My step father (62 y/o) has just been diagnosed with a high grade glioblastoma. 7 month ago he had a seizure and was diagnosed with epilepsy due to a white mass shown on his MRI. 5 1/2 months later my mother and I found him having another seizure and the follow up MRI showed no difference to the white mass (17th Jan 19), however their was other concerns. Surgery was confirmed for 24th Feb 19 after more texts. Another MRI (25th Feb 19) showed large tumour and more smaller tumours, in a different region; expected to be unrelated. Surgery same day where they removed the large tumour successfully however it had a lot of blood vessels attached. It had grown all in the space of a month. More areas of concern were identified however are in areas they can't get too.
Another MRI due today, then a biopsy Monday to determine what the other areas are.
The deterioration in the week before the MRI was significant. Memory loss, decision making etc. He's just not himself.
The surgeon advised my step dad and mum last night that all the tests have come back negative (not good), and he is recommending the STUPP Protocol (chemo and possibly radiation) depending on the biopsy.
The tumour that grew rapidly was in his sensory pathways, and the surgeon expects more could grow rapidly. Prognosis weeks to a year. Hard to say until we get the biopsy results back and follow up MRI's.
My family is very close and due to my step dad's memory and decision making processes not what they were, we're not sure if he will be able to make a decision on his treatment although we want it to be his. Months ago he entrusted my immediate family members (3 of us) with being able to make a decision should he not be able too.
Both my mum and I aren't sure if we are keen on Chemo and Radiation for him. It seems a bit pointless if your last weeks/months/year are going to be in suffering when we can spend the time doing what he likes and making it enjoyable. My partner's wife died of cancer in her late 20s and had both treatments and he said he wouldn't wish it on his worst enemy; and it did little to prolong her life.
I'm really just looking for some commentary as to whether patients and carers believe that quality of life is better than the treatment, and any suggestions. It's a horrible decision for anyone to have to make so we'd like to go into it, or my step dad go into it, with as much of an understanding as possible. His mother died of a brain tumour as well (different type) and he remembers that the treatment was horrendous and did little to assist. She was about 80.
