Hi, I wanted to introduce myself on here because I hope that in doing so I will feel less alone. I’m Jamie, and I’m 17 and I’ve just been diagnosed with Jak2 positive Essential thrombocythemia (ET). I don’t think I’ve quite processed this diagnosis yet, and frankly I’m scared and angry and confused. I’m only 17, I don’t understand why this has happened to me. I would really appreciate any advice or guidance that might help me come to terms with my diagnosis.
Thanks!
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Hi @jamie17 and welcome to the forum,
I’m so sorry you find yourself here and it’s so understandable that you are feeling a range of emotions.
There are lots of people on here with the same diagnosis who will be able to share their experiences. I can promise you will not feel alone now you have your forum family.
I can imagine it’s really tough to process all this information and you need to give yourself time and take each day, hour minute at a time.
Have you had the opportunity to ask the consultant the questions you have?
Please use this space to say how it really is for you. We are here any time day or night. It’s a safe space with people who understand.
I don’t know if talking about it helps you? If so the support line is an amazing place to talk things through - when and if you’re ready to.
Blood cancer information and support by phone and email | Blood Cancer UK.
I think you are really brave reaching out and posting on the forum x
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Hi @jamie17 I am so glad that you have found us, welcome, and thanks for posting, you are now part of our forum family.
Do you have any family or friends to support you?
Unfortunately conditions seem to know no boundaries and I found when I was diagnosed 20 yrs ago, with another blood cancer, I was in shock for a long while and processing it and accepting it took a lot longer.
I had so many thoughts and feelings, often conflicting, whizzing around in my head.
I actually benefitted from some talking therapy through my GP, and Macmillan Cancer Care also offer it.
I will copy the Blood Cancer UK details on blood cancer in young adults
Blood cancer and young adults | Blood Cancer UK
I hope others will be able to share their experiences.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
Perhaps write down all your fears, questions and practicalities for your next appointment.
I have found this is a safe space for me to say how it really is for me.
Please do keep posting as I look forward to hearing more about you.
Please do really look after yourself and be ever so kind to yourself
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Hi @jamie17 i was diagnosed with the same in Feb this year. It’s a scary diagnosis at first that’s for sure but now after a few appointments I’ve been told by my consultant to think of it as a condition…. Not the c word as the minute you tell anyone they think the worst. That works for me!!!
This forum is fab. Take care.
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Dear @jamie17,
I am so sorry you find yourself here but really glad you have found us and we can support you through this!
Firstly I would like to say we are very much here to support you and should you ever wish to talk our support line is open and we are here to listen and help, our number is 0808 208 0888.
The way you are feeling right now is completely normal, I would encourage you to roll with the emotions but do continue to talk. Do you have a good support network?
Can I ask if you have been allocated a Clinical Nurse Specialist (CNS)? If you haven’t it would be worth reaching out to your team and asking if there is a Teenage and Young Adult (TYA) Service at your hospital? A TYA CNS would be a massive support to you and I think it is really important you are able to access this.
You may or may not be aware that ‘Essential Thrombocythemia’ falls under an umbrella term ‘Myeloproliferative Neoplasms’ (Myeloproliferative neoplasms (MPN)) I have attached a little information about this here - What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
The reason I mention this is our colleagues at MPNVoice has a young persons network and provide a buddy service if this would be something you are interested in, I have attached the link so you can explore this when you feel ready. Young People and MPNs Blog – MPN Voice
Going forward you may wish to ask to see an Myeloproliferative neoplasms (MPN) specialist, there are many around the UK, they are Haematologists with a specialist interest in Myeloproliferative neoplasms (MPN) Diagnosis’. They would be able to see you and offer recommendations to your team on how best to manage your diagnosis. We can help you navigate this if you would find it beneficial.
For now, give yourself lots of time and space to adjust to the news. You have had some lovely support and comments here already and I know our community here will do everything they can to support you.
Take good care,
Heidi J (Support Services Nurse)
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Hello @jamie17 - I am pleased you have found this supportive forum to touch base with others that understand the situation you are dealing with at the moment so as not to feel so alone with it all. As mentioned Myeloproliferative neoplasms (MPN) Voice is an excellent resource to use to learn more about your condition and find that there are others just like you diagnosed at a younger age and how that is for them too, do visit the website and take a look. I have Essential thrombocythemia (ET) too diagnosed 18 years ago and been on treatment since diagnosed both Hydroxy and Pegasys interferon at different periods. I was in my mid 40s when diagnosed BUT the bit relevant to you is that I actually first had problems with my blood when I was 17 - that was way back in the 1970s when testing and diagnosis was very far from what it is now and although I had unusual blood counts and was under the haematology department nothing concrete was diagnosed and I was discharged after a couple of years- after that i would have patches every few years when my blood counts were abnormal and I was unwell GPs would notice it then the counts went back to normal again and that went on for 25 years or so! These days testing is spot on and so many more younger ones like yourself are diagnosed just as I would have been as a 17 year old all those years ago had testing been as it is today - I say all that to give reassurance that finding the condition now for you will prove to be a good thing so that as you go about your life someone at the hospital can keep a check on you every so often so you have that assistance as and when and if needed - I well understand that diagnosis doesn’t feel easy at all to come to terms with but as you learn more about the condition you will find many have been living successfully with it for many decades and to have the input of professionals earlier on in your life is a good supportive thing. Do keep popping in with us here and let us know how you are getting on.
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Hey there @jamie17, welcome to the forum. I’m really so sorry to read of your diagnosis with Essential thrombocythemia (ET), and at such a young age. No wonder you’re feeling scared, angry and confused. Feel it all I say, better out than in.
I was diagnosed with the JAK2 gene mutation and a closely related Myeloproliferative neoplasms (MPN) to Essential thrombocythemia (ET) last year, Polycythaemia vera (PV), and empathise with what you’ve shared so clearly. Even now it can feel like “why has this happened to me?” It really f**ks me off, to be honest!
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 (MPN). We will likely die with these Myeloproliferative neoplasms (MPN) rather than from them, hard as that might be to believe right now.
Treatments for these Myeloproliferative neoplasms (MPN) have been around for decades and can help us maintain relatively normal lives. We do need to be mindful of general infections affecting us more, and we are slightly immunocompromised, but as our rare blood cancers are chronic it means they develop slowly and can sometimes need only regular blood tests to keep check.
Not going to lie though, it’s that long-term aspect which takes getting used to. Knowing that we have these gene mutations causing our bodies to make too many blood cells can feel like some kind of body horror for me.
I wonder if you have loved ones you can share this diagnosis with? Trusted adults you can be open around now can be a great support. Joining this forum is a brave and helpful move. You’ll find many folks living well with Essential thrombocythemia (ET) here.
If you feel you need someone separate from loved ones to talk to, you can always chat to one of the lovely specialist nurses here on the forum, they can be reached by phone on 0808 2080 888.
You could also speak to your GP and ask to be referred for therapy which can be super helpful. Perhaps you’re at school and have access to a counsellor there. Even old farts like me need to be able to offload about all this! I unashamedly rely on therapy to help me process living with Polycythaemia vera (PV) for the rest of my life. It’s a big deal! Seek support from someone you trust, I’d say.
Something else that helps me is keeping active, getting out into nature to hike or just be somewhere awe-inspiring that makes my silly human concerns seem smaller somehow. Yoga is really good too, helping with breathing and stamina to tolerate the stress. Keeping active is really good at improving energy levels too when cancer-related fatigue affects us.
I see other folks have already shared great links. I’d say be mindful of where you find information about Essential thrombocythemia (ET), and maybe don’t just google it as there’s a lot of inaccurate and frankly outdated information at the end of a quick search. Maybe have a look at the Blood Cancer UK information on Essential thrombocythemia (ET) when you have the space for it as it’s research-based: Essential thrombocythaemia | Blood Cancer UK
That’s probably more than enough to take in right now! I really feel for you @jamie17. Please remember you’re not alone with this and that you can always come here to share how you’re doing. I’m sure if you look around the forum you’ll find others living with Essential thrombocythemia (ET) who offer wisdom and maybe been reassurance that you can process this difficult diagnosis.
Do please keep us posted about how you get on.
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