My girl friend died of glioblastoma in 2011. She lived almost 3 years after it was first diagnosed.
Here is how it goes:
A glioblastoma is a malignant cancer - this means it tends to grow fast to cause real trouble soon.
The glia cells are not neurons, rather they are structural matter between the neurons.
The specific problem with gliablastoma is that the cancerous cells extend fuzzily beyond the core tumor, and current technology cannot give you images of these very fine extensions. So you can remove the tumor surgically, radiate the remnants - but you will still leave some cancer cells untouched.
In short: You CANNOT remove the cancer completely. It WILL return - 100%.
After surgery and/or radiation (which damage the brain and require medication - cortisols and often something against epileptic seizure; such would essentially be a sort of tranquilizer), you have some time without detectable cancer growth. Chemotherapy is available to stretch that time:
Temozolomide. Before Temozolomide, average life expectancy after diagnosis was just 9 months or so, the agent extended this to something like 16 months.
As a matter of fact, when my girl friend had lived for two years before a first relapse was diagnosed, one onkologist mused whether that could be close to a world record.
Now when there is a relapse, things start getting difficult: The first tumor has been treated with radiation, and radiation is a big burden on the brain. Doses add up. The first round may leave you relatively okay, but the second round will wear you out. In case you survive to experience a third relapse, radiation will no longer be an option, because it would wreck your brain.
What I learned from this:
- Removing the cancer gives you between 6 months and 2 years extra time in most cases, which you can try to use and enjoy. This will be the last good time in your life
- Glioblastoma WILL kill you, and it won't take very long, so do not base your decisions on any hope you might be given 5 years. Senator McCain will NOT see the end of his term
- Wenn the relapses roll in, you'll have difficult decisions to make: Untreated, you will be dead within a few short weeks or months. The first of those weeks or months will be ok, until the tumor starts pushing hard on brain tissue and blood vessels and bit by bit switch of physical and psychological functions. If you decide to treat, you can gain a few months more, but these will tougher sooner, as the treatment decreases the quality of your life immediately, with no certainty you will recover.
My advice to Senator McCain at this time would be:
Finish the political jobs that can be finished within a few weeks.
Retire.
Fight.
But do not fight so much you can't enjoy the little bright things in life.
Get your things in order. Now.
And decide in favor of more quality of life as opposed to more life. It's probably not worth the cost to try to just survive longer.
ETA:
Some ideas of the costs involved:
- I still have one pill of Temozolomide, that my girl friend decided not to take anymore. It's the dosis for 1 month, and it cost 3,500 Euros. Per month.
- While you enjoy the progress-free time, you need to undergo MRI frequently - at least once per quarter, which costs several 100 Euros
- Other medication (cortisols, Keppra...) was not outrageous, I think, though significant, if your insurance doesn't reimburse you
- I don't know that surgery and conventional surgery cost. After the first relapse, we tried a costly, though somewhat experimental radiation therapy with protons. The advantage is that the energy can be better focused in all 3 dimensions, whereas X-rays necessarily damage the entire column ob body matter that's in its path. This cost 20,000 Euros - plus transport, additional diagnostics (PET...) and accomodation at the clinic's guesthouse (we had to travel to Munich, about 500 or 600 km from here, for a week).
I was not directly involved in the finances and do not know the total amount of costs incurred over the 3 years she fought with the beast, but I'd estimate an order of magnitude of 150,000 Euros - luckily largely paid by a good insurer - even the Proton therapy. Chemotherapy was the biggest item.
