r/braincancer • u/Skelux • 8d ago
Leaning Toward No Further Treatment
So the quick followup: basically everything I figured out by looking at my own scans was correct. It is speading along my insula, and is right up against the putaman - not real good.
I am faced with a tricky decision with no good answer. The surgeons want to book me in within a couple of weeks and scoop out what they can safely do - but considering the location in the insula, I might end up losing part of what makes me who I am. After that, they want to put me on TMZ+Radio. There is no way a scrawny underweight dude like me is going to tolerate that, I'll have to bail on it early for sure. And even if I somehow got through it all, my quality of life is ruined by stress and side effects, all for the sake of a few extra years overall survival.
I wanted to go on Vorasidenib, but they told me it still costs some kind of insane price (like 60k a month or something). I had been pretty sure Vora was already available under healthcare at a much more affordable price, but apparently not - unless the surgeon was wrong, and the oncologist says something different next week.
Overall, I am leaning toward the side that I never expected I would. Do nothing - no surgery, no meds, no radiation, no scans even. I want to feel like myself as long as possible, and treatment doesn't allow for that. It sacrifices my time and comfort just to buy slightly more time. It feels like I should instead just lull myself back into a state of denial and try to live whimsically as I have been for the past 4.5 years since my first surgery.
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u/Skelux 8d ago
its an O2 in the insula, probably not up to O3 yet, just got really unlucky with the trajectory. My tumor was labelled as "right frontal", but by the time it was discovered was actually also within my anterior insula. Cutting it out will not change the trajectory, and will waste a whole bunch of my precious little time recovering - also possibly causing deficit earlier than otherwise. Even when invaded by glioma cells, the areas of the brain remain active until congestion becomes overwhelming. The part of my insula they would remove is pretty whispy for now, and would have more time to slowly adjust if I just leave it alone. That said, I might have weeks of quality time left or even many years. I do see the occasional anecdote of an untreated LGG behaving itself for a weirdly long time without causing issues.