Another tired question amongst the online brain cancer support groups I frequent is, “Why bother with treatment, if there’s only a 5% long-term success rate?” Similarly, there’s “Why bother with Standard of Care treatments with such miserable statistics?” That last one was grounds recently for a benevolent and misunderstood health insurance company (Aetna) to refuse radiation treatment costs as “experimental” in Oklahoma. The jury awarded the patient’s family $25.5 million after hearing about how alleged physicians working for the company spent more time preparing for trial, or passing paperwork to refuse paying for treatment, than they did evaluating its efficacy.
As I’ve discussed in previous articles, according to the British Medical Association Journal, “medical error” is the third-leading cause of death in America. Heart disease and cancer are the first and second-leading causes, respectively. Which means, if you’re a chronic cancer patient who’s frequently in hospitals and subjected to chemo and radiation (which are extraordinarily bad for vascular health), it can feel like you’re in some nightmarish race to see what kills you first. Again, though, context is everything.
If you go into a hospital with a broken leg or appendicitis, the ER doctor and surgeons are, statistically, more likely to kill you than your maladies. And, yet, if you break a leg, or have acute, sharp abdominal pain lasting more than 12 hours, you’d be a moron not to call an ambulance or head to the nearest hospital. This is because, grim as statistics may be, and helpful as they may be in planning and evaluating treatment options, we know what happens if those things are left untreated. You either die, or end up permanently crippled. The risks — and complications — of treatment far outweigh the risks of not treating a condition.
And, with cancer, it’s not like you’ll live whatever the median life expectancy is, then drop dead. You get progressively worse — far, far worse — until you die. It’s horrible, but almost all cancer treatments are similar to how one of my professors described the use of violence by repressive regimes — you hit it (and yourself) again and again and again, until either you or the disease gives up. You don’t want to be second in that race.
With regards to “incurable” cancers; even though I’d advocate for Standard of Care (SOC); I’d also advise immediately looking into experimental treatment options immediately upon diagnosis. I base that recommendation on two things.
- We know SOC is not enough, because, if it cured the disease, the disease would not be considered “incurable.”
- A lot of clinical trials have inclusion and exclusion criteria, and, just as physicians will call off treatment if they don’t think you’ll survive it; drug (and, increasingly, biotech) companies don’t want people who aren’t likely to survive the rigors of an experimental treatment, and you don’t want to wait until you’re in dire straits before submitting the paperwork (on the flip side; you can use this to your advantage if they catch your cancer early and power through treatment; after 41 infusions over 54 weeks, my first question to my oncologists was, “When’s the next treatment cycle start?”).
All of which piggy-backs on to my on-going message that, even though there are many things you can do to help improve your odds or make life in chemoradiation less-miserable, do not accept any non-medically-endorsed treatment in lieu of treatment.
May is Brain Cancer Awareness month. If you’re reading this, you’ve heard from at least one person who’s made it through the abyss and outlived their life expectancy.