Colon cancer survivor and scientist: You’re so much more than a statistic

As a disaster researcher, I’ve always valued the role of science in helping others live more resiliently. I’ve used statistics to help communities make evidence-informed decisions for how to prepare, respond and recover from disasters.

Then in my mid-30s, I encountered my own personal disaster: I was diagnosed with late-stage cancer. And, statistics almost cost me my life.

At the age of 34, I started having stomach and bowel problems. The specialist I saw misdiagnosed me and chalked up my symptoms to needing more fiber.

"For someone your age, I don't think there's anything to worry about," the doctor told me.

This was before the 2017 study showing an increase in colon cancer among people in their 30s. Though this study is the one that made a splash in the news, several other preceding studies had been pointing toward this trend. Unfortunately, my provider made his recommendations based on outdated statistics. A year later, the symptoms came back worse and I was diagnosed with Stage IV colon cancer.

At 34, I accepted the advice I received without investigating the statistics for myself, because I didn't want to believe that it might be something worse.

When I was finally diagnosed with Stage IV colon cancer I asked my family and friends not to say “Stage IV” around me because it made it hard for me to keep fighting knowing the statistics said the odds weren’t in my favor.

Eventually, statistics and I got back on good terms.

Statistics helped me make informed treatment decisions. When my oncologist told me I needed another round of drip chemotherapy that would last six months, I didn't know if I could withstand it. Before agreeing, I asked my oncologist for outcome data about this course of treatment. His assistant sent me a link to a generic cancer patient treatment site that outlined some common forms of treatment.

But I needed randomized clinical trial treatment studies, longitudinal studies or, better yet, a meta-analysis. My oncologist shared several articles that had guided his treatment recommendation. Seeing the best data available at the time helped me realize more treatment – however tough -- was worthwhile.

Research has shown that holding onto hope is important for cancer patients and survivors alike. But I found the challenge is learning to balance optimism with realism. In 2017, I gave the keynote talk at the Fred Hutch Cancer Research Center’s Adult Moving Beyond Cancer to Wellness conference. I met another survivor who shared how some days cancer can feel like we are engulfed by a hoodie and can’t see past it. The key is to do our best to push up the hoodie’s sleeves and pull down the hood as far as we can to get on with the life we still have. After I finished my cancer treatments four years ago and found out there was no evidence of disease, I went back to researching disasters.

I also joined a qualitative research project studying cancer survivors. Qualitative research aims at going beyond the numbers to get real experiences through interviews and real-life stories. Recent qualitative studies my colleagues and I published on cancer survivors’ meaning-making and spiritual experiences reminded me that each of our cancer stories is unique.

Maybe you feel like cancer has reduced you to a statistic. But qualitative research reminds us that not all of life’s variables and experiences can be calculated or captured by numbers.

Use statistics and the best available science to help you in your cancer journey, but don’t let any of it define who you are. You are so much more than a number.

Jamie Aten, PhD, is the founder and executive director of the Humanitarian Disaster Institute and Blanchard Chair of Humanitarian & Disaster Leadership at Wheaton College in Illinois. He is the author of A Walking Disaster: What Katrina and Cancer Taught Me About Faith and Resilience (Templeton Press). In 2016 he received a FEMA award at the White House. Follow on Twitter at @drjamieaten or visit his website jamieaten.com. This guest column appears through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for more than a million patients and caregivers.