Survey Identifies Trends and Unmet Needs for Young-Onset Colorectal Cancer

In an attempt to better understand the critical unmet needs of young survivors of and patients with colorectal cancer, the Colorectal Cancer Alliance launched an annual survey. These latest findings indicate the unique challenges of young-onset CRC and the need to continue improving this treatment landscape.

In an attempt to better understand the critical unmet needs of young survivors of and patients with colorectal cancer (CRC), the Colorectal Cancer Alliance launched an annual survey. These latest findings indicate the unique challenges of young-onset CRC and the need to continue improving this treatment landscape.

Young-onset CRC is defined as those diagnosed under the age of 50. Research has shown that young-onset CRC is more frequently diagnosed in advanced settings that require more aggressive treatment than patients who are over 50 years old, which is the recommended age to begin screening for CRC. The incidence of diagnoses of CRC is increasing more rapidly in the young-onset population compared with older groups of patients.

A total of 885 patients and survivors completed the online survey in 2019, which addressed topics including demographics, community, lifestyle prior to diagnosis, symptoms and diagnosis, genetic testing, knowledge of clinical trials, and quality of life. Up to 140 questions were included in the survey. The goal of this survey was to determine the unmet needs of this community in order to improve their outcomes.

The median age of the respondents was 42 years and 79% were female. The majority of responders were Caucasian (90%), from the United States (87%), had a college degree (75%), and lived in a suburban area (60%).

Lifestyle and Habits

Most respondents (42%) reported they were in good health, and 35% had excellent health. Only 21% reported average health, and 3% of respondents said they had poor health. Reports on overall health were different among ethnic groups, where African Americans were 4 times more likely to report poor health compared with Caucasians. Asian/Pacific Islander, Hispanic/Latino, Native American, and others did not report poor health, and Asian/Pacific Islanders and Hispanic/Latinos reported excellent health in higher proportions.

In terms of physical activity prior to diagnosis, 85% said they led an active or very active lifestyle, and 15% said they lived a more sedentary lifestyle. Among those reporting a healthier lifestyle, 23% of women versus 34% of men were highly active and 62% versus 52% were moderately active, respectively. More women said they were active 2 to 4 days a week while men were more active 2 to 3 days a week.

According to the authors, a diet that is high in fruits, vegetables, and fiber may lower the risk of CRC, while a diet high in red meat or processed foods may increase the risk of CRC. On a daily basis, 3.1% admitted they do not eat vegetables and 7.0% said they do not eat fruits. The majority of respondents said they ate at least 1 serving of vegetables (39.3%) and fruits (47.5%), while 24.1% and 24.6% ate 2 servings of vegetables and fruits daily. Three servings of vegetables and fruits were reported in 18.4% and 14.0%, and a small proportion of patients said they eat 4 or more servings on a daily basis.

While recommendations for daily water consumption is higher in men and women, 8 glasses of water per day is a more attainable goal, but only 23% of respondents met or exceeded this per day. Soda, including sugar-free beverages, should be limited due to the potential link to weight gain, but 70.6% of respondents said they drink regular or diet soda at least once a week. Overall, 12.4% of respondents consumed diet soda at least once per day and 14.7% said they drink regular soda at least once per day. Twelve percent of patients consumed 10 or more sodas per week.

Prior to diagnosis, 30% of respondents were overweight and 30% were obese, according to Body Mass Index (BMI) calculations. Only 33% of respondents had a BMI within normal range, and 7% were underweight. A higher proportion of men were considered overweight or obese compared with women, and more respondents in rural areas were clinically obese compared with those in suburban and urban areas.

Smoking has been known to increase the risk of developing CRC among patients of all ages. A previous study from 2010 also indicated that smoking in the past was associated with a higher risk of developing CRC compared with never-smokers. However, little is known about the relationship between smoking and young onset of CRC.

Seventy percent of respondents said they had never smoked prior to their diagnosis, but 9% indicated exposure to second-hand smoke. A smaller proportion of respondents said they were smokers at the time of diagnosis (10%), and 18% said they used to smoke. Of those who identified as smokers, more than half said they smoked at least 2 packs per week.

Men reported drinking more often than women in the survey, in which 23% of women said they did not consume alcohol compared with 14% of men. Eight percent of women and 15% of men said they consumed alcohol on a daily basis, but those who lived in rural areas were more likely to not drink than those in suburban or urban areas.

Overall in this survey, 9.49% of respondents said they drank every day, 23.5% said they drank once a week, 40.23% said they drank occasionally, and 5.54% said they drank once a month.

Family History and Genetic Testing

The risk of developing CRC is increased by having a family history of CRC. About 28% of respondents indicated a prior history of CRC in their family, which is a consistent finding with prior research and literature, and 52% of respondents were aware that family history increased their risk for CRC, as well as other cancer types like gastric, endometrial, and ovarian cancers. Twenty percent of patients without a family history were less aware of the increased risk for their family members. More respondents with a known family history of CRC were diagnosed at earlier stages than those who did not know or did not have a family history.

Nine percent of the respondents said they had a first-degree relative with a history of Crohn’s disease, inflammatory bowel disease, ovarian, and/or gastrointestinal cancer, and many patients reported a second-degree relative with CRC, which was most often a grandparent.

Genetic testing was not considered necessary until around 2010, which is why the authors believe 21% of respondents were not offered genetic testing. Thirty-five percent were offered testing at the time of their diagnosis, 2% had testing done prior to diagnosis, and 38% had testing done during treatment. Seven percent of the respondents did not remember whether they had genetic testing done or preferred not to answer.

Open dialogue between family members is important and helps to increase awareness and prevention of CRC, as well as early detection of the disease. Of note, respondents with a graduate or professional degree were slightly more aware of their family history (28%) than college graduates or high-school graduates (24%).

Out of 660 respondents who had children, 83% said they were informed that their children should be screened for CRC 10 years prior to the age of the parent at diagnosis, but 12% said they were not informed of this. Respondents with children were 1.5 times more likely to say they would have their family members undergo genetic testing while respondents without children were 1.6 times more likely to leave this decision to their family members. Those with children were also 1.5 times more likely to have their family members tested for genetic mutations compared to those without children. Overall, 76% of respondents were fearful that their mutation would be passed down to their children.

Leading up to Diagnosis

The majority of respondents had no knowledge of the signs and symptoms of CRC prior to their diagnosis (49%), and 37% said they were somewhat familiar with the signs and symptoms. It is common that young-onset patients with CRC have symptoms for months or years prior to seeking medical help, which was observed in this survey as well, where 62% of respondents said they waited 3 or more months before visiting a medical provider after noticing symptoms.

Many patients reported seeing multiple doctors before being diagnosed correctly with CRC; 39% saw 2 doctors, 19% saw 3 doctors, and 17% saw 4 or more doctors. Of those who saw only 1 doctor, 44% said they saw the same doctor multiple times prior to diagnosis, and 50% were ultimately diagnosed in the emergency department.

Forty-five percent were diagnosed within 1 month of seeking medical attention, 10% within 2 months, 18% within 3 to 6 months, 6.5% within 6 to 12 months, and 19% said they obtained their diagnosis after more than 12 months.

More than half the respondents (54%) were misdiagnosed, which included 43% diagnosed with hemorrhoids alone or in combination with other conditions, 17% with anemia alone or with other conditions, 12% with irritable bowel syndrome alone or with other conditions, and 11% with mental health issues alone or with other conditions.

Disease at Baseline

More than half of the patients with CRC (59%) had left-sided tumors. Thirty-nine percent had rectal cancer and 2% had both colon and rectal cancers. Over 77% of respondents had been diagnosed with stage III or IV disease, and only 39% of patients went on to receive a second opinion prior to receiving treatment. Only 7.2% of patients were diagnosed in stage I and 15.1% in stage II.

At the time the survey was conducted, 57% said they had no evidence of disease, and the majority of these patients (32%) said they had no evidence of disease for less than 1 year. At least 1 recurrence was observed in 23.5% of patients, of which 60% had 1 recurrence, 23% had 2 recurrences, and 10% has 3 recurrences, while the remainder had 4 or more recurrences. One patient had at least 10 recurrences.

Biomarker Testing and Treatment

Customized treatment plans begin with genetic testing, as the results can predict how a tumor will respond to various treatments. However, only 38.2% of respondents had received testing concurrently with treatment, and a smaller number of patients (35%) were tested at diagnosis. Fifty-four percent said they were aware of the importance of biomarker testing, and 46% were unsure or thought it was not important.

The majority of respondents said learning about clinical trials was important (87%), but only 27% said their oncologists mentioned trials at diagnosis. Trials were spoken about more often among those with stage IV (36%) and stage III disease (28%) compared with stage I (13%) and stage II (16%). Most patients in the survey said the process of looking for clinical trials was overwhelming regardless of their stage of disease at diagnosis.

Nearly half (46%) said they would consider a clinical trial, but 22% said they would only participate in a trial if they had exhausted all other options, indicating a need for education on clinical trials. Approximately 70% of oncologists did not discuss trials with their patient or discouraged participation in a trial. Overall, there appears to be a lack of knowledge on clinical trials and an unmet need for education on this topic for both patients and their providers.


Concerns for personal mental health was noted in 75% of the respondents, and 64% said they needed help for depression. Twenty-five percent said their mental health concerns significantly impacted their lives, and 95% said emotional exhaustion impacted their lives at least some of the time. More than half the patients said their lives were impacted always or often by their mental health. Most significantly, 19.6% felt emotionally exhausted all of the time and 31.9% often felt emotionally exhausted, demonstrating a need for emotional support in the young-onset community.

Ninety-seven percent of patients were afraid their cancer would return, and more than 50% were always afraid their cancer would recur. Thoughts of recurrence interfered with daily activities in 66% of respondents.

Fatigue also impacted daily activities in 90% of the responders and exhaustion limited social activities for 88% and the ability to make decisions for 80%. Pain also interfered with day-to-day life for 71% of the responders.

Overall, several gaps were identified with this survey, eluding to the need to change the culture around biomarker testing and clinical trial education in particular. These findings also indicated that younger patients with CRC and survivors have unique challenges around fertility, sexual dysfunction, pain, and wellness. Most patients felt they were not informed well about ongoing pain and adverse effects of treatment, as well as its overall impact on their daily life.

Limitations in this survey included the sample size, selection bias, and homogeneity, but authors noted that the information captured has significant value in identifying the areas for improvement in both the diagnosis and treatment of these younger patients with CRC, as well as survivorship. The survey also included questions for caregivers, and the findings from this section will be presented later in 2020.


Never Too Young Survey Report 2020. Colorectal Cancer Alliance. June 4, 2020. Accessed June 9, 2020.