New diagnosis

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My mum has just been diagnosed with a high grade glioma. It's been a massive shock for us all, we are devastated. We don't know a huge amount about it as of yet. We are awaiting the neuro team to have an MDT to establish if they can operate or not. Since a course of steroids, she is completely symptom free. It's even harder to take in now because she is so well in herself. Has anyone else found this? 

I'm petrified googling things but i feel like we are in limbo waiting to know more about what we are dealing with and what treatment options are. We have no confirmed appointments with neuro or oncology, is this normal or should i be chasing this up? 

New to the group sorry but wondering if anyone had a similar experience. Thanks x

  • Hi Welshliz

    a warm welcome to the group. So sorry to hear about your mum. Life's too cruel.

    I've been supporting my husband with his stage 4 brain tumour since Sept 2020 but I can empathise only too well with all the emotions you're going through. Nothing prepares you for hearing such a scary diagnosis.

    Please stay away from Dr Google. I know its tempting but he's a scary dude. Focus on the known facts and take this all one step at a time. Everyone in this situation is unique and every tumour unique. So much depends on where it is, what size it is, what it's impacting if anything at this point, the person's age and fitness...trust that the medical team will look at the whole picture and guide you from there.

    Prescribing steroids in the first instance is common. They help prevent any swelling in the brain. If there's any other medication needed, the doctors will talk to you about that. it's also common to prescribe a drug called Keppra to prevent seizures. 

    The timelines for appointments vary from hospital to hospital. In our case, my husband took a circuitous route- he saw an online GP through work who initially referred to him to our local private hospital. Their first scan identified that there was something there and he was referred back into the NHS system. He had more scans then a few days later the MDT (Multi Disciplinary Team) meeting discussed his case. We then had another appointment for more scans and met the neurosurgeon to discuss the plans. He had an awake craniotomy (that's not as scary as it sounds but scary enough) where they debulked the tumour. This was followed a month or so later, once his scar was fully healed from the op with 6 weeks of oral chemo/radiotherapy in combination. The mass was discovered on 26 Aug, we met the neurosurgeon on 4 Sept, his op was 9th Sept and the treatment plan started on 12 Oct so it was all quite quick. 

    For now though, write down any questions/fears/concerns etc that you and your mum have and take these along to the appointment when the time comes. These initial appointments can be quite overwhelming and emotional. The notes will help to keep you focused and on track. There's no such thing as a daft question here.

    There's lot of information on the main website that may help - here's some links

    Diagnosis | Macmillan Cancer Support

    Treatment | Macmillan Cancer Support

    After treatment | Macmillan Cancer Support

    Supporting someone | Macmillan Cancer Support

    This group is a safe and supportive space so please reach out here anytime. There is always someone around to listen who gets it, someone to hold your hand and someone to offer that virtual hug when its needed. You're not alone. Personally, I've drawn a lot of support from this community over the past couple of years or so.

    It's also important to look after yourself here too. Hearing a diagnosis like this is a huge shock to the system so be patient with yourself. All the emotions you are going through are perfectly normal. I've cried oceans of tears and gone through emotions I never knew existed. It's the strongest and most resilient people who let these emotions show. So please take time for yourself here. It's not selfish, it's essential to help you keep your own batteries charged. 

    I hope this has been helpful If there's anything you want to know, just ask.

    For now though, I'm sending you a huge huge and lots of positive energy. Stay strong. You're coping here so much better than you give yourself credit for. (you'll just need to trust me on that). Remember to breathe.

    love n hugs

    Wee Me xx. 

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

  • Thank you so much for your reply. Just speaking to someone who understands this entire process is really so comforting. 

    I am definitely going in to this now with the mindset that everyone is unique, and will take each day as it comes. 

    Unfortunately we have still not heard back from the MDT and don't even know who to contact to chase things. I have to say the waiting is slowing driving us all insane! It has however given us all time to take things in and digest the initial bad news. I hope it will make us more prepared for the next stages. I've taken your advice and wrote a lot of things down which has helped also.

    Thank you again for your reply, it really means a lot. I hope you are coping ok, i can see you support so many people on this forum, i hope we can support you just as much xxx

  • HI Welshliz

    If you've no direct person to contact, try reaching out through your GP for an update. I know our GP was copied into all the letters etc and they should hopefully be able to see any update on her notes. If you know the name of the neurosurgeon you could try reaching out to them via their secretary and the main hospital contact number. Just a thought.

    Hope you hear something soon. Not knowing is a million times worse than knowing.

    love n hugs

    Wee Me xx

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

  • We had an update a few days ago. Mum is having a biopsy next week as they want to clarify what they are dealing with. I'm hoping from a lesser grade tumour but speaking to the team i think they are thinking a grade 4 based on the MRI. Still unsure if they can operate or not. Trying to remain positive but it hard at this point.

    The waiting around, wondering whether in this time frame with no treatment it will spead is the worst thing ever. A little bit of progress but really we have no idea what will come next. Never knew a week could go so slowly! X