I’ll never forget the moment I walked into the dark ballroom and experienced a sigh of normalcy. With music pouring out from loud speakers, sparkling lights adorning the dance floor and girls strutting by in flowing prom dresses, I had rejoined my teenage life — even if it was Cinderella style.
Just a few days later I landed myself back in the chemo chair.
As a large bag of chemicals pumped a monstrous liquid into my port, I sat and retold my prom tales to a group of doting nurses who’d tracked my plans leading up to the big event. They wanted every detail – my dress, my date and our dinner plans. The gray-haired patients sitting next to me eavesdropped.
A teenager’s prom night was hot news for the oncology department.
Although my age and energy brought a new (and welcomed) dynamic to the infusion suite, it also brought a unique and rare story.
In 2001, early-onset colorectal cancer was a novelty. Few had heard of anyone diagnosed with the disease under age 50, much less in their teens. Just about every doctor, nurse and lab tech who read my chart commented on the rarity of my case.
And they were right. Colorectal cancer under age 50 was practically unheard of; and most assumed it couldn’t happen.
Few websites indicated the possibility that it could occur. Brochures failed to mention the slowly growing incidence rates among the young population. Adorable grandparents graced the cover of every brochure I could find about the disease.
I assumed I was one of the only patients facing the disease under age 50. After all, my doctors had never seen another patient like me.
Like a unicorn in the oncology ward, my story was practically unbelievable.
That was 14 years ago.
Along with the introduction of Gmail, Facebook, smart phones and mainstream kale salads, a surge of young patient stories like mine has also shown up over the past decade.
What was once a rare story in oncology has now become quite the norm for many clinics. Or, so it seems. Although we’re still the 10% of CRC cases, we’re a growing population of patients.
The “under 50” issue in colorectal cancer is now a hot topic in the community.
The Colon Club got awareness going among the young adults through the annual Colondars in 2005. The explosion of social media sites and private online communities in the late-2000s started to connect young survivors more and more. As the cases continued to rise, more and more nonprofits formed. And the races and events across the country brought people together in unprecedented ways.
Now, there are dozens of organizations and coalitions committed to raising awareness, providing financial and psychosocial support and funding research for those impacted by under 50.
The growing incidence rates have also gotten the attention of the medical community. We’re working to ensure signs and symptoms are on the radars of primary care doctors. More gastroenterologists are willing to scope their young adult patients. Colorectal cancer surgeons are stating they’ve seen CRC in patients under age 50. Researchers are now dedicating their careers to specifically “under 50” CRC patients.
While our stories are still unique, we’re not quite the unicorns we once were.
For the first seven years of my life as a cancer patient, I didn’t think there were others out there like me. When I found The Colon Club, I realized I wasn’t alone.
Getting involved in other organizations and coalitions has just furthered that realization. There are a lot of others out there like me, diagnosed at a young age, and ready to do something about it.
We’ve seen many changes over the past decade thanks to survivors speaking out and getting involved in advocacy, we need to keep going.
Some great resources are now available for “under 50” patients. We need more.
And probably most significant of all – more and more research projects examining this “unicorn” problem of young-onset colorectal cancer are underway.
We need all of the support we can get if we’re going to keep moving forward and see progress continue.
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If you’ve been impacted by colorectal cancer, we need you! Join us and use your experience, your story and your voice to create real change. Get started by signing up. Next, see all the ways you can do something about this disease and take steps to get connected with our community. Come fight with us.