Not treating brain tumour

[Guineapiggiesmalls]

My mum has stage 4 lung cancer which has been controlled by a TKI for the last three year. Two months ago she developed speech and memory problems and was diagnosed with a brain tumour. After a hospital stay, they’ve decided she isn’t clinically well enough for a biopsy and so it won’t be treated. They estimate it’s a ‘high grade gliobastoma’ but obviously can’t say for certain without biopsy.

Today she has been discharged. I’m at home with her not sure what the hell to do next. She has some confusion, forgetting words and names, and on the drive home seemed unsure where we were (despite having driven the road 100s of times herself). She said she was well to go the bathroom alone, and then fell and couldn’t get up making it quite clear that she can’t be left alone at all.

i guess I’m asking if anyone has had any experience of a brain tumour or these type of symptoms and wondering what the prognosis could be? My plan is to go to her GP tomorrow and request/demand some palliative help. I hate seeing my mum confusion and in pain, it’s so far from how she was a few months ago.

Hello.

Sorry to hear about your mother.
I care for my mother in law who also has stage 4 lung cancer. She's awaiting for a head CT to see if the cancer has spread to her brain.
Her constulant said if it's spread there they wouldn't do chemotherapy, and she'd become palliative. So following along to see the replies if you don't mind.

Also forgot to add she's suffering with confusion and bad headaches.

I have a close family member with glioblastoma.

She was diagnosed just over two years ago and is declining rapidly now. She has survived a lot longer than her prognosis.

Speak to palliative care, my family member didn’t want hospice care so is at home which has brought its own challenges. I’m so sorry OP, it is a very cruel disease.

So very sorry to read this OP.

My mum had cancer which eventually went to her brain too. From memory she was diagnosed with the brain mets in the August, I’m sure she had radiotherapy but she sadly passed in the November from a culmination of all the cancer problems.

Given their hesitancy to biopsy then you need to be getting in touch with palliative care / hospice/ her consultant/ GP and try to get some kind of plan in place. She isn’t in a position to be left alone so a care package is needed- how that will look differs from place to place.

If you have siblings or family members to help you then start calling on them now. It’s not going to be easy for you OP so please do make sure you look after yourself as a priority.

Sorry to hear you and your Mum are experiencing this.
My Mum had cancer pretty much everywhere after breast cancer spread. The decline once it affected her brain was extremely swift.

so sorry, it’s an awful thing to go through for you and your mum. My grandad had a lot of confusion, falling over, forgetfulness. The drs said it was a water infection, finally managed to get him seen at the hospital and it turned out to be stage 4 glioblastoma. He deteriorated very fast and couldn’t cope at home on his own and I had a newborn baby so could give him the care he needed. He got a place in a care home and died 6 weeks after diagnosis. Please push for all the help and information you need as it’s very easy to be left in the dark like we were. Definitely try and get some type of plan in place sooner rather than later and always trust your gut and be the voice for your mum if she loses metal capacity like my grandad did.

Thanks for everyone’s input, I appreciate these are sad memories but it does help.

It’s difficult, my mum is adamant about not going into a care home/hospice but my worry is that I can’t handle her care alone. I live 40+ miles away and have two primary aged children. It’s terrible to say, but if this was weeks I would pull in favours for help with the kids to make it work but longer term would be much trickier.

Hi, I'm so sorry - glioblastoma is awful. My mum was diagnosed with it as a primary tumour; she was lucky in that it was operable at the time.
However, due to the nature of GBM (it being a tumour of the connective tissue of the brain) it's almost impossible to eradicate it. Surgery, radiotherapy & chemo will help to reduce it, & potentially prolong life but eventually it will regrow.
My mums tumour regrew within 3 years (but that was whilst still undergoing treatment). She had surgery again but complications occurred which meant she was no longer well enough to undergo further chemo or surgery. At which point we were told she would need palliative care as the tumour would regrow.
She was discharged from hospital in to a care home - neither my brother or I were in a position to look after her ourselves. She was horrified at the prospect, especially as she was the youngest resident but it gave us peace of mind to know she had 24hr care.
She moved in in the March, but sadly passed away in the August.
GBM are usually aggressive & quick so without treatment you definitely need to get palliative care arranged quickly & get Power of Attorney if possible too whilst she is still able to consent.
I'm so sorry.

Your poor mum. I'm so sorry. Did they really just let her go home knowing she'd be on her own? That's absolutely horrific.

If she's going into a care home eventually could she go into one near you so that you could see her every day? That might be more reassuring for her than going into one in her own home area.

Your Mum may be adamant but it will depend on what the tumor affects. If she falls a lot, and doesn't know where she is, chances are she won't be safe at home for much longer. Simple things like going shopping, going to the bathroom etc.
My Mum came to live with me for the last 3 months of her life but I couldn't cope with the end stage and she was cared for in hospital and then a hospice.