Being referred for a jak-2 testing

Worried you might have a blood cancer?
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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 :frowning:

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?

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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?!

Personally I’d want a second opinion. I’d say contact PALS and start the process of seeking another haematologist: What is PALS (Patient Advice and Liaison Service)? - NHS

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 :flushed:

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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

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i agree with everything @Duncan has said. definitely get a second opinion and give PALs a call. Let us know how you get on.

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