I’m not sure if this is the right place to post this, since I’m new here, but I also thought I should post it here because I’m new here if that makes sense?
Just over a year ago, my then 82 (now 83) year old grandma was diagnosed with a glioblastoma. They said it was inoperable, and radiotherapy may just hinder her quality of life, so she opted not to have any treatment. She was given 3-4 months to live, but asked the doctors not to tell her. She also refused any follow up scans because she just wanted to be able to live the rest of her life free of worry.
She has been taking lionsmane and turkey tail mushrooms (the latter is an approved cancer treatment in Japan) and she’s almost entirely cut out sugar from her diet, as well as cooked fat - although I don’t really understand the benefit in that - and she also cut out meat for a while but we managed to convince her to reintroduce that since her diet was becoming so restrictive.
At the time of diagnosis, my mum was in the ICU with sepsis. My grandma presented with confusion, an inability to get her words out quite right or to find the right words, speaking in drawn out & tangential sentences (which isn’t like her at all), headaches, slight personality change, inability to do crosswords she previously completed with ease, and memory problems. She thought she’d had a ministroke triggered by stress, but when she got it checked out, the person doing her scan blurted out that she had a brain tumour, referred her to the neurological department, and she was diagnosed with a glioblastoma. Her tumour is located very near her pituitary gland which was why they couldn’t operate.
All this to say, over the last year, any symptoms she had have almost completely vanished, apart from the headaches. She’s doing crosswords more difficult than those she was doing before diagnosis. Doctors predicted she’d likely start rapidly declining within 6 weeks of diagnosis. I’m baffled, considering her age, prognosis, and lack of treatment, that she seems better than before she was diagnosed? I’m wondering whether possibly she was misdiagnosed? Although I’ve done some research and it seems as though different types of brain tumours are physically quite distinct, even if their symptoms are similar. The only other explanation I can think of is that the mushrooms are helping in a significant way, and I’m sure they do help, but I would never have imagined they could help to this extent.
Overall, I’m just quite confused and was wondering whether anyone has any insight to offer? She still refuses to get any follow up scans despite us suggesting that the doctors only tell us the results and not her. Anyway, thanks to anyone who bothered to read through my waffle & thanks also to anyone who responds :)
Hi Pepsimaxfangirl,
Welcome to the group and glad you found us. I looked after my wife who suffered from a glioblastoma.
As I understand it the radiologists can never be 100% sure until a biopsy confirms a glioblastoma. So it's possible it was a misdiagnosis though one would question them not being more tentative without a sample to confirm it. If it is a GBM then it is surprising (and wonderful) how well your grandma's doing especially given her age and lack of any formal treatment.
I don't have any insight ínto whether her diet has affected anything but haven't heard that any diet has dramatic effects on disease progression.
Is she worried about it all? It sounds like she just wants to ignore it and keep living until symptoms change and that sounds like a good approach if she isn't anxious. I think those around her just need to keep an eye out for new symptoms and let her GP know if/when they do.
Remember you can 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.
All the best and hope she stays symptom free for as long as possible,
Chris
HI Pepsimaxfangirl
I'd like to echo Chris' warm welcome to the community. Sorry to hear about all that is going on but I can empathise with your grandma's choice.
I supported my late husband through the 3 years of his GBM journey and to be honest denial was one of his key coping mechanisms. He too just wanted to live his best life and he did right up to the last few days. (You can read the gist of our tale in my bio)
I understand that you and rest of the family want to know more. That's only natural but knowing brings its own stresses and strains and the medical profession don't always get the timeline right. Take each day as it comes and be led by your grandma. I'd echo Chris' advise to report any changes, however trivial to the medical team. My rule of thumb was always if I was worried about something, I'd call it out to the medical team.
Please make sure you take care of your wee self here as supporting someone on this journey is a real emotional rollercoaster ride.
For now though I'm sending you a huge virtual hug and lots of positive energy
love n hugs
Wee Me xx
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