Still don’t understand what it all means

Hi Guys and gals,

I'm new here. After several months of successive infections ( various ranging from throat to sinus to skin) I became very unwell literally overnight in December . 


i woke to extreme pains in my bones , joints , woke drenched in sweat and could hardly move . I felt completely wiped out. This pretty much has been the case since then with the occasional slight reduction in symptoms but always still present . My legs burn constantly now like I have run a marathon . 
 

anyway during the investigations into this matter I was referred to a hemotologist due to a high level of red blood cells. Fast forward to my first appointment with the hemotologist where various bloods were requested and a follow up made for 9 weeks time with the promise if there were any abnormalities I would be contacted .

 

three weeks later ( yesterday ) I attended a routine appointment in a different department of the hospital. The consultant there looked over my notes on his screen and in a blasay fashion said " oh I see they are waiting to arrange your biopsy ". I obviously had no idea what he was referring to and asked what if . He told me it was a bone marrow biopsy and skin biopsy  as my bloods had shown JAX2 exon 12 mutation ?! Straight after this bomb shell he shoved me out the door. 
 

I've had no one to really talk to about this and would appreciate if anyone knew -

- does having a cancer mutation marker be positive mean you have cancer ?
-  why a skin biopsy might be also included as everything I see says this refers to bone marrow disorders not skin?
 

sorry I'm just a little lost ! Thanks in advance 

  • I would ring the haematology secretary and ask for the consultant or nurse specialist to contact you so that you can ask them the questions you need ansews to. The secretary is usually a good point of reference and can advise you where to go next. 
    or got to your GP for explanation and help. 
    The haematology nurses are really helpful and they are usually up to date with the current treatment in their hospital. 
    l hope your appointment comes through soon and your results are good.

    susie

  • Hello Alittlelost

    I'm sorry to hear that you're dealing with some health problems at the moment and waiting on biopsy results. It's understandable that you're feeling worried and have questions especially as the Consultant gave you information but didn't really explain anything. 

    You might want to think about giving our team of nurses a call to talk things through with them. I'm sure they will be happy to offer any advice, information, and support that they can. If you'd like to chat with them they're available Monday to Friday 9 am to 5 pm on 0808 800 4040. 

    We know that waiting for tests and results can be a difficult time so do keep in touch here on the forum to chat with others and offload if it helps. We're here to support you. 

    Let us know how you get on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Thank you so much . I will definitely give them a call. I'm waiting to hear back from my consultant too after ringing the department . Will keep everyone updated ,

    Jenni 

  • So today I had my bone marrow biopsy ... of sorts ! They managed to get the liquid part required at least along with the skin biopsy. 
     

    oh and I found out the skin biopsy is to work out if this is possibly hereditary . Will keep you posted !

  • Hi neylou1

    well I received a call in the week to tell me that the liquid part wasn't successfully collected followed by a call the next day to say it was ?! Obviously more unnessesary upset that could have been done without ! 
     

    my consultant has said she will call when she has the results and I am yet to hear back should be in the next few days hopefully . In the mean time I requested my gp surgery refer me to a different hospital due to the multitude of mistakes thus far  to which they are yet to a agree . 
     

    hoping that things start to fall in to place soon as feeling increasingly unwell 
     

    Thank you for asking

  • I've just had a read of your post too and sorry to hear you are going through stuff too . Always here if you need / want a chat .

    together we are all stronger