When fear gets in the way of a life-saving test

Surviving colorectal cancer is a major milestone. But for the hundreds of thousands of Americans who complete treatment each year, survival is only the beginning of a long road of medical follow-up. A surveillance colonoscopy about a year after surgery is one of the most important steps on that road, but unfortunately a substantial proportion of patients do not complete recommended surveillance. A new study published in Diseases of the Colon & Rectum is trying to understand why, and the answers point to some uncomfortable truths about fear, fragmented care, and the burden placed on patients to manage their own follow-up.

So why does this colonoscopy matter so much? Colorectal cancer patients treated with surgery face up to a 40% chance of disease recurrence with highest risk for local recurrence, and a surveillance colonoscopy one year after surgery is one of the most effective tools for catching it early. Research has shown the procedure can reduce five-year mortality by around 43%. Yet completion rates remain alarmingly low; one Washington State study found that even when the window was extended to 18 months, only 56% of survivors followed through.

To find out why, researchers at Fred Hutch Cancer Center and the University of Washington enrolled 19 colorectal cancer survivors who had not completed their surveillance colonoscopy within 18 months of surgery. Using a combination of questionnaires and in-depth interviews, the team asked patients directly about what was holding them back and what might help them follow through.

"Patient perspectives on barriers to completing surveillance colonoscopy are sparse in published research," said lead author Dr. Pranusha Atuluru. "In our study, we directly captured patient experiences and found that fear, particularly anxiety related to cancer recurrence, is the most commonly reported barrier."

That finding is striking. Nearly two-thirds of participants reported that fear of what the colonoscopy might reveal was a reason they had delayed the procedure. Patients weren't uninformed– 100% of participants said they believed the follow-up colonoscopy could help protect their health. The problem wasn't knowledge; it was anxiety.

As one patient put it: "I think anyone having a colonoscopy experiences anxiety about what will be found. I mean, people are pretty naive to the workings of the insides of our bodies and so of course it's going to raise concerns."

This is a paradox familiar to cancer psychologists: the very fear of discovering bad news can prevent patients from taking the steps most likely to improve their outcomes. Rather than seeking reassurance, some patients avoid the procedure altogether; even though patients who did complete it described the relief of a clear result as one of the most powerful experiences of their survivorship. The reward for doing the scary thing, it turns out, is freedom from the fear itself.

Fear wasn't the only obstacle. Patients also described a healthcare system that often left them needing to figure things out on their own as a key environmental barrier. Nearly a third reported inadequate communication from their clinics about when and how to schedule the procedure. Others had switched providers, moved, or simply lost track of paperwork.

"I'm usually told when I should get the next one, and then no one ever calls me to help me schedule, so I end up having to reach out... unfortunately, that's meant that I've been a little late on some of them," one participant explained.

Bowel preparation, the intensive cleansing process required before a colonoscopy, emerged as another major practical barrier, reported by 42% of participants. The physical demands of the prep, including nausea, diarrhea, and hours of liquid-only diets, were enough to deter follow-through for many patients.

The flip side of these findings is equally instructive. Patients who did engage with the process pointed to proactive clinic support as the most important facilitator, specifically, clinics that took the initiative to schedule the appointment in advance. More than 60% of participants said that having the appointment placed on the calendar for them, along with reminders, is highly helpful.

"…As long as it's on the calendar and I'm getting like an email or a text message, I never miss appointments. I'm as regular as clockwork — just let's schedule it, even if it's twelve months from now and I will be there," said one patient.

Provider encouragement also mattered. More than half of participants said that positive, direct guidance from their doctor was a key motivator. "Proactive support from clinics, including assistance from patient navigators and advance scheduling of appointments, emerged as a key facilitator of follow-up completion," said Dr. Atuluru. "Understanding patient barriers and facilitators is critical to improving survivorship after cancer treatment."

The study opens important new questions. Which patients are most at risk of non-adherence? How can anxiety be addressed effectively within the constraints of routine clinical care? And can scalable navigation programs be designed to reach diverse patient populations, including those who don't speak English or lack reliable transportation?

Senior author Dr. Rachel Issaka and her team are already working on answers. "We are in the midst of a pilot study evaluating if nurse navigation or an interactive web-based education can enhance surveillance after colorectal cancer treatment," she said. "Findings from this work will inform a larger trial in this population to improve survivorship after cancer care."

This research was supported by the National Cancer Institute of the National Institutes of Health.

Fred Hutch/University of Washington/Seattle Children’s Cancer Consortium Members Drs. Veena Shakaran and Rachel Issaka contributed to this research.

Atuluru, P., Kwendakwema, C. N., Bell-Brown, A. M., Hopkins, T., Simianu, V. V., Shankaran, V., & Issaka, R. B. (2026). Patient Perspectives on Barriers and Facilitators to 1-year Surveillance Colonoscopy Completion in Survivors of Colorectal Cancer: A Multimethod Analysis. Diseases of the colon and rectum, 69(3), 442–452.