Mum has brain tumor

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Hi All,

I'm Nikki, in my 30's, 3 kids aged 13, 11 and 7. My mum is Sarah, 59. 

Mum went into A&E on the Fri 19/04/24 thinking she'd had a mini stroke (words slurring, face slightly dropping, intense headaches) She was in hospital for a week and had all sorts of tests (I'm struggling to recall what - at this time I wasn't making notes as didn't quite know what was going on!) including MRIs, tests carried out showed no stroke, but a lesion on the frontal lobe, after further scans we were told on the Tue 23/04/24 that it's a brain tumor/cancer.

Since then we were told that we'd have an "action plan" on the Fri 26/04/24 (she was discharged this day too) which was then pushed back to Mon 29/04/24 due to not having all the test results back. 

At the appt 29/04/24 (I was in the meeting via video call and didn't catch everything) they said: Brain tumor; Grade 3/4; 3x3cm. 

Two options : 'big op' take as much out as they can and then chemo or 'small op' take biopsies and treatments to "manage" it.

They needed to do further MRIs to see if it's in an area that would impact on her speech 'area'. Apparently because she's left handed her brain could be different and if the tumor is in the 'speech area' they won't be able to do the 'big op' as it would cause too much damage.

MRI scan booked for tomorrow 03/05/24 so they aren't messing about.

Wondering what the likelihood is that we'll find out more tomorrow at the MRI?

At what stage do we get a prognosis as such? After the op? 

Thanks, Nikki x

  • Sorry to hear about your Mum Nikki. It seems she is receiving attention from the specialists, which is great. I can relate to the process she has gone through. I am also left handed and had a sudden siezure  2nd January last year and surgery a month after. 
    From my personal experience I have not received immediate feedback from MRI’s. In my hospital decisions on operations are made by a team made up of radiology, neurology and oncology. I had an MRI last week and don’t expect a definitive response for 2 weeks from the scan. It would be quicker if surgery or treatment is required - but that decision is not made by the radiology team that takes the MRI. 
    The process for your Mum will be decided by your specialists and she seems to be in good hands. Best wishes to all of you in the coming days and weeks. 

  • Hi, thanks for your response.

    As I expected, no news today. My mum was holding out hope convinced she'd know today, now it's likely to be Tuesday - so got to try to keep her distracted whilst we wait.

    She's still convinced she'll be in for the op next week, so I think il try to drop in the idea that it's likely to be longer. 

    We'll keep plodding....

  • HI Nikki

    a warm welcome to the online community. So sorry to hear about all that has been going on with your mum. What a whirlwind few weeks you've had. I hope the scan today has gone smoothly.

    I spent just over 3 years supporting my late husband through his stage 4 Glioblastoma journey and the memory of those initial scary weeks will live with me for a long long time. (You can read the gist of our tale in my bio).

    Ok first thing I'm going to say is breathe. Pause and take stock. You have had a huge amount to process and please don't underestimate the toll this is taking on you.

    With regards to future appointments etc can I suggest that ahead of the appointment you write down all your questions/fears/concerns and your mum's and take those notes with you. There is no such thing as a daft question so ask them all. Use the notes as a script to make sure you don't forget to ask something that is important to you both. If you don't understand the answer, ask for clarity as these early appointments as your discovering are completely overwhelming.

    Stay away from Dr Google. He's a scary dude! Focus on what your mum's medical team are telling you as they are ones best placed to give you the relevant information.

    In G's case, he had a scan on 26th Aug 2020 that confirmed a primary brain tumour in Broca's area of the brain. Initially the plan was to biopsy but we learned on 2 Sept 2020 (our silver wedding anniversary) that the MDT meeting had decided to skip straight to , as you put it , "the big op". We met the neurosurgeon on 4th Sept and he said that day that he was 90% certain it was a Glioblastoma. Surgery was arranged for the following week and a week after that we got the full diagnosis/prognosis.  

    As time went on there were maintenance MRI scans every 3 months and we had to wait 2 weeks roughly for the results of each of those.

    Prognosis is one I personally struggle with, largely because G blew every timeline out the water. Focus on how your mum is physically/mentally and try not to think in timelines. Everyone is unique so there are no hard and fast guarantees with any of the timelines a doctor may give. We were initially told 12-15 months but in the end we had 3 years 2 months and 1 day.

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

    If there is anything else that you want to ask me please drop me a message. Happy to share my experience with you.

    For now though I'm sending you and your mum a huge virtual hug and lots of positive energy. Stay strong and take this one step at a time.

    love n hugs

    Wee Me xxx

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

  • Hi Nikki, 

    Follow the wise and kind words of Wee Me, who continuously posts and helps everyone on this site.

    From my own experience, even after the specialists have reached a conclusion on the best course of action and fixed a date, I had a week of going in to the hospital- 2 separate MRIs, blood tests, pre-op checks before surgery. You are right to emphasise to your mother that the operation might not be next week. You are in the hands of experts so let them draw the best actions and then act accordingly. In between these medical meetings and events, do your best to relax and enjoy time together. I do realise it is easy for me to write these words and sometimes very hard to achieve them. 
    best wishes for a positive clear meeting next week. 

  • Hi everyone, 

    Thanks so much for your replies.

    Mum being mum, it's been another few whirlwind weeks. 

    We went for the MRI on the 3/5/24, in hospital the 7/5/24 for anaesthetist appt and heart scan and she was in theatre the 8/5/24 with less than 12hrs notice, for "the big op" as the tumor wasn't on her speech "area" - we didn't even know what they were going to be able to do until she was there that morning. Mum got out of hospital on the 12/5/24 - and is recovering incredibly well - we are amazed!

    We've found out today 17/05/24 after the MDT meeting that they're going to do radiotherapy (3-6 weeks 5 days a week) and likely to do chemotherapy too - a tablet apparently that can be taken at home? We are now waiting on a date for an oncology appointment where we should find out more/get details for the treatments.

    Mum knows more about the type of cancer but won't tell me and isn't interested in finding out prognosis ect. 

    My mind is still very much frazzled.

    I'll have a look at your blogs Wee Me - thank you.

    Nikki x

  • Thanks for your reply. We had no idea that being a lefty could cause such a fuss Rofl but thankfully the tumour wasn't in that dodgy area, so they've 'chopped it all out' as my lovely children have taken to saying! 

    It certainly seems like Mum is in very good hands, and things are happening at quite the pace!

    I feel like I've lived a year in the last month, but Mum is so positive, which is massively helping her - and in turn helps me. 

    X

  • Sorry to hear about you and your Mums situation. It sounds like you’re in good hands and they acted decisively which is great to hear.

    it sounds like your Mums a positive person who’s going to face it head-on, but I just thought I would post to let you know that other treatments are available outside of radio and chemo. I decided to go an alternative route after being diagnosed with a grade 3 brain tumour in 2021. I had surgery which removed 70%, and then radio, I then went down another road for treatment.
    I’m limited to what I can say here, but if you ever thought about going down that road, you’re welcome to send me a message to discuss it further. 

    Good luck to you and your family.

    Aaron

  • It's a glioblastoma, grade 4.

    She has been told prognosis ect. 

  • Mum starts treatment on the 19th. 

    We had an Oncology appt on Tues 4th where they originally said they'd offer 6 weeks of chemo and radiotherapy, they were happy for us to push the treatment starts date back if we booked a holiday. 6hrs in the hospital, struggles to get cannulas in for CT scan dye...

    Phone call the next morning with a change of plan, consultant doesn't want to delay and they're offering just 3 weeks of radiotherapy/chemotherapy - mum didn't think to ask why(!?) 

    Mum has gone down hill this last week, even more tired than she was, mobility is tougher too. They did reduce her steroids (I think) down to 2mg instead of the 4mg she was on (again, I think that's right - everythings a bit blurry for me ATM) so I'm going to ask about that when we are back in next week.

    Next week is hospital every day! 

    Monday - chemo appt to talk us through everything, blood tests, prescribe the chemo tablets

    Tuesday - collect the chemo tabs

    Wednesday - Friday - treatment! 

    I'm exhausted already just thinking about it, and I'm just there for support. 

  • If I may make a few comments. I’m well aware of all these challenges having gone through your process. I think the chaemo/radio helped me so stick with it. Every consultant meeting my wife has our questions written down - which helps us cover all points.

    I found that if I took the chemotherapy tablets with anti sickness pills on an empty stomach just before sleep, then the side effects were more limited. I still slept ok and was less tired during the day. This was checked with our consultant, who agreed - saying it was important just to take at the same time every day.

    Best wishes for the coming weeks.