Helping Cancer Survivors Cope With Fear of Recurrence

It’s common for patients to fear that their cancer will return. Breast cancer is the most prevalent form of cancer, so it makes sense that fear of recurrence among its survivors is especially widespread.

Oncologists say that some level of anxiety about recurrence among survivors of breast cancer can be beneficial, perhaps motivating patients to exercise or embrace a healthy diet. However, for many survivors of breast cancer, this fear can reduce their quality of life, potentially leading to unhealthy coping mechanisms.

Such fear is “a daily emotion,” one patient reported as part of a recent study of survivors of breast cancer. “Almost every life domain was being impacted by fear of recurrence for some people,” explained the study’s senior author Shelley A. Johns, PsyD, a researcher-clinician with the Regenstrief Institute in Indianapolis.

Fear of breast cancer recurrence severe enough to negatively affect patients’ lives seems to be very common. To help survivors of breast cancer cope with or avoid being harmed by that fear, Johns and other experts advise based on their research and experiences caring for patients.

‘Getting Out of the Dark’

A growing body of research explores fear of cancer recurrence in general and among survivors of breast cancer specifically.

Johns noted that 50% of survivors of breast cancer are thought to have moderate to severe fear of recurrence — fear “that’s disrupting their lives or their functioning in some way,” she said — based on a 2022 meta-analysis. Overall, 45.1% of survivors of cancer are believed to have moderate to severe fear of recurrence, according to the same study.

Given that 7.8 million women worldwide live with breast cancer, and the survival rate in the United States is 91%, a great many survivors of breast cancer may find themselves experiencing fear of recurrence.

What’s more, a 2023 study linked fear of cancer recurrence to mental health problems, including symptoms of anxiety, depression, and emotional distress.

Although Johns acknowledged that her recent study wasn’t the first to explore the qualitative experiences of survivors of breast cancer, she said it has a larger sample size, with 347 women completing the open-ended survey, and is one of the first to sort and characterize responses by survivors’ score on a validated measure of fear of recurrence.

Survey participants answered three questions: How fear of recurrence was currently affecting their daily life, what they were currently doing to cope with or manage that fear, and what they hoped to gain from participating.

About 74% of survey participants reported moderate to high fear of cancer recurrence, according to the study. They described impacts on their emotions, their relationships, their work and families, and other areas of their lives. While many reported stress, irritability, and sadness, one participant wrote that she would “sit for hours doing nothing.” Others said fear of cancer recurrence disrupted them while they were trying to do their jobs or spend time with their loved ones. One survey participant said she joined Johns’ study for help “getting out of a dark place,” a quote that is part of the paper’s title.

The new research also highlights the potential motivational impact from mild fear of recurrence. “It motivates me to maintain healthy habits,” one woman responded. “Such as eating five servings of fruits and vegetables, working out, and drinking less alcohol. It also motivates me to maintain mental health and physical health.”

‘Patients Want to Hear From Peers’

Ann H. Partridge, MD, MPH, a medical oncologist specializing in breast cancer at the Dana-Farber Cancer Institute in Boston, said the study shows “deeper than we already knew” how some worry about recurrence can prompt patients to make healthier decisions. Oncologists may be able to use the results as a model for their own patients, she said.

“Patients want to hear from peers and people who’ve been there, done that — they don’t want the medical establishment telling them what to do from afar,” Partridge said. “It’s very helpful to hear this qualitative work from other patients in obviously a very well-conducted study.”

Joanna J. Arch, PhD, from the University of Colorado Boulder, concurred. “It’s really exciting to see a qualitative study with the very robust sample size that Dr Johns’ study has, and without sacrificing the richness of the qualitative data she’s soliciting,” Arch said.

Partridge noted that fear of recurrence is not irrational, particularly for survivors of the most common breast cancer, hormone receptor–positive, which can recur 20 years later. Indeed, young survivors of breast cancer report more intense fear of cancer recurrence, according to a 2023 study Partridge co-authored.

For most, fear of cancer recurrence declines with time. “I had a patient tell me once that it took her about 5 years before she didn’t think about her breast cancer every day and didn’t wake up and have a feeling of, ugh,” Partridge said.

Others may benefit from referral to mental health counselors. Partridge said “empathetic conversations” are important, and so are screenings for conditions such as depression and anxiety, which are linked to greater fear of recurrence. The screenings can be conducted by someone other than the doctor, both to save time and to bring out information. “Not every patient is going to talk about it,” she said.

Normalize and Validate

First, oncologists should “normalize and validate” the fear of survivors of breast cancer, Arch added, by informing patients that their concerns are common and that they can seek help if the fear ever starts to interfere with quality of life. Multiple studies have recommended such a normalize-and-validate approach.

Oncologists can also ask patients to use their fear as motivation to take care of themselves, and they can make the appropriate referrals when patients need help, Arch said. Telling patients what to look for can also help them as they go through self-exams, screenings, and appointments.

For hormone receptor–positive breast cancer in particular, oncologists can explain the importance of endocrine therapy medication and also talk about the potential side effects as well as how to mitigate them, Arch observed. “Many oncologists do that already, and that is wonderful, but many do not,” she said. Arch co-authored a 2023 paper demonstrating an effect for interventions to promote endocrine therapy adherence.

Tailor a Unique Plan to Each Survivor

As for Johns, she said oncologists can help survivors cope by asking more in-depth questions about how fear of recurrence is affecting their lives and then making the appropriate referrals if necessary.

“I would invite oncologists to talk with their survivors about what they can do to reduce any behaviors that may increase risk of recurrence, such as smoking, excessive alcohol consumption, lack of physical activity, and obesity,” Johns added. They can then try to tailor a unique plan of specific action steps for each survivor based on their risk level, she said.

After completing the survey, participants in Johns’ study were randomly assigned to one of three behavioral interventions to address fear of recurrence. The interventions were 6 weekly sessions of acceptance and commitment therapy, 6 weekly sessions of cognitive behavioral therapy, or a single session of survivorship coaching. The outcomes will be available in the year ahead, according to Johns.

Oncologists may be able to glean additional lessons from the next phase of the research.

“The results of the intervention will be extremely valuable for guiding patients and providers toward effective mitigation strategies,” Rachel Jimenez, MD, a radiation oncologist specializing in breast cancer at Massachusetts General Hospital, Boston, told Medscape Medical News.

Johns, Partridge, Arch, and Jimenez declared no conflicts of interest.