My appointment was horrible, I saw a different doctor than the last she was so dismissive of me saying that it was basically impossible for me to have TN Essential thrombocythemia (ET) that only those above 60/70s get it, she wouldn’t agree to do the bone marrow testing to rule it out/in, she didn’t give me any blood test results, said I was too young for it to be anything serious. And that it is just “my body” however I didn’t agree to that as this only started 3 years ago before that everything was normal I wasn’t having any symptoms.
She didn’t want to look into the possibility that it was a cancer causing this as haematology is her speciality not haematology oncology.
I guess the good news was I tested negative for the genes, we all know this doesn’t automatically rule out Essential thrombocythemia (ET) just makes it harder I guess.
I felt so dismissed by her because of my age (22 yrs old) and her set in stone thinking that it’s “normal” she ignored all the symptoms I brought up today and in my previous appointment, she ignored what my partner was saying to her, and I ultimately left crying that I wasn’t being listened to and that it was “normal”.
A 22yr old shouldn’t be going through this. My symptoms are bone pain, chest pain, fatigue, frequent infections, headaches, migraines, high bp, rashes (no cause) excessive nose bleeds, easy bruising, purple mottling of the skin, abdo pain and slightly raised platelets between 450-500, the list goes on. I understand not all are Essential thrombocythemia (ET) symptoms but this is not normal I can’t make it through the day without crashing I sleep 10+hrs a night and then a further 3/4hrs through the day just to feel somewhat human.
I’m genuinely at my breaking point the last doctor I saw was convinced I had Essential thrombocythemia (ET) and now to be told I couldn’t have it as my presentation isn’t “obvious”. I’m just genuinely heartbroken to be told this is what we’re looking at then to be told everything is “normal” and this is “just your body” all because I’m young
I’m not sure if anyone will know the answer to this but is there a way I could change my haem? Or get a second opinion?
Oh @Alex217!!! What on earth was that doctor doing?! They are literally meant to care for others having health concerns, no matter our age. What you experienced doesn’t sound caring at all, I’m so sorry you were treated like that.
I am not surprised at all that you were upset and I am so glad you had your partner there to back you up. You shouldn’t need to be explaining to a haematologist of all people that all those symptoms you are experiencing are serious to you. Also, your own blood test results are yours to see so why not let you see them?!
It’s not my place to say but it sounds almost discriminatory how this doctor spoke to you and minimised your health concerns regarding your age. The fact that you also work in this specific field and understand what you’re testing for goes to show how poor this doctor’s care is.
Don’t forget you can call the lovely BCUK fellow nurses and speak with them on 0808 2080 888.
Please let us know how it goes @Alex217. And yes that’s great news not to have the JAK2 mutation, one less thing to worry about so make sure to celebrate that! Wow I just can’t believe how you were spoken to
Oh @Alex217 I am so sorry to hear your appointment was so horrible today/ @Duncan has given you a good response about PALS.
Please do let us know how you get on.
Please really look after yourself and perhaps keep good notes on your experiences
Hey! I know it’s been a while since I’ve posted,but this last month I’ve started to have fevers, worsening night sweats, abdominal pain, we’ve ruled out lymphoma but my haem is still reluctant to do further testing for Essential thrombocythemia (ET), any support or guidance would be amazing.
I have a follow up with infectious diseases end of the month who has ruled out infection/ autoimmune / vasculitus and lymphoma. Would it be worth to bring this up and look further into the potential haem side of this?
Also on my scan in November my spleen was 10cm and on my most recent it is now 13cm I know this is only mildly larger than normal. Has anyone else had spleen enlargement?
Thank you for this reply I’m sorry it’s late I’ve just been processing everything I’ve been going through! I’ve also got written proof that she believes due to my area of work it is making me believe I have this. (Not true at all at the start of this journey I had only been specialised for 6 weeks ).
Is it too late to bring this up to PALS, or can I still bring this up?
I had also been speaking to a few colleagues of mine which also have said the same things you have, which made me realise further that it wasn’t acceptable of her to be discriminatory of me.
Hello there @Alex217, so lovely to hear how you’re doing. Sounds like those symptoms have continued and changed, and your haematologist has not been very attentive or caring. I’m really sorry it’s carried on like this, if I may be so bold—that doctor sounds awful. Time for PALS, I’d say!
I’ve never used PALS but it’s never too late to contact them. Perhaps speak to the specialists at Blood Cancer UK first on 0808 2080 888 to talk through with fellow nurses about your symptoms, what they might mean, and courses of action to gain more control of your health.
Although I bet you’ve got a lot on your mind right now, perhaps try to focus on getting the correct care, meaning the correct tests. As you know, although it’s most common, JAK2 is not the only gene mutation linked to Myeloproliferative neoplasms (MPN) and other blood disorders.
PALS will know how to support you, and I understand that they can communicate between yourself and other departments and even individual doctors. Do tell them about that written stuff. In fact, make sure to be noting down dates and times and descriptions relating to this. I’m glad your colleagues are backing you up.
Good luck with this @Alex217, your health and state of mind is worth the effort! Do please let us know how it goes, try to care for yourself like you would your patients in the meantime.
I had another review with my haematologist team, I had again mentioned the development in symptoms and recent tests results. After crying to him about it all and explaining it , he has offered me a bone marrow biopsy.
However at the end of the call he was laughing which felt a bit condescending as nothing about this was anything to laugh about. This is my life and the symptoms I’m having are real and not laughable.
I am definitely going to explore the PALS route as I think my care has not been taken seriously and the remarks made are unacceptable.
