New brain tumour diagnosis

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Hi there, my mum started acting strangely a month ago - very quiet, reduced concentration, not wanting to eat, text messages not making sense. She was then found having collapsed and has been in hospital for 10 days with an initial diagnosis of brain tumour.

She can still speak however she can’t hold concentration for more than a sentence of a few words. She is also now incontinent, her eyes can’t hold focus for long, and she has started referring to her mum and dad, both who she lost over 4 years’ ago (almost dementia like symptoms).

Is there anyone else who has a loved one who has had a sudden brain tumour? Every post I read is about people who haven’t experienced such extreme personality changes in such a short space of time.

the tumour hasn’t been classified yet although they think it’s a malignant glioma.

Honesty is much appreciated as I’m conscious things don’t look good right now.

  • Good evening my name is Graham I am sixty years old. About five years ago I had the same sorts of symptoms lost speech, being sick so not wanting to eat, very unstable loss of concentration and remembering people. All I can remember after three months plus in hospital all the family gathering around bed, consultant arrived and give three months to live. That is only thing I remember, son and now x have shown me pictures etc. My memory has been lost for about the last 15 years, hearing effected walk with a stick. But on the positive note still hear well past the three months, because my x left living in me flat, cooking etc. Get a vist from a company called Home Instead, to make sure i am alright. Now they make coffee and we have a chin wag. So I am so sorry for you but they’re good be a positive outcome for you. Hope you don’t mind me contacting you with my story, I hope my story from someone who been affected by this horrible disease, give you a plus for your positive thinking. Here wishing al your family good positive thoughts. My family are the ones who keep me going now. My family tells me they had to fight to get answers from the doctors. At one point my wife refused to go at the end of visiting hours. The consultant was in a emergency operation, within thirty minutes of her refusing to go, he turned up at bedside. I cannot remember the name of cancer, live has changed but with love from kids and grandchildren I’ve started a new chapter.

    Best wishes if you want anymore information or just a chat give me a reply.

  • So sorry to hear what you’re going through. I hope you’ve got people to lean on - whatever happens from now on, this month must have been a rough ride. 

    My father was diagnosed with a GBM ten years ago and went very quickly downhill, losing connection with the people around him and his surroundings, and dying quietly and painlessly in bed six months after the diagnosis.

    Then two years ago I had a focal seizure and was diagnosed with a stage 4 astrocytoma (which a few years ago would have been classified as a GBM). They removed most of it during surgery, followed by chemo and radiotherapy, and two years later I’m getting regular scans but am feeling fine, and the tumour is currently stable.

    So.. each tumour is different, each patient is different, and you don’t get guarantees. But I wish you and your mother well and I’m happy to try and answer questions, or just listen

    xxx

  • HI Jessica

    a warm welcome to the onlline community. Sorry to hear about all that has been going on with your mum.

    My late husband was diagnosed with a stage 4 brain tumour (Glioblastoma) in Sept 2020. His diagnosis came out of the blue. It all started in late July 2020 when he was out running and realised that he didn't know the word for pavement and then that he didn't know any words. He kept running for several more miles and gradually the ability to recognise words came back as he read the names on the parked cars. 

    He had scans in Aug 2020 and a primary brain tumour was identified in Broca's Area of the brain that controls speech, language and understanding. It was the size of a golf ball. He had a seizure 2 days before his surgery to debulk the tumour and to be honest was never the same after that. (The gist of our story is in my bio)

    Over the next three years his personality did change quite dramatically and his symptoms were more dementia like than cancer. He retained his long term memories up until the last few weeks but his short term memory was poor to non- existent from early on.

    Any brain tumour diagnosis is scary and over-whelming. Please steer away from Dr Google and focus on the facts that your mum's doctors are telling you. They are the ones best placed to advise you as they are closest to the details. In G's case, introducing steroids helped his general condition for a few months last year but they come with their own side effects. (They made him nasty and we was eating everything in sight!)

    I hope you get some definitive answers soon because not-knowing what you're dealing with is a thousand times harder than coping with the eventual diagnosis.

    This community is a safe and supportive space so please reach out here anytime. As you've already seen there is always someone about to listen who gets it, someone to hold your hand and to offer a 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 I'm sending you a huge virtual hug and lots of positive energy.

    love n hugs

    Wee Me xx

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