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Never too young

In June 2018, the Colorectal Cancer Alliance launched its third annual survey of young-onset colorectal cancer patients, survivors, and, for the first time, caregivers. The Alliance uses the survey to learn about and track the self-reported medical, psychosocial, and quality of life experiences of these often overlooked groups. The Alliance solicited participation over social media, email, and web-based communities. Over a 30-day period, the Alliance received 1,622 responses (1195 patients/survivors and 427 caregivers) from 38 countries.

71% were diagnosed at a later stage (III or IV)

67% saw at least two physicians prior to a correct diagnosis

41% waited at least six months after experiencing symptoms before talking to a doctor

Age at diagnosis

The majority of survey participants (57 percent) said they were diagnosed between the ages of 40 and 50.

85% experienced anxiety or depression during or after treatment

64% said a medical professional did not talk to them about fertility preservation during diagnosis or treatment

62% experienced financial difficulties

Stage at diagnosis

Most survey participants (71 percent) were diagnosed at stage III or stage IV (metastatic). About 46 percent said they were diagnosed with stage III colorectal cancer. A quarter were diagnosed at stage IV.

My doctors weren't looking for colon cancer. My symptoms were pretty obvious in hindsight, but I don't think they are used to seeing this diagnosis in young people.

Immediately, he had a lot of support from friends and family. Later, as he got sicker, his friends pulled away ... maybe not knowing what to say or do, maybe because of his physical changes.

As the nation’s largest colorectal cancer advocacy organization, the Colorectal Cancer Alliance aims to address these needs, providing a voice to all those who were told they were “too young” to have colorectal cancer. Armed with the data from this survey, the Colorectal Cancer Alliance’s Never Too Young Advisory Board and program is committed to raising awareness about young-onset colorectal cancer and offering innovative ways for survivors, caregivers, and the medical community to become involved.

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