2017 Young Onset Colorectal Cancer Survey Report
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Colorectal cancer is the third most common cancer in the United States and the second leading cause of cancer death, claiming the lives of more than 50,000 people every year. This disease affects men and women of all racial and ethnic groups, and while the average age of diagnosis is 68-72 years old, incidence in those younger than 50 is on the rise.
According to data from the National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER) Program, there has been a 51% increase in young onset colorectal cancer incidence within the 20-49 age group since 1994 , and without taking action, researchers predict that by 2030, “more than 1 in 10 colon cancers and nearly 1 in 4 rectal cancers will be diagnosed in people younger than the traditional screening age.”
Since 2012, the Colorectal Cancer Alliance has been advocating for research and educational advances related to young onset colorectal cancer. At our 2012 National Conference, we held a symposium dedicated to young onset colorectal cancer, and based on the response from our constituents, it became abundantly clear that young onset colorectal cancer is on the rise at an alarming rate. Since then, we have continued to lead the charge for young onset colorectal cancer within the community . In February 2014 we coauthored a whitepaper, “The Increasing Incidence of Young-Onset Colorectal Cancer: A Call to Action”  and since 2014 we have committed more than $400,000 to support young onset colorectal cancer research.
There are unique challenges that young survivors face, and in an effort to better understand and support this unique population, the Colorectal Cancer Alliance launched a groundbreaking pilot survey in June 2016 that garnered 992 responses from young onset colorectal cancer survivors. The results found that 82% were initially misdiagnosed before ultimately being diagnosed colorectal cancer, with 39% being misdiagnosed with hemorrhoids. In addition, 20% waited more than 12 months from initial presentation of symptoms to talk to a physician and 44% felt that their diagnosis was delayed because of their age. Due to various factors, 57% of respondents were diagnosed at an advanced stage of colorectal cancer (stage III or IV). Based on our results from the previous year, we updated our initial survey and this year disseminated it through social media platforms for a period of one month. Our 2017 survey resulted in 1,535 responses from young onset colorectal cancer survivors from 28 countries around the world.
said they were diagnosed with colon cancer, while 28% were diagnosed with rectal cancer
of respondents were diagnosed between the ages of 40-49
were diagnosed at an advanced stage of colorectal cancer (stage III or IV)
did not have a family history of colorectal cancer, and 10% had a family history but were unaware of it before their diagnosis
stated they did not have Lynch Syndrome, while 16% were unaware of what Lynch Syndrome is
had a child under the age of 10 at the time of their diagnosis
currently have no evidence of disease
“I was completely ignored for years by multiple doctors. It was only when I nearly died that someone even listened to me.”
“Telling my children that I have an incurable disease. The treatments have been very hard but to be honest nothing has been harder than seeing the look in my husband & children’s eyes everyday as they watch me die a little at a time each day.”
“There’s not a huge supportive presence for young adults with this diagnosis…I greatly appreciate the effort of the CC Alliance on this front…Thank you!”
The data collected through this survey is significant in that it confirms data collected from researchers and clinicians working in this field, while also providing the survivor’s perspective. Based on the quantitative and qualitative findings, there is still much to be done to educate the medical community and the public at large about the increasing incidence rates of young onset colorectal cancer.
As the nation’s largest colorectal cancer advocacy organization, the Colorectal Cancer Alliance aims to provide a voice and a call to action for those who were told they were “too young” to have colorectal cancer. We will continue to address the unique issues facing this population, as well as to better educate the medical community that colorectal cancer effects all genders, all ethnicities, all ages.
Download the full report for all figures and facts from our 2017 Young Onset Survey.