Questions to ask - likely HGG / Glioblastoma

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Hello everyone, 

Thank you for taking the time to read this. All your advice is appreciated. 

My best friend (also ex, housemate and we are each others next of kin so I will be looking after him through this - just to add even more complication!) has a likely High Grade Glioma or Glioblastoma. 

He started with a couple of mild headaches in mid December, but thought he was just being overly festive! Then developed a splitting headache and was slurring his words on New Years Eve. After three trips to A&E with a couple of false starts - tension headache? a virus? - he was being sick and forgetting that he had a left side of his body (bumping into things, forgetting to put on his left shoe, or putting his left arm in his jumper), he was finally given a CT scan. He was whisked on to the ward the same night and told that he would have an MRI in the morning and surgery that afternoon. Well it took a bit longer. The MRI happened the next evening and he had surgery to debulk the tumour 5 days later when they had been able to bring some of the swelling down. 

A weird stroke of luck (?) means that we saw the letter from the MRI team to the ward (along with images of the tumour) the day after the MRI (4 days before the op) and this letter said that the tumour is likely a HGG or Glioblastoma. The scan showed the tumour to be 4cm in diameter and shaped like an egg in the parietal lobe (top back right). Despite seeing this the doctors obviously will not formally diagnose before the biopsy and have been unable to give any information about the seriousness of the situation. 

He is recovering really well from the surgery and feels like his old self, apart from not being able to type particularly well. Due to this, and the fact that doctors haven't been more 'dramatic' about the seriousness of things he keeps saying 'they might just need to monitor it now', or 'that might be it for treatment'. The doctor have said that they were unable to get all of the tumour as it had incorporated into other structures... I do appreciate he is in denial and that is probably where he feels safest at the moment. 

He now has an appointment to get the results of the biopsy next week but cannot think about it. I am going with him. I know this is likely to be a very serious diagnosis and require a lot of treatment (I really hope I am wrong but it doesn't sound like it having read a number of other threads and doing other research), so I want to be prepared. 

This leads me to my question. What questions should I be asking the doctor in that appointment? What do you wish you had known about sooner? Anything else you think would be helpful for me/us to know or find out more about?

Thank you so much in advance. 

  • Hi Bearex

    a warm welcome to group. So sorry to hear about all that is going on with your friend. Life's cruel.

    If you've read my other posts/comments you'll have seen I'm not big on advice. I can only speak from my own experience of supporting my late husband through his GBM journey. (The gist of that journey is on my profile)

    As a starting point, focus on what you know or have been told by the doctors. Steer clear of Dr Google as he's a scary dude and you'll have you both dead and buried before you're finished reading.

    Ahead of the appointment write down every and any question that comes to mind. There's no such thing as a stupid question. If its on your mind or your friends mind- ask! These early appointments are quite overwhelming so your notes with your questions on them will help keep you on track.

    G never liked me asking questions at any of his appointments. He was a control freak and wanted to control the conversation even when he couldn't. Denial was also one of his key coping mechanisms. While it can be infuriating to the people around him, I get it. Any diagnosis like this is scary and deep down I know he was really scared.

    You might want to discuss treatment plan, side effects, expectation with regards to recovery from surgery. You might be tempted to ask about prognosis and timescales. Knowing what I know now, I'd be wary of focusing on that aspect. G exceeded every timescale we were given which was incredible but it was hard not to hone in on the timelines the doctors had named. In hindsight the journey would have been slightly easier if no one had mentioned timelines.

    Take this one step at a time. And please take time to take care of yourself too here. It can be an emotional rollercoaster ride for all involved. Taking time for yourself is not selfish. It's essential to recharge your wee batteries.

    This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hand 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 though 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