Hi, My Mum, who is 70years old was diagnosed two weeks ago with a grade 4 GBM. I have just been to Addenbrookes with her today where the doctor said they couldn’t do anything because of where the GBM is and it’s too risky to operate and any chemo or radiology would also make her quality of life worse, and it’s best to do nothing. I was just wondering if anyone else had been i this situation? Where you are told there is nothing they can do is it really better than taking risks? And what can we expect over the next few months if there is no treatment, as mum has already reduced movement and speech is not there! Thanks for any info.
Hi Smudgersmith
a warm welcome to the online community. So sorry to hear about your mum.
My husband was diagnosed GBM4 in Sept 2020. He was 50 at the time. We discussed the options in depth with the neurosurgeon before he consented to surgery. The neurosurgeon at the time told us he wouldn't see Christmas if he did nothing. He opted for the surgery to debulk the tumour and then underwent 6 weeks of oral chemo/radiotherapy then declined all further treatment offers.
From the start I was warned to look out for seizures, nausea and headaches and told that at the end it would most likely that a massive seizure or stroke would bring things to an end. However, everyone is unique and every tumour has a different impact depending on where it is and the size etc.
Physically he's still in great shape. His symptoms are more mental. A seizure two days before surgery and the the tumour itself impacted his speech/language and understanding. HIs short term memory is more of less non-existent and he can barely read more than a few words. This GBM4 "stole" most of the things that were important to him - his job (he was a senior IT project manager) and his driving licence (He loves cars) and his intellect to an extent.
Recently in a low moment he's confessed to both my son and I that given the choice all over again, he wouldn't have had the surgery or the treatment. That was hard to hear.
There is no right or wrong decision here. Personally I've always been of the opinion that it's quality of life and not quantity. Talk to your mum, talk to her medical team and make sure you have all the information out in the open to allow you to make the best decision for your mum. Write all your questions/concerns/fears down and take those notes to the appointment as they will help to keep you on track. Those early appointments can be quite overwhelming.
This group is a safe supportive space. Everyone gets it and there's always someone around to listen, hold your hand and offer that virtual hug when its needed. I'm sure someone else will be along shortly to add their thoughts .
It’s always good to talk so please remember 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.
Sending you both a huge virtual hug, love and light.
Love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
HI Mypies
hope your meeting today goes smoothly.
Let your emotions flow- its healthier than trying to bottle them all up and deny them. Over the past 22 months I've cried oceans and experienced emotions that I never knew were possible.
Remember to breathe. Take it one step at a time. You will get through this.
sending you love and light and hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
