Diagnosis & symptoms

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Hi all

I received a call just 2 days ago saying I had a brain tumour that needed further investigation and am currently waiting for a neurology appointment. 

Does this mean I have had the diagnosis? Now just need further investigation for the type etc to be identified? I want to sort some income protection so not sure whether I say I am diagnosed or not??

Also in ref to symptoms - is it usually to have symptoms come and go. For instance my speech is generally slower and I feel like I'm not functioning well but then I'll suddenly find myself more normal for a short while. Also tonight my eyes aren't tired but my neck keeps giving way as though I'm falling asleep...what's going on?!

  • HI HCW

    a warm welcome to the community. Sorry to hear about all that you are going through.

    My husband was diagnosed with a stage 4 brain tumour in Sept 2020 so I can relate to where you are on this journey.

    Thinking back to his initial diagnosis, personally I would say you have had a diagnosis. In G's case, he was initially told that he had a primary brain tumour that needed investigation but at that appointment the consultant told him not to drive etc.  Further scans then surgery to debulk confirmed the stage and type of tumour. 

    With regards to trying to put some income protection in place, I would suggest being open and honest with whatever firm you are talking to. If you don't fully disclose all that you know and they need to complete a medical referral at a later date, you could find your claim is invalid. 

    I had a critical illness policy for G and when I put in the claim against it, the company needed letters etc from the consultant before the claim was honoured.

    With regards to symptoms, everyone is unique. G's main symptoms were inability to speak or to read or understand things but that was due to where the tumour was in his brain. I believe though that from what we have been told over the past few years that the pressure in the brain can cause differences in symptoms. You are best discussing any concerns like that with your doctor as they know what has been seen so far and what symptoms could reasonably be expected. The brain is a very complex thing.

    This is safe and supportive space so please reach out anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer that virtual hug when its needed. You're not alone. We've got you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    For now try to focus on what you have been told and don't think about the what ifs. Steer clear of Dr Google- he's a scary dude!

    Sending you a huge virtual hug and lots of positive energy. Stay strong

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thanks very much  wee me. 

    I appreciate the time you've taken to respond. 

    I'll update when I know more....in the meantime I'll just try and function. I actually think my partner is taking it worse than me so far! He seems to really be struggling. 

  • You're welcome. It's a rollercoaster ride for all involved. I get it.

    There is a group that he might want to reach out to that I've personally drawn a lot of support from and that's Carers only forum - Macmillan Online Community  

    Processing the basic information takes time for both of you and just remember there is no right or wrong way to feel just. All there's thought and emotions are perfectly normal. Be patient with each other and keep talking to each other. You'll get through this.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm