I have a new haematologist. I saw her face 2 face after my blood tests for Essential thrombocythemia (ET) and explained about my fatigue, body itching and re-occuring night sweats. My bloods are “as good as they can get” according to her - well within normal range so it can’t be the Essential thrombocythemia (ET)! I’m 69 and had a hysterectomy over 20 years ago so definitely not menopause. She is sending me for stomach ultrasound next week to check out my organs and when she examined me there was some pain left side below ribs. Having never examined me before, she said my spleen isn’t enlarged - how would she know? I have another F2F with her in June and I suppose I just want your views on (and this sounds awful I know), does she know what she’s talking about with Essential thrombocythemia (ET)? How do I politely ask her if she has Myeloproliferative neoplasms (MPN) experience as that makes a huge amount of difference and I wouldn’t want to be rude towards her? At the end of the day, it’s my health so I’d like your imput. Thanks.
Hello @Michelle. It’s good to hear from you but I am sorry you are suffering various unpleasant symptoms. I have a different Myeloproliferative neoplasms (MPN) myelofibrosis but when I was originally diagnosed in 1992 my disease had features of Essential thrombocythemia (ET) and myelofibrosis. It was explained to me that even when the disease is relatively stable and the blood cell counts are the best they can be, we can still experience fatigue and itching. Unfortunately they are symptoms of the disease. Regarding your spleen size, I have had mine examined several times by the doctor pressing their hand on my abdomen and there is a way of them knowing through experience where they can feel the edge of the spleen in relation to the ribs etc. That being said, I think you are entitled to ask for an ultrasound scan if you are worried. Do you have a haematology nurse you could contact to express your concerns? I know it isn’t easy asking questions of these medics but I think it is perfectly justified for you to want to know if your haematologist is an Myeloproliferative neoplasms (MPN) Specialist. I hope this helps and I wish you well. Willow x
Hi @Michelle I am so glad that you have posted again.
@Willow has given you a great response.
As for how you ask your new haematologist ‘the question’ that is a difficult one but you are entitled to have a haematologist that you have faith in.
Perhaps the Blood Cancer UK support line might have some ideas on 0808 2080 888.
I attach the Blood Cancer UK website details on Essential thrombocythemia (ET)
Essential thrombocythaemia (ET) - what is it, symptoms, tests and treatment | Blood Cancer UK
You can always ask for a second opinion and ask your GP to refer you, but that does not answer your question.
Please do let us know how you get on and look after yourself