More people get cancer but fewer people die these days. That's a simple truth that has not quite seeped into the cognitive process for most Americans. Rarer cancers notwithstanding (there will always be edges to bell curves), there has been considerable progress -- primarily for boomer and senior populations -- in detecting cancer earlier and even reducing the risk of developing it in the first place. But people are still getting it. Cancer incidence appears to be increasing, yet is that due to better screenings or actual biological incidence?
Unlike other conditions, cancer is biologically hundreds of different diseases, each manifesting uniquely in a host. This means that no two cancers are identical. This also means that no two cancers should be treated identically, and we've been looking for hundreds of cures for more than 60 years now.
But what does "cure" mean? If we're chasing blue sky, shouldn't there be one standard definition and understanding? Does cure mean (a) you get cancer but don't die from it or (b) you never get cancer in the first place? The greater scientific community would agree that the latter is impossible, given that cancer itself is a naturally occurring biological condition that's as old as evolution itself.
So that leaves "get cancer but don't die." Is it possible to lump 200-plus individual diseases all under the cancer umbrella? Is it feasible to think we can control the spread of cancer inside the human body?
I recently made a public statement on Facebook about the state of oncology, attempting to detoxify the notion that "someone is hiding a pill in a safe somewhere that cures all cancers" and comments like "can't we just cure cancer?" I wrote:
"Cancer is the single most complex disease ever researched. There are over 200 kinds and every single diagnosis manifests differently in each individual. There is no one single cure and even the word 'cure' itself is now both controversial and highly subjective. Prevention is equally unrelatable to many, e.g., I was born with my cancer. Reducing your risk is possible, but the healthiest still get sick. For me, our goal is to eliminate the death and suffering due to cancer as much as possible, marginalizing the disease to the point of a managed chronic condition like HIV and diabetes. Survivorship matters. That, to me, is the cure."
Even President Obama's recently announced cancer Moonshot initiative, as ambitious and amazing as it sounds on paper, immediately gives off the false promise that there is a single cure for all cancer in the land -- and this is fundamentally misleading and damaging to public perception and trust.
We're all sold on "cancer research" every day. Help cure cancer. Support XXX because we're going to find a cure. Again, as if there's one magic bean somewhere that, like a miracle panacea, fixes everything at once. As a 20-year cancer survivor, this really bothers me.
But cancer research is now -- finally and justifiably -- splitting into two scientific specialties. Since quality of life is now considered tantamount to quality of care, the medical part (surgery, radiation, chemo, transplants, etc.,) needs to be complemented and augmented.
Enter cancer survivorship research. Survivorship addresses physical, social and psychological issues that have resulted from a cancer diagnosis and provides individuals with appropriate education and resources to meet their needs, all in an effort to optimize their quality of life and health outcomes.
This is the grossly underfunded study of how to actually live well with -- through and ideally beyond -- cancer. Entering remission and being declared disease-free is great, but what kind of life can and will you have going forward?
It is my hope that, over time, the understanding of cancer research means more than just remission, more than just NED (no evidence of disease); that the millions of people who hear the words "you have cancer" will be able to get busy living with dignity and have increased quality of life with more navigation and support.
Survivorship is the new BFF of cancer research.
Matthew Zachary is founder of Stupid Cancer, the nation's dominant youth and young adult cancer advocacy nonprofit. As CEO, he built the team that launched a social movement by disrupting and innovating the nonprofit model and uniting several industries to embrace the cause of young adult cancer survivorship. Diagnosed with brain cancer at 21, Matthew is a concert pianist and ad-agency veteran who holds a Bachelor of Arts in music, computer science and sociology from Binghamton University -- SUNY and lives in Brooklyn with his wife and twins.