 Welcome to the forum.
Being 18 and diagnosed isn’t what you or anyone would want.
I was diagnosed with a different cancer in 2023.
There are others on the forum who have your diagnosis who I’m sure will post and answer questions the best they can.
You are bound to feel anxious and this is completely normal.
Here’s a few thoughts that might help:
- Be careful what sources you read from. MacMillan and Cancer Research UK as is Blood Cancer UK site which you have already found are excellent sources of information.
- Every person dealing with blood cancer is different. Anything like statistics can only be averages.
- Your clinical team are best placed to advise.
- If you have a Maggies Centre near you they provide some excellent support.
- Try to take things one day at a time and don’t look too far ahead. Easy to say but not always to do.
Hope that helps
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Hi @Debbie100, and welcome to the Forum, though I’m so sorry about the diagnosis that brings you here at such a young age.
I can understand why reading statistics has fed your anxiety rather than eased it; it’s hard not to turn to ‘Dr Google’ or even AI when you’ve just been told you have a blood cancer. But it’s worth knowing that the figure you’ve come across isn’t the whole picture, and I’d encourage you not to read too much into it. Our information on ET prognosis explains that “Essential thrombocythemia ('ET') is a lifelong (chronic) condition and people with Essential thrombocythemia ('ET') are expected to live a normal lifespan”.
You’re not alone in being diagnosed young with Essential thrombocythemia ('ET'), and there are others on the Forum who’ve been in a very similar position. There’s a thread about ET in younger adults here that might be worth a read , and we have this webpage that might be useful too: Blood Cancer and Young Adults.
Our Support Line is also there, where you can speak to our wonderful blood cancer nurses who can support you both with the medical/pragmatic side of diagnosis, as well as the emotional. You can call them for free on 0808 2080 888 (option 1) or email support@bloodcancer.org.uk.
Keep posting whenever you need to, and take care.
Ceri - Blood Cancer UK Support Services
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Hi Debbie, I was first diagnosed with Essential thrombocythemia ('ET') back in 1993, when I was 33 I am now going on 67 so I can understand your concern as I too have read the 33 year figure. For all those years I was on one 75 mg asprin daily and now due to my age being classed as high risk I have been put on 500mg daily hydroxycarbamide. I guess all we can do is trust in our hematologists and try to live a normal life.
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Hello there @Motorman, welcome to the forum. Thank for joining and for sharing this, it’s really heartening to know you’ve been living with Essential thrombocythemia ('ET') for so long. Well done, I hope to do likewise with Polycythaemia vera ('PV')!
I was diagnosed in 2023 and take aspirin and hydroxyurea like you. I hope the change in medicines is treating you well, here’s to another 33 years or more, right?
Do please keep us posted about you get on @Motorman. If you haven’t already, perhaps look around the forum as you’ll find many others living well with Myeloproliferative neoplasms ('MPN') like Essential thrombocythemia ('ET'). Here’s a lovely group of folks who comment regularly: ET diagnosis finally sinking in
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Cheers for that Duncan. I just came across something you posted back in 2024. I hope you dont mind me copying and pasting here, but I thought it might be helpful to Debbie.
Something that my haematologist and nurses and learned folks here have shared about blood cancers is that it’s just a horrible twist of misfortune that these gene mutations occurred in our bodies. It’s not something we’ve done, or shouldn’t have done.
Another thing my haematologist told me which might be of some relief, or perhaps something to remind yourself of when you’re feeling rubbish about all this, is that we are likely to live long lives and pass away from normal old age—not from these Myeloproliferative neoplasms (Myeloproliferative neoplasms ('MPN')). We will likely die with these Myeloproliferative neoplasms (Myeloproliferative neoplasms ('MPN')) rather than from them, hard as that might be to believe right now.
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Ha funny @Motorman, I was just thinking of how to greet @Debbie100! Don’t mind you sharing that at all, share and share alike I say. I do slightly dread to think of how much I’ve waffled on around the forum!
Hello there Debbie, welcome to the forum. I often think of it here as the last place you’d ever imagine needing, but the first place you actually might need at times like this for you. I’m really sorry about your diagnosis.
I see you’ve been warmly welcomed already and I can’t really add to those links and thoughts that dear @Ceri_BloodCancerUK and @DuncanB have shared, but I would urge you to have hope. What I understand from my haematologist is that we really can live into normal old age with Myeloproliferative neoplasms ('MPN') such as Essential thrombocythemia ('ET') and the Polycythaemia vera ('PV') I live with.
Something I didn’t really get for a while is that Essential thrombocythemia ('ET') and Polycythaemia vera ('PV') are considered chronic blood disorders, as opposed to being acute, so will likely only slowly develop, if at all. Maybe you’d like to have a read about Myeloproliferative neoplasms ('MPN'): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Do keep us posted about how you get on @Debbie100, and perhaps have a look at that thread I shared with @Motorman where you’ll also find many others talking about how it is to live with Essential thrombocythemia ('ET').
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