Hi everyone,
My Father(70 years) has been diagnosed stage 4 glioblastoma, hi symptoms started in December, a progressive weakening on his left side, his GP diagnosed a suspected full stroke, and made a referral to a stroke hospital 2 for weeks later, the day before they called us and said it was mistake to refer him there, and tried to refer him somewhere else for 1 week later.......I decided no more waiting and took him to the local A&E, CT scan revealed a mass "quite deep" in his brain, he was kept in hospital to wait for an emergency MRI.....this was done 1 week later, a brain tumour was diagnosed last week, the neurosurgeon basically said it was inoperable, the oncology dept have said they won't agree to do chemo/radio without a biopsy result, and basically said he needs end of life care, he is still completely alert, speech and memory are fine, no changes in personality, I was wondering if anyone can tell me if we have any options left? I dont want to completely give up just yet, the doctors are saying he's not strong enough to deal with having the biopsy or chemo/radio, but 6 weeks ago he was decorating his house, never smoked, hasn't drank alcohol in 30years, I just feel that every possible avenue has not been exhausted yet, nobody has mentioned possibly doing a lumbar puncture, any advice amd knowledge from anybody would be extremely appreciated.
Hi Estel
a warm welcome to the group. So sorry to hear about your dad's diagnosis.
My husband (now 52) was diagnosed with a stage 4 Glioblastoma in Sept 2020. His diagnosis came as a bolt out of the blue at that time. He's a fitness freak, a marathon runner and was working as a senior IT project manager at the time. He had surgery to debulk the tumour and then 6 weeks of oral chemo/radiotherapy then in in Jan 2021 said he didn't want any more treatment. A decision I have had to respect. The surgery and treatment were tough on him and his fitness stood him in good stead.
We were given a timeframe but that has long since passed and he's still physically in great shape. He's still running which is a Godsend as that's almost all he has left of his "old Life". Mentally he's declining slowly. His tumour impacted Broca's area of the brain that governs speech language and understanding. It's left him almost like someone with early stage dementia.
Over the months and numerous hospital visits I've come to realise that everyone in this situation is in a unique situation and no two folk have the same experience here. We were told my husband had a " few short months" and yet here he is almost 3 months beyond the timeframe we were given by the team.
It might be worth asking your dad's team if there are any clinical trials that he's eligible for. As my husband has declined all treatment options, I'm not sure what would have been an option to him.
This group has been a great source of support and information for me over the past 17 months. Hopefully there will be someone else along shortly to offer some words of wisdom of their experience.
You could also call 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.
To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section.
For what its worth, they've never mentioned lumbar puncture to us so not sure how much that would show the medical team that they can't determine from bloodwork and imaging. It's probably a good thing for us that they've not mentioned it as my husband is terrified of needles!
Stay strong. Stay positive and be led by what your dad wants here. A glioblastoma diagnosis is a rollercoaster ride of emotions for all involved so please take care of yourself here too.
love n hugs
Wee me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
