The Messed Up Guide to Survivor Stats: Part II
5-Year Survival Stats
In the world of cancer language and statistics, the term “survivor” is merely a label given to a patient is still alive 5 years after they were diagnosed. It doesn't matter if they're still fighting the cancer, or if they're paralyzed and bed ridden - just: are you alive?
So for kids, that means we’re simply measuring:
Did your two-year-old live to see second grade?
Did your 16-year-old reach the age to legally share beer with Dad?
Did your eleven-year-old live long enough to sit for their drivers test?
If the answer to this is yes, then — as far as the statisticians are concerned — your child’s treatment was a success, period.
Our friend’s son was diagnosed with cancer at age three. He spent the next 6.5 years of his life receiving the most aggressive treatment available from hospitals across the country, with brief periods of remission. He died when he was ten. But he did live to be eight years old. Five years past his diagnosis. As such, he is counted in reported childhood cancer statistics as a Survivor.
His mother, and siblings, and a community that loved him beg to differ. We should ALL beg to differ.
Same for the girl who “beat” osteosarcoma at 11 years old, and then relapsed and passed away at 23. The statistics claim her as a survivor.
The boy who successfully battled Ewing Sarcoma only to succumb to leukemia 6 years later (a secondary cancer resulting from his toxic treatment) — that’s a victory as far as survival stats go.
I mean, is that not the most maddening and heartbreaking thing you’ve ever heard?
Let’s apply this logic elsewhere. On average, how many marriages really last in the country? If you were going to guess about half, you’d be wrong. Nearly 90% of marriages survive. Want to know why? Because I’ve arbitrarily decided that we’ll only measure success as the first 5 years of marriage. Statistically, the first few years are when things are most likely to go sideways . . . so let’s stop counting after that. Wow, 90%, what an improvement! I’m calling up the PR department for Marriage & Families now… we just fixed the problem!
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I mean it’s so stupid it makes my head hurt, and so depressing it makes my heart hurt.
I am angry and bewildered that our country has chosen to prioritize cancer research this way. All cancer is truly awful, but unlike adults diagnosed with cancer, children have on average 70 yrs of life ahead of them.
They deserve to have a childhood. To become teenagers. To go to college, or not, to mess up, to laugh with friends, to become parents themselves, to outlive their own parents. They deserve to LIVE, period. So it would seem logical that we would view their survivorship as also being different. And yet we apply the same measurement of success onto kids as we do adults. Why? The 76 yr old who dies at age 81 is not the same as the four year old that dies at age nine. I don’t know any soul on this planet who would accept a narrative where “Survivors” die before middle school.
So let’s extend the measuring stick a bit and see how that changes things. Lumping all childhood cancers together (even the ones with the best prognosis), the 30 yr survivorship number becomes more grim at only 65%. Because cancer can return after the 5 yr mark. Because these kids’ bodies have been beaten up by toxic medications, causing osteoporosis/chronic heart disease/liver and kidney failures that unfortunately take many of them too early. Why isn’t that the number that pops up when I google childhood cancer? Why isn’t that the general public’s impression of childhood cancer success in our country?
I don’t want to sound like I’m whining about about the value of those additional years gained from treatment. I know many bereaved families that would be grateful for one more day with their child, let alone 30 yrs. But I do have a problem living in a world where a nine year old cancer survivor has a merely 65% chance of living to be my age. And that the general public, somehow, isn't aware of this. And in fact, is under the impression things over here on planet Kids with Cancer are not too bad… as far as cancer goes.
Well sixty-five percent is an F. We’re failing these kids, and we have got to do better.
These statistics are hard to read, hard to write, and were like a blow to the gut when my daughter was diagnosed. But I have to write them, have to say them, have to scream them from the rooftops because the implied undercurrent of NOT stating the problem is that there's nothing to fix. And clearly, there's SO much to fix here.
Through it all—I still have hope & I'll talk about why in Part III.
Maggie Spada is Co-Founder of the Little Warrior Foundation, mom to an Ewings sarcoma warrior, and is pissed off.
In our first blog in this series, we dug into the wacky way we calculate and generalize Childhood Cancer as one thing. Our upcoming final post will be more optimistic. We promise. We’ve got our chins up and our fists up — we hope you do, too.