Recent diagnosis MPN ET

Recent diagnosis
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Good Morning,

Well I am on here today after being diagnosed with Myeloproliferative neoplasms (Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN))) Essential thrombocythemia (Essential thrombocythemia (Essential thrombocythemia (ET))) after many months of not quite feeling myself and just putting it down to perimenopause , I’m 54. It’s been a strange time as my symptoms were similar to other conditions such as general fatigue, brain fog, irregular bleeding, constant bruising, vision issues and lots of other things but due to my age just thought it was all part of PM plus my mum was diagnosed in March 2025 with lung cancer so I’ve have been supporting her as I am her only living relative so just presumed some of the way I was feeling could also be stress and anxiety as she was initially told she was stage 4 then informed by a letter she was stage 2, she has her scan results on 13th January to see if it has spread or not but she has complex pain issues due to the location in her lungs etc so that it itself for me has been difficult to navigate and watch my parent suffer and be very negative has been hard. Anyway back to my diagnosis it’s only after routine bloods for my thyroid and a new registrar at my surgery who listened to what was happening to me that I was put on the pathway for suspected cancer as the doctor had missed elevated platelets in 2024, so after some scans and further blood tests it has been concluded I have Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) Essential thrombocythemia (Essential thrombocythemia (ET)) which I hadn’t heard of. I have to take aspirin daily and will be monitored every 3 months but told I can live normally and as I am under 65 seen less of a risk. I told my husband and my own children and also mum who hasn’t taken it well. The response from my husband and children was one of more “oh well you can still live your life”, no sorry or emotion so I feel a bit upset is this normal, I haven’t really processed it myself anyway. Any advice please as I feel this is going to be a very lonely place, as I don’t really like to burden people and now feel like my own family don’t even care about my diagnosis at all. I’m I being selfish?

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Hi @JayneSparkle, welcome to the forum, and thank you for sharing what you’re going through. I’m so sorry you’re navigating both your Essential thrombocythemia (ET) diagnosis and your mum’s lung cancer treatment at the same time - that’s an enormous amount to carry.

First, you are absolutely not being selfish, and your feelings are relateable and valid. A blood cancer diagnosis is significant, even when it’s a condition that can be managed well like Essential thrombocythemia (ET), and it’s natural to need time to process what this means for you.

Sometimes when loved ones hear reassuring medical information like “you can live normally” they focus on that because they don’t quite know how to hold space for the harder emotions, or they think staying positive is the most helpful thing they can do. Even when well-intentioned, this can feel dismissive of the very real impact this has on your life - the three-monthly monitoring, the anxiety about what this means for your future, the adjustment to living with a blood cancer. You’re allowed to feel upset, scared, overwhelmed, or anything else that comes up.

This community is here for you, and many of our members have Essential thrombocythemia (ET) or other MPNs, and they understand what you’re going through. You’re not burdening anyone by being here - that’s exactly what this space is for. I’m hoping those with direct experience will weigh in soon.

I’d encourage you to explore the forum a bit when you feel ready. If you scroll down to the bottom of this thread, you’ll see a “Related” section that shows other discussions that might be helpful - there are quite a few threads from people with Essential thrombocythemia (ET) sharing their experiences and supporting each other. You might find it reassuring to read through some of those.

You might also find this Blood Cancer UK webpage for those newly-diagnosed helpful, plus we have some resources around how to look after your mental health when you have blood cancer, including this article.

And, of course, the Blood Cancer UK Support Services team is also here for you. You can reach us on the Support Line (0808 2080 888) or via email on support@bloodcancer.org.uk

Take very gentle care of yourself and please do keep posting,

Ceri - Blood Cancer UK Support Services

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Hi Ceri,

Thanks for your reply and reassurance. I will keep myself well informed using this site and I’m grateful there is such a space to discuss bc topics as obviously there are different variants and people on the forum will be at different stages of their journey at least I know I am not the only person with such a condition now.

Thanks again.

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Hi @JayneSparkle I am so glad that you have found our support forum and had the courage to post so honestly.

Gosh what a difficult time you have been going through supporting your mum through her lung cancer diagnosis, no wonder it has been difficult for you both to navigate.

What did resonate with me and I wanted to say is that personally I do not think that there is a ’normal’ way people respond to their own or someone else’s diagnosis. It is completely individual. In my case my husband is a kind of head in the sand type of guy and does not want to know. I was diagnosed with another blood cancer 22 yrs ago and he has never mentioned it since. My grown up son just takes it in a matter of fact way. This can feel a very lonely isolated place to me and that is why I value our supportive forum so much. Although I admit to feelings of envy when I read the support others might have. I also have some very good friends if I feel the need for support. It is often safer to stick to facts than face painful, scary emotions.

As you say you have not had time to process it yet so it might be the same for your family and friends.

Nobody has a manual for these situations and nobody knows how to feel, be or say.

So you are not being selfish, I have found people understand me on here.

Give yourself time to process your diagnosis and be ever so kind to yourself and you are now part of our forum family so keep posting.

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I am sorry you have to face this diagnosis and your mother’s cancer journey at the same time.

It is good you have found this site. I have found it very helpful as I have learned to deal with my diagnosis of Essential thrombocythemia (Essential thrombocythemia (Essential thrombocythemia (ET))), as I have learned to be proactive when meeting with or speaking on line for my regular appointments, and as I have learned how others deal with the condition. I think there are several people who have had to cope with a lack of support, and who have found it helpful to be able to say things here that they would not be able to easily share with uncomprehending family or friends.
It is good to be monitored every 3 months. It has been very reassuring for me to have that supervision. Don’t be afraid to ask questions of the Haematology consultant, or the support nurses. Write questions down as they come to you so they are ready for your next visits. I am not sure my haematologist always appreciated my questions, but I asked them anyway.

All the very best for you as you negotiate your life and your condition, and as you support your mother.

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Thanks Erica,

I get that people have their own way of dealing with things and I need to focus on myself and not worry about the responses of others I was even in two minds whether I tell them as both my adult child are navigating their own lives anyway and didn’t want it to become a burden to them as it’s such an unusual and rare disorder, I already have hypothyroidism so I am just going to treat it in the same way as that, I am aware of my limitations so for now I am going to focus on the positive aspects and be thankful for every day and hope that I can live well despite this. It’s good to know that other people have been through similar with their families. I just think the whole thing is a bit daunting and surreal atm and doesn’t make sense. Any advice is welcome.

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Yes thanks it has been a difficult with my mums diagnosis as well as my own which I just need to get my head around. I don’t usually use forums but thought it would be a good place to start and I am already grateful for any responses. Thank you for replying. Although I have been told I can live relatively normally I am worried now about going abroad or driving long distances. Has this affected anyone?

I think it’s about just staying positive and knowing your limitations right now and doing things you enjoy.

It definitely puts life is for living into perspective.

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Hello there @JayneSparkle, welcome to the forum. I’m really so sorry to read of what brought you here but am very glad you found us. Like dear @Erica, @Ceri_BloodCancerUK and @Modesigns say, you’ll find many of us around the forum who live with Myeloproliferative neoplasms (MPN) like Essential thrombocythemia (ET) and Polycythaemia vera (PV) and I hope over time you’ll also find we’re a resilient bunch who can lead mostly normal lives.

That sense of being understood by others may not help so much when feeling understandably anxious about all this though. I’d not heard of the Myeloproliferative neoplasms (MPN) I was diagnosed with either, in my case Polycythaemia vera (PV), and it felt like a steep learning curve. I’m not medically trained so all the blood cell language and haemo- this and thats were a lot to take in. But I promise it starts to make sense and we can come to feel at ease with what all our blood testing shows.

While different to your situation with your mum, I first heard of Essential thrombocythemia (ET) as a close family member was diagnosed with it. Because they were going through a difficult time with their diagnosis, when my own came without the same sorts of issues I felt so guilty. It actually set me back a little with tolerating my own diagnosis as I felt like I was somehow cheating by having a more optimistic prognosis.

I’d say try to think of your diagnosis and life ahead as separate from what caring for your mum brings up, hard as that may seem. We can care for others but also care for ourselves, and perhaps we can only really care for others if we are putting our immediate needs first. Being both a carer and person needing care is a tricky balance, but it isn’t selfish to think about one’s own needs, especially at a time like this.

I’ll be brutally honest and say that after my own diagnosis I experienced pretty disabling fatigue brought on my hydroxyurea treatment. This took a few months to settle down and fade, and I had to cancel travel plans as my brain was so foggy that I couldn’t think logistics through. It might be the case that you need a bit of time to acclimatise before taking long trips, but you’ll be able to gauge it. Perhaps your family and friends can be on standby to care for you should you need it, like you care for your mum?

Often I have to advocate for myself as these Myeloproliferative neoplasms (MPN) are sometimes thought of as “invisible” types of cancer. We can be out in the world and others may never even know the fatigue and other symptoms we’re dealing with, so sometimes we need to ask for what we need.

I’m still practicing this 3 years on from diagnosis, but it gets easier! Just this weekend I ended up cancelling plans with friends from out of town as they kept changing meeting times, places, and seemed to forget that we needed a dog-friendly outside place where I could avoid people sniffling more easily too. Next time they’ll maybe plan better with more consideration!

Anyway, do take a look around the forum @JayneSparkle and you’ll soon find many others like ourselves living well with Myeloproliferative neoplasms (MPN). Maybe consider calling the lovely BCUK nurses as they are specialists in what we’re living with and can offer great support and advice.

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Hello again @JayneSparkle , I went to sleep momentarily in almost stationary traffic on the M25 perhaps about two years before `I was diagnosed with Essential thrombocythemia (Essential thrombocythemia (Essential thrombocythemia (ET))). Saved by the lane markings! I found myself having to go to sleep immediately in some situations. Then, after going on Hydroxycarbamide, I reasoned it was best to have the medication at night so I could just go to sleep. Sleepiness is a side effect of the medication, but I hadn’t realised it was sometimes a side effect of the condition as well. Driving could be a problem for me, but I just allow more time, and take breaks, and drink plenty of water. I factor in that I may be tired after driving any distance, so may need more rest or slow days

You will find you can do most of what you already do, but may have to make a few adjustments. I am 79, have been diagnosed for 3 years, began teaching a fortnightly 5 hour botanical art class a year ago, and continue to do occasional classical singing teaching.

Six months after my diagnosis I had those daunting, surreal feelings. I was prescribed the Hydroxycarbamide and the consultant wanted me to go on it immediately. I wanted to finish my term of singing teaching and was about to look after my grandchildren for 3 weeks. the whole situation was totally overwhelming, so I decided to wait until 3 months later before taking the meds. The platelet levels increased, and I knew I had to bite the bullet, but I felt glad that I had allowed myself the extra time in which to get my head around all that was happening.

I was also encouraged by a student in her fifties who had a similar blood cancer which presented very early, in her 20s, when she had a stroke. She is now living her best very full life in another country.

I want to make another long journey to my family NZ. It would not be the blood cancer that stopped me. I have had two other cancers requiring surgical interventions, and sadly resulted in lymphoedema, due to the removal of lymph nodes. That is under control, but could cause major problems. I have yet to decide!!

I agree, it definitely puts life is for living in perspective!

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Bless you sounds like you’ve had a few hurdles along the way and are still enjoying life and doing amazing things.

That’s what I’m going to try to do until I can’t which I’m hoping will be a long time off. I think it’s just scary when your hear the ‘C’ word.

I do find not sleeping a big thing as I have night sweats, which makes me feel exhausted and moody thankfully I only work part time so get time off to rest.

I think it’s about staying positive too.

Thanks for your encouragement.

My nanna used to say keep taking the pills and riding the bicycle xx

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Wise woman your Nanna!

If there are things, or even something you have always wanted to do, now is a good time to think of how you may do it.

Is it the thyroid issues that give you night sweats…or is that actually menopausal?

All the very best to you. XX

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Thanks so much. Not sure if it’s my bc that gives me the sweats as read can also be that so who knows, lack of sleep just wears me out and has done for about 3 years now so I’m surprised I can function at any level but I’ve managed to keep going so far so hoping I’ll be ok for now. I guess I’ll have to learn to live with it for the foreseeable.

I like to look forward to new things too xx

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Hello I’m really sorry you’re going through so much at once — your own diagnosis on top of supporting your mum through cancer is an enormous emotional load for anyone. You’re not being selfish at all. A diagnosis like Essential thrombocythemia (Essential thrombocythemia (ET))/MPN (Myeloproliferative neoplasms) (Myeloproliferative neoplasms) can be a real shock, especially when you’re only just starting to process what it means.

I was diagnosed with Essential thrombocythemia (Essential thrombocythemia (ET)) in June 2024 and had very similar symptoms — fatigue, feeling unwell, brain and vision issues. The early period was the hardest for me emotionally, particularly when people around me didn’t seem to react in the way I expected. I’ve since learned that family often focus on the “you’ll be fine” message as a way of coping themselves.

Things have settled for me, with treatment (hyrdoxycarbamide) and monitoring. I have been able to get back to a full and active life. It does take time — both physically and emotionally. I had lots of questions at the start, it could help to speak to one of our Support Services Nurses on [0808 2080 888](tel:0808 2080 888).

You’re not alone in this, even though it can feel that way right now. Be gentle with yourself and give yourself permission to feel what you feel.

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Thanks I think like you say I have a lot going on supporting mum and her situation hasn’t got any better unfortunately. My diagnosis was a big surprise but at least an answer to my symptoms as I thought as I was going mad. I think my family have had time to think and have asked me a few more questions since my diagnosis last week which was probably a shock also to them as I guess they just thought it was just normal woman’s stuff due to my age etc. I get the impression everyone is managing to live a relatively normal life which is a positive to me so I am hoping I can get away often and enjoy my life. I am just grateful a few people have responded and given advice on the subject.

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Don’t hesitate to ask questions of the consultant or the Haematology nurse team. It is a possible bc side effect, and I get asked routinely about it, but it is also a side effect of other things, so worth asking your GP and the Consultant.

I am glad your family have rallied around and are asking questions. It will be a shock to you all, and does take time to come to terms with. All the very best to you and your family.

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