Sarah DeBord was diagnosed with metastatic colon cancer at age 34. In the years since, she has turned her diagnosis into a calling, and become an advocate for other young adults diagnosed with colorectal cancer and parents with young families facing cancer. She works as a communications and program manager for the Minneapolis-based Colon Cancer Coalition , volunteers her time with the online patient-led support community COLONTOWN , and blogs about her often adventurous experiences of living with chronic cancer at ColonCancerChick.com.
Why use one term over the other? It's not about exclusion, but rather inclusion and reaching all at risk for this disease-- which happens to be everyone.
March is Colorectal Cancer Awareness Month, and this is the time when I hear the most feedback and conversation around the use of the word "colon" versus "colorectal" when describing the type of cancer I have. It's also the type of cancer the organization I work for strives to prevent through screening and education. At times those conversations surround the work being done to promote awareness and the confusion and exclusion felt because many use the word "colon" and not "colorectal" to educate about this disease.
From within the colorectal cancer world, there can be a feeling of isolation and separation when rectal cancer patients see their disease generalized under the term "colon cancer." We are already up against the stigma of a cancer that is uncomfortable for many to talk about, so leaving out a part of our digestive tract where this cancer does grow can feel like we are further contributing to that shame.
As a patient with colon cancer, I want to be inclusive of friends and peers diagnosed with rectal cancer. I am fortunate in that the surgery to remove my primary tumor was simple and straightforward, but I know rectal cancer is a very different beast. The process by which a rectal cancer patient works to rid themselves of their cancer can be far more invasive and involved, often resulting in greater long-term or permanent effects and repercussions to their bodies.
So why leave "rectal" out of "colorectal cancer" awareness? Those of us working to educate and encourage people to get screened for a largely preventable cancer know it is an uphill battle that faces many disparities. As patients and survivors affected by colon or rectal cancer, we need to take ourselves out of the bubble we live in and consider that most do not have the health literacy that we now have as members of this community. I speak from personal experience in the work we've done:
When we are trying to reach and educate people that might not know they can prevent colorectal cancer through screening, we strive to keep it simple. We factor in things like health literacy, knowledge of anatomy and remember that a basic lifesaving message isn't about exclusion, but education.
Within the colorectal cancer world, we want to recognize and include rectal cancer patients as we are talking to an engaged and educated community. But when trying to "engage the unengaged" about preventative cancer screening, using the word “colon” is short and easy to read. I know “colorectal" is not a word we should shy away from, especially as rectal cancer rates in young adults are rising at twice the rate of colon cancer. But we should consider that when trying to "reach the unreached," the simpler the message the more likely someone is to understand it, get the screening they need to prevent this cancer and save their life.