I am a 67 year old woman from SE London, recently diagnosed with Essential Thrombocythaemia ('ET'). I am absolutely terrified as I thought I was a healthy person with a long life ahead of me. This has hit me very hard and I would really like to hear from anyone who can relate and share their experience as well as some positivity! I keep having panic attacks and I am really struggling to make a decision regarding treatment. Can anyone help please? I would be so grateful. My computer skills are not great so I do hope I have found the right place and my message gets though!
I was diagnosed with a different Myeloproliferative neoplasms ('MPN') 3 years ago called Myelofibrosis.
There are several people here on the forum living with Essential Thrombocythaemia ('ET') and there are a number of active threads with experience of living with the condition.
You’ll find everyone here on the forum to be really supportive as we all understand the realities of living with blood cancer.
I’ve shared a link to a thread that might be helpful below.
It might be helpful to speak with the @BloodCancerUK-SupportTeam in the morning to talk through things and assist with your decision making. They can be reached by phone.
You can call them for free on 0808 2080 888 from 10am tomorrow.
Thank you for taking time to reach out and post in the forum
You are definitely in the right place, if I may be so bold, as I am confident you will find the forum a very supportive and informative place filled with lovely people.
Clearly your diagnosis has caused you an emotional strain and my heart goes out to you. If you want to speak directly with some one we have a dedicated team of nurses and trained support service officers offering support and information to anyone affected by blood cancer.
You can call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.
Our phone lines are open:
Monday, Wednesday, Thursday, Friday: 10am – 4pm
Tuesday: 10am – 7pm
Saturday: 10am – 1pm
Sunday and bank holidays: Closed
Alternatively, call us anytime and leave a message and we’ll get back to you within one working day.
I am a few years younger than you (59 in Feb) but I feel I can relate to your feeling panicked by the diagnosis, as I am a Chronic lymphocytic leukaemia ('CLL') patient diagnosed in early 2025 and how I felt at the time I was given the news and the weeks and months after are still quite fresh in my mind. That having been said, I think everyone deals with their feelings in their own way, but please don’t hesitate to reach out for support. You are not alone.
Living with blood cancer such as leukaemia, lymphoma, myeloma or any other type can be challenging, but there are a few things it may be helpful to keep in mind.
It’s normal to go through lots of emotional ups and downs. However you feel, it’s OK. You’ll probably have good and bad days, and you won’t be the only one who feels like this.
There are little things you can do to feel better. Recognising and acknowledging your emotions, being kind to yourself, trying mindfulness exercises and staying active can all help. There is also professional help out there if you need it.
Please keep in touch with the forum, I am confident there are people with similar circumstance to your own and I’m also confident they will post a response to you
Thank you Mike. I already feel reassured and supported just by your responses. I’ll be reporting back! I have really struggled to work out how and where to post - my IT skills also need some support - so I’m really pleased my post got through!
Just to let you know @Ceejay that if you add the @ symbol before the name of the person you’re responding to that will ensure that they see your reply when signing in
Hi Ceejay, like you , I have recently been diagnosed with Essential Thrombocythaemia ('ET'). I was a fit 68 year old and it came out of the blue. I have struggled very much since my diagnosis and have found I have lost trust in my body. Every symptom I feel now scares me into thinking it is cancer somewhere else. It has completely knocked my confidence. That being said, the daily asperin and hydroxycarbomide have worked well and my blood results are improving. Everyone says that this is a period of acceptance and change and that eventually it will all become second nature. I am 8 weeks into treatment and it still feels very overwhelming but I know that eventually I will just find my new normal. Always happy to chat and what I can say is that the forum is very helpful and welcoming. Please stay strong and know that you are not alone with this.
@Ceejay really sorry to hear about your recent diagnos and @Judi for yours as well. I understand your worries and fears, I was diagnosed with essential thrombocythemia 2 years ago at the age of 36 was a complete shock when I was told by my haematology consultant what the condition was etc, my first thought was I’m going to die very young, 2 years on and I know longer feel that way and my consultant keeps telling me I am most likely to die with the condition than from It, I take a baby aspirin daily and a pegasys injection once a week and my bloodwork Is stable and my symptoms have improved since being on the pegasys, I wish you both well and as @DuncanB has pointed out their’s people on the Essential Thrombocythaemia ('ET') diagnos finally sinking In forum that have the same condition we do and they are very supportive and lovely to talk to and I’ve learned quite a few things what others are going through as well. Good luck and take care
Hello there @Ceejay, welcome to the forum at this difficult time. I’m so sorry about that diagnosis of Essential Thrombocythaemia ('ET') and I can empathise with how scary it can feel.
I’ll just share here the great information from Blood Cancer UK about Essential Thrombocythaemia ('ET') for your reference, take your time and dip into it when ready: Essential thrombocythaemia | Blood Cancer UK
I was diagnosed similarly to you in 2023 with another of the Myeloproliferative neoplasms ('MPN') called Polycythaemia vera ('PV'). People living with Myeloproliferative neoplasms ('MPN') tend to have very similar treatments and despite Myeloproliferative neoplasms ('MPN') being rare we’re like a big family on the forum, there’s so many of us living well! Surprising as that may seem right now. Here’s the Blood Cancer UK information about Myeloproliferative neoplasms ('MPN'): Myeloproliferative neoplasms | Blood Cancer UK
Those panic attacks sound really horrible and I wonder if you’ve looked up some breathing exercises to help slow things down when panic is rising. Some simple slow breathing can help find a calmer moment or two, and try telling yourself that of course you would be anxious right now, what could be more anxiety-provoking than this sort of diagnosis?!
It’s okay to feel worried, I’d say it might be strange not to feel anxious. Here are some great tips for managing our strong emotions at times like this: Blood cancer: mind and emotions | Blood Cancer UK
Would it help to contact the lovely Blood Cancer UK nurses? They can help you decide about treatment, advise on ways to reduce anxiety, and are experts in all this. Their details are 0808 2080 888 and you can email them too at support@bloodcancer.org.uk
Another way to feel less worried is knowing others understand how you’re feeling as they’ve also had similar diagnoses. I see you’ve had so many lovely supportive responses already from dear @DuncanB, @GenesisDevice, @Judi and @RA2000 which shows how friendly it is here.
If you’d like you can also search for others on the forum living with Essential Thrombocythaemia ('ET') in the search box at the top of the screen and reply to their posts. You’ll find friendly threads like this: ET diagnosis finally sinking in
Hope that helps a little @Ceejay, do please let us know how you get on, and remember you’re not alone with any of this here.
@Judi
Oh Judi, lovely to hear from you! I echo everything you have said! It seems I am a matter of weeks behind you so it would be great to keep in touch. I am completely overwhelmed by anxiety & sadness. Like you,I have lost trust in the body that has always been healthy & strong up til now. It doesn’t help that I am somewhat hospital & needlephobic…
I’m sure this forum will be a Godsend.
Take care
Hi Ceejay
Please do keep in touch as I know myself how good it is to talk your worries over with someone who is on a similar path. Take care and as I am constantly told, take one step at a time!
Hello @Ceejay
I am so pleased you joined the Forum and were brave enough to post. I am sorry you’ve had a recent diagnosis of Essential Thrombocythaemia ('ET') and this has caused panic attacks. It is completely understandable that you feel terrified, and as others have let you know, getting a blood cancer diagnosis can cause so many emotional responses. Some people can be calm and accepting; particularly if they had months of symptoms without an answer for what caused them, whilst others who felt well, didn’t have symptoms and the diagnosis came out of the blue can feel frightened, upset, angry and confused. There is no right or wrong way to feel; each person will have a different understanding or knowledge, completely different life experiences and events that all contribute to their emotional journey. Just know that however you are feeling is okay, you don’t ever need to apologise for it or justify it, but do reach out for help and support before it overwhelms you.
As others have suggested you may find it helpful to talk to one of our specialist nurses, you’d be more than welcome to call our support line. We aren’t counsellors or psychologists, but we can discuss how you are feeling, talk about medications and what they entail or anything else related to your new diagnosis. Hopefully we can offer lots of reassurance to you.
I am sure that being part of the Forum now, and hearing from others will help you feel less alone in the coming days and weeks.
Do keep posting, let us know how you are getting on - whether it’s a good or bad day for you. Keep asking questions too, we’re all here for you.
Take care, Heidi.
I would just like to say I understand how you feel. The early days of diagnosis can be so overwhelming - plus trying to understand the medical terminology, and making decisions with regard to medication only adds to this. Your anxiety levels are high, but it won’t always be like this!
I was diagnosed with Essential Thrombocythaemia ('ET') (Jak2+) in 2016 in a random blood test. The criteria for cytoreductive therapy was Jak2+ and age 60 at the time. I was immediately started on hydroxycarbamide. I dreaded taking that first tablet, but I plucked up the courage and it has worked well for me in the 10 years since I have taken it. Initially I had the odd mouth ulcer, but absolutely no symptoms since. I do get occasional fatigue, but that could be age the disease itself or a combination. I remain on the same dose 500mg 5 days a week and the weekend free. My platelets run around 320/50.
As you live in London I would advise you to be referred to Guys hospital if that’s possible. They are the experts in MPNs. Try not to worry, I know it’s easier said than done at this stage.
Educate yourself on Essential Thrombocythaemia ('ET') from reputable sites such as this one and Myeloproliferative neoplasms ('MPN') Voice, knowledge is power and be your own best advocate going forward.
@RubyRose68
Hello Ruby
Thank you so much for getting in touch. Your words have really helped, as have the other lovely people who responded. I will be starting on the tablets this week and as you describe, I am very nervous of the first one! My panic attacks are subsiding & my apoetite has picked up so hopefully I am in a better position to start the medication than I was.
I so appreciate the support. I will come back to this thread and let you know how I get on. Thank you again
