Not to mention that "survival" in such cases almost never means "just returning to normal". To continue with the example of glioblastoma multiforme, survivors are almost always left with life-altering effects of treatment. Radiation to the brain can cause irreparable cognitive deficits, dementia, hypopituitarism and other hormonal dysfunction, visual field defects or blindness, seizure disorders, cerebral radionecrosis (an area of dead tissue in the brain), motor deficits and paralysis, and most significantly, secondary cancers. Radiation-induced brain tumors are rare, but they are lethal and usually do not respond to treatment. To go through all of that just to get a secondary brain tumor after years or even decades that kills you in gruesome fashion anyway is a terrible outcome.
I’m very late as usual.
This sounds like the brain tumor I’m seeing in children on Instagram (#glioblastoma). Most of the parents choose the massive steroids and radiation treatments, and the children end up grossly swollen and paralyzed on one side, incapacitated and suffering in their final few months.
The minority of parents choose to forego those devastating treatments and enjoy their remaining months with their children while they are still able to function. Their decline seems to be pretty swift, maybe a month or two at most, at home, compared to the children being subjected to futile interventions who linger for 6 months or more bedridden in pain. It’s horrific stuff.
Most of these accounts are desperate fundraising, as you’d expect, for experimental trials, and you can see the child won’t survive long enough to get there.
I remember one father, working class, a solid guy, he had recently gotten the diagnosis for his daughter, and he said he had searched Instagram for other children to see what to expect, and saw the swollen, half paralyzed kids, and knew he couldn’t do that to his little girl.
I can’t judge the desperate parents, but it’s really gotten me thinking about how we need to do better with educating everyone about end of life care, stop prolonging suffering because we can’t face grief, and stop doing this to our loved ones.
