For many cancer survivors, the end of treatment isn’t the end of the story. Some estimates suggest that up to half of adults who complete cancer treatment will experience chronic pain.  

Pain is often attributed to the biological toll of treatment, including nerve damage from chemotherapy, tissue injury from surgery, and the lasting effects of radiation. However, many patients report persistent pain even after their tissues have healed and there is no detectable ongoing injury. 

This disconnect has led researchers to look beyond tissue-based explanations and toward the biological, psychological, and social processes that shape how symptoms are experienced. 

New research, supported by the Stanford Cancer Institute Innovation Awards, suggests that fear of cancer recurrence may play a role in how pain develops and persists over time. This research was led by Lauren Heathcote, PhD, then a Stanford postdoctoral fellow in Laura Simons’s, PhD, pediatric pain lab, and Lidia Schapira, MD, director of the Stanford Cancer Survivorship Program.

A brief meeting, a lasting collaboration

In 2018, Heathcote first connected with Schapira for what was intended to be a brief coffee meeting. Instead, it became the foundation of a lasting collaboration.

Heathcote asked Schapira how chronic pain in cancer survivors was being addressed. Schapira, a medical oncologist, was initially surprised, noting that pain did not appear to be a major concern among her patients.

“Well, this is a good starting point,” Heathcote responded. “Because I bet it is [a major concern].”

As the conversation unfolded, Schapira began to reconsider how often pain may be overlooked in survivorship care and how little progress had been made in understanding or addressing it.

What we haven’t given enough thought to is why and how pain persists and whether we can change its trajectory over time.”

“What we haven’t given enough thought to is why and how pain persists and whether we can change its trajectory over time,” Schapira said.

Over coffee, a collaboration took shape. Heathcote brought expertise in pain mechanisms and experimental approaches from psychology and neuroscience, while Schapira contributed the clinical lens of oncology and survivorship care. Together, they set out to bridge the gap between clinical approaches to pain and patients’ lived experiences.

A broader model of pain

Pain and fatigue are consistently reported as major contributors to reduced quality of life after cancer treatment by interfering with sleep, limiting mobility, and disrupting work, study, and family life.

Heathcote explained that modern pain science has moved beyond tissue damage as the primary cause. Pain is now understood to arise from the interaction between biological and psychological systems.

“The nervous system, the brain and spinal cord, and psychological and emotional processes all interact with the body’s tissues to shape the pain experience,” she said.

Within that framework, fear can sustain symptoms over time.

“Fear and pain can reinforce each other in a cycle, and that [cycle] hasn’t been fully integrated into cancer care,” Heathcote said. “Much of cancer pain research is still largely biomedical, and we’re trying to bring it in line with what pain science already shows us.”

Longitudinal study of pain and fear of cancer recurrence

Heathcote and Schapira conducted a longitudinal study of young female survivors of breast and gynecological cancers. The study tracked both chronic pain and fear of cancer recurrence across time to explore whether fear contributes to the persistence of pain after treatment.

Nearly half of the participants reported chronic pain and fatigue, even more than two years post-treatment.

Heathcote noted, “We were interested in causal mechanisms that maintain pain over time. Importantly, we didn’t just recruit women who already had chronic pain. We wanted to understand if and when pain might develop in those who didn’t have it initially.”

The study found that fear of recurrence predicted future pain, but the opposite was not true. Pain did not significantly predict future fear.

“The study suggests that fear might play a role in maintaining long-term pain,” explained Heathcote.

The study's results align with the Cancer Threat Interpretation model, which suggests that fear of recurrence increases awareness of bodily sensations, resulting in amplifying the perception of pain.

Heathcote explained further, "People who are highly fearful of recurrence often monitor their bodies for signs. Pain, in particular, becomes a symptom they watch closely, and when you're hyper-aware, the pain can seem more intrusive, louder, and harder to ignore."

Fear of recurrence also increases general stress, which is known to worsen pain. Finally, survivors who are highly fearful may be less likely to engage in activities, such as physical exercise, that can reduce pain.

"If you avoid physical activity for fear of symptoms, it creates a vicious cycle," Heathcote said.

Rethinking the clinical conversation

At the end of treatment, many patients are left wondering how to recognize whether their cancer has returned. That uncertainty can set off the pattern of monitoring and hypervigilance associated with amplifying symptoms and pain. 

“Something that hasn’t been tested yet is whether a brief communication intervention, such as a clinician asking, ‘What do you think the pain means?’, might reduce fear,” Heathcote said.

How patients interpret pain also matters. When pain appears, people often assume the worst, which can also make it feel more intense. Clinicians order scans when patients report pain. If the results are clear, the clinician moves on, but one question remains unanswered: what does the patient think the pain means?

“Not everyone wants to talk about pain,” Schapira said. “There may be cultural stigma, shame, fear, or lack of language to explain it.”

Schapira believes clinicians should make conversations about pain a routine part of care. Patients may not raise the issue on their own, and clinicians pressed for time may not always ask. But sometimes, what a patient needs is not another test or treatment, but a conversation that helps them understand what their symptoms do and do not mean.

“Fear of recurrence, if it perpetuates or exacerbates pain, is something we can address,” Schapira said. “Just like nausea, you don’t ignore it.”