The Messed Up Guide to Survivor Stats: Part One
"Childhood Cancer"
My neighbor looked down at her shoes as we walked, suddenly bashful as she fumbled for the words “I guess I always thought that kids’ cancer was a tough initial blow and a long hard battle, but in the end, they almost always pull through…right?”
I know what she’s trying to say. Google “childhood cancer” and you’ll likely stumble upon a relatively encouraging statistic. The National Institute of Health touts that childhood cancer has an overall survival rate of 85%.
And that’s not incorrect. My neighbor isn’t wrong. But upon closer inspection, that stat is like smoke and mirrors. And when you dig into it, it’ll make you want to smash mirrors. So let me clear the air.
The real substance of that 85% statistic is tethered to one subtype of kids cancer: Acute Lymphocytic Leukemia (ALL), the most common childhood cancer. Fortunately, the prognosis for ALL has improved from an abysmal 10% survival rate in the 1960s to a nearly 90% survival today.
Because ALL is the most common type of childhood cancer, the data on Survivorship for kids overall skews toward that top-heavy 90% number, and thus all childhood cancer tends to be glossed over as a relative success from a distance.
You can hide the reality of a nearly 0% survival rate for kids with Diffuse Intrinsic Pontine Glioma (DIPG) or the 30% survival rate for metastatic Ewing Sarcoma when you mix them in with the 90% survival for ALL, 99% survival for Thyroid cancer, the 97% survival for Hodgkin's Lymphoma. Bluntly, the overall Childhood Cancer Survival rate of 85% is worthless, a soothing marketing stat at best: “Kid’s Cancer is no biggie. The cute bald kids are (probably) going to get better. Carry on with your day!” When it comes to our kids, it feels like we’re painting success with a very weird, very broad brush that just doesn’t exist in discussions around adult cancers.
When you google “adult cancer survival rates” the same organization that spit out the 85% stat for kids doesn’t kick back a number. The NIH says “it varies.” Because of course you can’t put prostate cancer (97% survival) and pancreatic cancer (10% survival) in the same stat. If you calculated the blended survival rate for those two types of cancers it would be 94.4%.
BREAKING NEWS: ADULT CANCER NOT THAT BAD! 94% SURVIVAL RATE: SCIENCE IS AMAZING!
It would be the ultimate #FakeNews. It would discount and silence entire patient cohorts with different cancer subtypes. Instead we talk about adults’ survivorship as it relates to defined stages of specific types of breast cancer -- so unique to a patient that it reads like alphabet soup to a layman. We talk about subtypes of colorectal cancer, the 11+ different subtypes of oral cancer, or advances made for patients with Lentigo Maligna Melanoma.
This disparity in basic statistics is unfair and it runs deeper than just the false hope and false comfort of an inflated survival statistics. Financially our kids are glossed over too. The National Institute of Health lumps “all childhood cancer” together when distributing funding. The kids -- all of them combined -- get a mere 4% of the budget - less than many individual forms of adult cancer.
Childhood Cancer -- again, all subtypes combined - was allocated $220 million dollars in 2017 from NCI. The average age of diagnosis is 8. And the convoluted blended survival rate is 85%.
Prostate Cancer - one slice of the big pie of adult cancers - got $230 million in 2017 from NCI. It has a 97% survival rate, and the average age of diagnosis is 66. [Authors Note: I’m willing to guess that the folks allocating the NCI funds for cancer research are predominantly men approaching 66 years old. Whose children never had cancer]
As a nation, we are failing these kids so hard. And the public is being duped into thinking that the situation is not dire when it is in fact urgent. The big powers in the cancer community proudly boasts that major strides have been made since the 70s. That's true for leukemia, but for "rare" cancers like Ewings, there's been virtually no advancements in 40 years. It’s incredibly frustrating to the families and tiny voices of childhood cancer screaming out for help, for a cure, for an innovative drug, or even just a single clinical trial to be available at initial diagnosis. For many, including my daughter, there were none.
And then, devastatingly, there’s the measuring stick of success itself. In my life before cancer, I always heard the word “survivor” or “cured” and just sort of figured it meant that cancer was . . . over. The child had beat cancer, and now could go back to normal life.
I wish I had been right. In Part II of this "Messed Up" series, I'll tackle what it means to be a Survivor of childhood cancer.
Maggie Spada is Co-Founder of the Little Warrior Foundation, mom to an Ewings sarcoma warrior, and is pissed off.