Can anyone please give me advice

Hi, i went to my doctor in January to have bloods done as i was feeling so tired and my finger tips were burning and i was feeling so unwell and weak. Another round of bloods were done and then more, they said i had enlarged white blood cells and sent specialist bloods to haemotology to check for a mutation and it had taken 6 weeks to get these results. The hospital phoned me on Friday to arrange an appointment with haemotology but said they couldn't discuss anything over the phone. Ive my self worried sick and my dad has only just passed away and i lost my grandmother in October last year. Im 44 year old female, i feel constantly tired and now im so stressed about this appointment. My GP couldn't tell me anything either...... Has anyone any advice ?????? 

  • Hi there

    I noticed no one has replied yet and hopefully someone who has experience in this area will come along soon. It's horrible waiting for results, the mind can go to really scary places, There could be a number of different reasons hematology wants to see you so try not to jump to conclusions.

     Easier said than done but we've all been there I just kept myself busy and focused on the here and now rather than what-ifs.

    Wishing you the best x 

  • Thanks i really appreciate the time you took to reply. Kind regards Elaine 

  • Please come back and let us know how you got on

  • Hello and thank you for your post.

    I am very sorry to hear about you situation and the worry it's causing you.

    While I know that having symptoms and abnormal results is a worry it still does not mean you necessarily have cancer.  Hopefully now a referral has been made to a specialist team you will know more soon. 

    Please try not to worry about not getting any information over the phone. This is because non-medical staff are not allowed to give results or that the policy of the hospital is not to give any over the phone. 

    I am sorry to hear that your dad has recently died and that your grandmother died just last year too. I think knowing this can also make some people more aware of their own health. In the meantime try not to google as it cannot diagnosis but will often cause worry.   

    I hope you have people around you for support and that you hear from the hospital soon. 

    Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care,

    Caroline 

  • Just an update on whats going on. 

    I had my hospital appointment with haemotology and i had an oncologist consultation with the team yesterday. Ive a high white blood cell count and they want to get to the bottom of whats going on. I was weighed, examined and discussed how ive been feeling and had more bloods done. Next Wednesday ive to give a bone marrow sample and have scans and xrays of my abdomen and leave a stool sample. I was reassurred that im young and thats on my side if i need any sort of treatment..... I don't know how I got through yesterday.

     

    God bless you all 

  • Hello there and thanks for posting

    I am sorry to hear you are undergoing some more tests and appreciate this must be an anxious time for you.

    Waiting and not knowing the full extent of what is going on can be unsettling but hopefully you will know more soon.

    I hope you have the support of friends and family around you at this time. Try and look after yourself the best you can and keep you thoughts on other things until you know the bigger picture.

    Of course you can chat away on here as much as you like and if you have any questions do ask them. You are also very welcome to call the nurses if you prefer to talk over the phone, we're here Monday-Friday 9-5.

    I do hope everything works out okay for you.

    Take care

    Naomi

  • Hi, i had scans done on my abdomen and chest

    xray last week. Got my results today, i have essential thrombocythemia. My white blood cells are just over 1000 consultant said they should be around 400. Well that explains the tiredness and pins and needles in my finger tips....

     

    Has anyone any experience of this ?? Its a cancer of the blood ?

     

    Still hasnt sunk in

     

     

  • Years ago i went through numerous tests for polycythaemia (in the same group of disorders, but it involved the red blood cells). The good news, treated properly, people tend to live normal life spans. They can be kept under control for decades, and most people live normal lives. I was told, diabetes type 2 is worse as far as complications and prognosis are concerned.

    I know it doesn't make things less scary at the moment, but you'll be around for decades to come. At least they can now treat it, and you can get back to feeling normal again. Your outlook is good.

    I'm 99% sure there's a large thread on your very condition on these very forums. Maybe someone more savvy with the forums can link the thread for you. It os considered a type of blood cancer, and whilst not curable, it is very treatable.

    Here's a snippet from the official charity site:

    "Although there's no cure for essential thrombocythemia, treatments can control symptoms and reduce the risk of complications. Life span is expected to be normal despite the disease. Treatment of essential thrombocythemia depends on your risk of blood clots or bleeding episodes"

  • Thanks so much for taking the time to reply to my post. 

     

    Kind regards Elaine 

  • Hello and thank you for your post. 

    I can understand that you would want to find out more, given your recent news.

    Essential thrombocythaemia (ET) is a rare blood cancer that causes a high number of blood cells called platelets to form. These cells are involved in blood clotting.

    It is one of a group of conditions called myeloproliferative neoplasms or myeloproliferative disorders.

    We have more information on the diagnosis and treatment of essential thrombocythaemia. Thrombocytosis describes a platelet count that is too high.  One of the reasons for this high platelet count may be the condition called essential  thrombocythaemia but there may be other reasons for a high platelet count.

    Have a read about the information on Essential thrombocythaemia here.

    www.cancerresearchuk.org/.../thrombocythaemia

    The charity MPN Voice provides information and support, 

    https://www.mpnvoice.org.uk/

    This charity is also helpful,

    bloodcancer.org.uk/.../

    I hope that this is useful,

    Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Yours sincerely,

    Vanda