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Glioblastoma stage 4 - can health decline even though there's minimal tumour regrowth

Wee Me
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Hi

My husband was diagnosed with a GBM4 in Sept 2020 and given a prognosis of 12-15months. I appreciate that these timeframes are guidelines at best and almost 17 months later, he's still here. Physically he remains very fit (he's a marathon runner) and still runs approx 50 miles a week. Mentally he is declining slowly but surely - he gets words muddled up, forgets them altogether, can barely read, can only understand simple instructions and more recently struggles to follow the storyline/plot in films and tv shows. He can be very random at times too. 

We had our 3 monthly call with the oncologist today who says tumour regrowth is stable. It's not increased in size in the past 6 months and they are happy to leave things as they are for another 3 months. Great news...but is it? 

Can his overall health still be declining even though the tumour isn't increasing from its current tiny size (circa 5mm)? Our CNS is not helpful and the team are poor at explaining what I should be watching out for, what I should be worried about etc. My husband isn't interested in finding out. He says he's fine and that there's nothing wrong with him. 

It's such a minefield to try to navigate and with so little information regarding expectations to go on, I'm feeling a little lost today.

thanks

Wee Me

  • Hi Wee Me

    Thanks for getting in touch at what sound like a difficult day and time for you. It’s not unusual to feel a bit lost when you are noticing small changes with your husband but being told that his tumour regrowth is stable.

    Living with a brain tumour presents many challenges. Memory and cognitive changes can happen even with minimal regrowth ,pressure from the tumour or even side effect from your husbands initial treatment .  

    It is good news that the scan appears to show no further growth and that his team are happy to wait a further 3 months to rescan. If his symptoms worsen in that period then please do get back in touch with them to make them aware.

    I can appreciate that it must be hard when you find  the CNS unhelpful and the team unclear about what you should be looking out for. Depending on how you feel it might be worth having a chat with the CNS on your own to discuss your experience.   

    The fact your husband is extremely fit and active is likely to have helped in his initial recovery and may even have slowed down the development of some of his symptoms. We know that people who are active cope better with the physical and mental impacts of cancer and its treatments.

    It is difficult though when the person you love doesn’t want to find things out or acknowledge that there are some cognitive or memory issues. Sometimes addressing that there may be a problem can mean being able to take steps to try and slow down any further decline.   

    The Brain Tumour Charity has some good resources including an App to track quality of life/symptoms in people with a brain tumour. You may have already had a look at their information but it’s worth visiting the site.     

    You’re right that it is a minefield to negotiate, all while trying to look after yourself and no doubt support others as well. You are already doing much better than you think and having days where you feel lost or frustrated by the situation is completely natural.  Using the support via the Online Community is a good thing to do. Looking after yourself as much as you can in the current circumstances is important, take any offers of support and try to make sure that you get some time out for you.  

    I hope this is helpful. If you feel up to it and want to talk things through, then please don’t hesitate to contact us. We are open 7 days a week from 8am till 8pm. Our number is 0808 808 0000. 

    Best wishes and take care,

    Fiona

    Macmillan Cancer Information Nurse Specialist

    Our ref: AP

     

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