There’s Something Terribly Wrong With How We Look at Cancer Survival Statistics

We all know the story. We’ve seen the Lifetime/Hallmark special in which inevitably features cachexia. We get to see the poor patient lose all agency and slowly wilt and die, like a pointsettia plant we got from the neighbors at Christmas. Or there’s an instantaneous, miraculous turn-about or misdiagnosis, and the poor patient is granted a new lease on life. Neither of these is accurate, of course, and the horrible truth of cancer is that surviving it is like that first, terrible full-time job you get out of college: it’s just a grueling slog with a cruel boss that somehow actually costs us money. Which isn’t terribly exciting or dramatic, which is probably why we don’t see the survivor fumbling through their pills, crawling after that one that gets away, and, after finding it in a dank bathroom corner, swallowing it anyway after realizing it’s a $70 co-pay (immune suppression be damned).

Another favorite narrative we love to see about cancer is the brave, cheerful “warrior” who isn’t held back by their new-found limitations. It’s rarer to show the oncologists quietly lecturing the patient to stop running around like a lunatic after he blows out a knee on the treadmill, which also happened to me (my doctors all have a level of patience associated with traditional saints). You get the horrific shower scene every cancer survivor encounters, when their hair suddenly comes out and they look just like Britney Spears, circa 2007; you rarely see five months later, when the hair comes back, but in a weird, patchy pattern and the survivor has to shave their hair again because only the President’s hair team is equipped to cover up coin-sized bald patches.

Worst of all is brain cancer. We all know that one plays out like a “Greatest Hits” version of cancer AND dementia. You can imagine how the words, “You have a brain tumor” would hit a 17-year-old, especially one who had been brought in for rolling their car and the disease was caught on an incidental scan. Worse still is the phrase, “You have astrocytoma,” which I heard again at age 28 (“astrocytoma” is really bad news, because it tends to come back frequently and angry, just like that shark in “Jaws”). Then, at 32, I heard those six words every man dreams of from their oncologist, “I’m so sorry, it’s grade four.” Glioblastoma. The deadliest (and most common) of brain cancers; a disease that some surgeons still refuse to operate on. The median life expectancy, depending on anatomical location, type of GBM (no, they’re not all created equal), and course of treatment, is 14–24 months. The overwhelming sensation — and one that many oncologists (unfortunately) still push — is, “Why bother?” 95-year-olds don’t have to put up with this, even though their end is also, presumably, nigh. I literally spent one night in an online support group convincing a woman to go against her insurance company’s policy (and doctor’s suggestion) and get a second opinion. Last I checked, she was still alive, and her inoperable tumor was surprisingly operable.

There are over 150 forms of brain tumor/cancer, ranging from the “not too dangerous” (my first tumor, neurocytoma) to “terminal diagnosis” (glioblastoma, my most recent one, a disease so deadly it’s on the list of “compassionate allowances” — the list of disease that are given automatic social security/disability status with a doctor’s note). There are so hilariously few of us that in my county in southern California, based on the CDC’s estimate, there would only be about 20 of us diagnosed a year, and that’s before we start sub-dividing into meningiomas or glioblastomas that have metastasized from other cancers. And, despite the best attempts of the Stupid Cancer movement, under-40 brain cancer patients are still a rarity and are heavily-stigmatized.

There’s a quilt that I’ve seen in several oncology offices/wards that lists how cancer can’t kill friendship or courage. That clashes rather unfortunately with complaints I’ve heard, online, from spouses or caretakers who want to know if they’re being selfish for wanting a divorce after witnessing dramatic personality changes in their loved ones, post-treatment. One support group I’m in bans caretakers or family members because of clashes with them and brain tumor survivors.

Best of all are the numbers. A WHO report from the mid-2000s used words like “dismal” and “inevitable,” which, I believe, are not statistics terms; or that we’ve only been able to develop two new forms of treatment (Optune and temodar) in the last 20 years. Or that we’ve only been able to prolongue the life expectancy by a few months. A few months. In a few months, you could learn a new language. Or become a decent photographer. Or catch up on literary classics. I did.

Here’s what the stats don’t tell you: This was, until John McCain’s death, an almost-completely abandoned disease. It wasn’t widely-treated prior to the mid-90s. And in the past year, as I hit the “refresh” button on the FDA’s website, two new treatments have gone into Phase III testing, including the trial I was in for first-time-diagnosed glioblastoma. Imagine the statistics on smallpox survival in 1800 (four years after Edward Jenner developed the smallpox vaccine), or HIV survival rates in 1997, and you’ll get an idea of the statistical sway generations of neglect can have.

And, oh, how that hurts all the rest of us in the brain cancer community. The woman I talked to wondered if it was worth it for “only a few more years.” Able-bodied people don’t feel obligated to talk another able-bodied person into completing a course of antibiotics because the side-effects are unpleasant, and, hey, you’re only going to last for a few more decades (which won’t be enough time). I read stories of people who skip chemo rounds or won’t get a second opinion (or third, sometimes) because they’re afraid of what the treatment will do to them — I get it, my first surgery left me with severe, detectable brain damage for over a decade. I also got another decade. Again, not much time, but, to a 17-year-old boy, it was a lot.

You don’t see that in leukemia or lymphoma patients, even though they’re only getting another decade or two. The Guardian once pointed out — with the usual accuracy we expect from tabloids — that cancer survivors see a life expectancy reduction of 30%. Which, for a three-time brain tumor survivor like me, means I should’ve died in childhood. Maybe I did. I’ve also watched my father over the past year, get diagnosed with a few diseases that most people tend to be diagnosed with as they age, and I suffered a TIA (a “ministroke,” to quote one of my oncologists) before age 35 (apparently, having your head microwaved for six weeks — even if it’s done by the very best medical professionals — isn’t healthy). I’ve come to the conclusion that anti-cancer treatments are harsh on the body, and, when paired with the usual maladies of aging, become lethal (this hypothesis was confirmed by a neuropsychologist, but it’s still in the testing phase).

That’s not the narrative most survivors hear, though; that this is going to be horrible, but doable, if you devote yourself to it. I got lucky in that most of my day-to-day consults were done by researchers, who, while not exactly the warmest and fuzziest group, were heavily invested in my survival (as it turns out, it looks suspicious if you drop dead at 34, even if you have a terminal disease), and pointed out that there’s a direct correlation between how well a patient tolerates treatment, and long-term outcomes. I correctly interpreted that as, “You have a disease that is remarkably curable, but the treatment is dangerous, and your only hope to survive it is to stay as healthy as you can for repeated napalm baths.” The cancer community — especially the brain cancer community — needs to hear this from Day 1. Instead, we get told it’s okay if we want to discontinue treatment, because it’s only time.

Here I am, just a few days ago, about 15 months post-diagnosis, two weeks after finishing a full year of chemo (yes, I was getting infused with poisons three times a month):

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You’d be amazed at how good you look, even if you’re bald on one side of your head

AUTHOR’S NOTE: I’m not saying that cancer patients shouldn’t be treated gently and kindly, I’m saying that every doctor needs to start their discussion with words like, “skewed statistics,” and “inconclusive data.” And everyone needs to know, chemo and radiation are absolutely hellish, and it will get worse before it gets better. But you do need to complete the course before things get better.

I also found out that I have a genetic predisposition to colon and stomach cancer, I have no idea how that became “chronic brain cancer,” but I’m sure there’s a tasteless joke about me being a butthead (some of my former roommates will probably collaborate that). I fully intend to get tested for that ASAP, and, if it turns out I need more chemo, surgery, or radiation, you’d best believe I will request Agent Orange flavoring. Because I am in this thing to win it.

Happy World Cancer Day.

Oh, and here’s what chemo actually looks like:

Thanks to a combination of zofran and CBD, i still haven’t thrown up since I got the diagnosis. We can all do it.

Written by

Science journalist, cancer survivor, biomedical consultant, the “Wednesday Addams of travel writers.”

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