2018 Young-Onset Colorectal Cancer Survey Report
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.
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.
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.
Most common symptoms
The most common symptoms of young-onset colorectal cancer were constipation, blood in stool, bloating, rectal bleeding, and diarrhea, according to 2018 survey data. Twenty-six percent of patients reported one symptom, while 56 percent reported having at least three symptoms. Other symptoms shared by survey participants: anemia, back pain, Crohn's disease, blockage, fever and/or chills, and shortness of breath.
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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