Kristen Lyons of Indianapolis ​​​​​​​says that, for her, being treated for breast cancer was in many ways the easy part. Diagnosed in July 2018 with stage IA invasive ductal carcinoma, the mother of three underwent surgery, radiation and chemotherapy. After she wrapped up treatment that November, she felt adrift without regular doctor’s visits.

She was dogged by fears of her cancer coming back. “I spent a lot of time searching for new lumps and bumps,” Lyons says. “I spent a lot of time calling, emailing, going to my doctor saying, ‘Hey, feel this thing.’ And they would tell me, ‘That’s nothing.’”

What Lyons was experiencing is known as fear of cancer recurrence. It’s both a common and entirely rational fear, says Robert Zachariae, who studies psychological and behavioral science at Aarhus University Hospital in Denmark. However, fear of recurrence can grow to overwhelm some cancer survivors, making it hard for them to enjoy life or leading them to overuse health care to ease their worry. “Others may respond in an opposite way. They sort of avoid tests to identify recurrence in a timely fashion because it triggers anxiety and stress,” Zachariae says.

Researchers are working to determine which patients would benefit from psychological treatment to help them with their fear of recurrence, and to test what interventions might be most effective. Zachariae and his colleagues published a meta-analysis of studies on psychological treatments for fear of recurrence in the Nov. 1, 2019, issue of the Journal of Clinical Oncology, finding evidence that therapy can be helpful.

The researchers analyzed 23 studies that examined the use of 25 psychological interventions for the treatment of fear of cancer recurrence. Nineteen of the interventions tested were forms of cognitive behavioral therapy. The researchers found moderate evidence that the psychological interventions led to small improvements in fear of cancer recurrence and that the improvements persisted months after the completion of the therapy. They also found that newer forms of cognitive behavioral therapy, sometimes known as third-wave therapies, were significantly more effective immediately after they were completed than traditional cognitive behavioral therapy, although the difference got smaller in the months following the interventions.

Traditional forms of cognitive behavioral therapy aim to change distorted thinking, Zachariae says, while the newer therapies focus more on changing the thinking process than the content of a person’s thinking. These therapies aim for acceptance, mindfulness and metacognition, defined as thinking about thinking. “It’s a different approach and it seems to be it could be more relevant when you’re dealing with an anxiety issue that’s not sort of irrational,” he says.

Phobias are irrational, but fear around the very real possibility of cancer returning is not. That’s one factor that led Shelley Johns, a clinical psychologist at the Indiana University School of Medicine in Indianapolis, to experiment with Acceptance and Commitment Therapy (ACT), one of the newer forms of cognitive behavioral therapy.

“This is a really tough problem, because we can’t talk people out of their fear. … I wanted to try to come up with some tools that people can use to turn down the volume on the disruption that fear of recurrence is causing in their lives,” Johns says.

ACT helps people identify and focus on their core values, Johns says. Rather than trying to dispel fearful thinking, which may be impossible, survivors learn to accept their thoughts and feelings while making behavioral choices consistent with their values. “I find that they can just bring the fear with them on the ride of their life, rather than letting the fear impede or stop their ride,” she says.

As part of a study published Sept. 20, 2019, in Cancer, Johns and her colleagues randomly assigned 91 patients who had completed treatment for nonmetastatic breast cancer to one of three groups. One group completed six weeks of ACT group therapy, while a second completed six weeks of group survivorship education classes. These education classes covered topics including symptom management, nutrition and the costs of cancer care. They assigned the third group of patients to “enhanced usual care.” These patients participated in a half-hour group coaching session with an oncology nurse and received resources, including the National Cancer Institute booklet Facing Forward: Life After Cancer Treatment.

The participants in the ACT group consistently reported reductions in fear of recurrence, Johns notes, with significant improvements reported immediately after the intervention and persisting a month after the intervention and six months after the intervention. At the six-month mark, reductions in fear of recurrence were significantly greater for participants who received ACT than for members of both other groups. Johns hypothesizes that ACT may have provided people with coping skills that persisted past the social support of the group meetings themselves.

However, Johns notes that more research needs to be done. “We got some tremendous results from this pilot, but it’s still a pilot and we have to realize that it’s not a definitive trial of ACT,” she says. She hopes to get funding for a larger study.

Zachariae and his colleagues would like to see more studies comparing ACT and other third-wave approaches. He would also like to deconstruct each type of intervention and compare effectiveness of component parts. “These therapies may have five or six different components, and what we usually see in psychotherapy research is that you lump everything together and you measure the effect of all these components together,” Zachariae. “But it might be that some of these components might even sort of work against each other.”

Tips for Coping

Resources are available to help with fear of recurrence.

Shelley Johns, a clinical psychologist at the Indiana University School of Medicine in Indianapolis, offers the following advice and resources for people who are dealing with fear of cancer recurrence.

  • Focus on the present moment. “Unhappiness—including fear—creeps into our awareness when we focus our attention on the unchangeable past or the uncertain future,” Johns says. Information on mindfulness can be found at mindful.org.
  • Be compassionate with yourself. “Treat yourself with as much kindness as you would treat a friend in need, a distressed child or an injured pet,” Johns says. Tips for practicing self-compassion are available at self-compassion.org.
  • Live in closer alignment with your values. “Living intentionally according to your values can ignite meaning and purpose in life even when fear is present,” Johns says. This worksheet offers information on clarifying one’s values.
  • Find a therapist. Johns says that cancer survivors whose fear of recurrence is interfering with their well-being can ask their health care team for recommendations for local therapists who have experience helping people who have been diagnosed with cancer. Survivors interested in Acceptance and Commitment Therapy can search for providers on a list​ provided by the Association for Contextual Behavioral Science.​

Lyons, who experienced fear of recurrence after her breast cancer treatment, participated in an ACT group that was moderated by Johns but was not part of her study. Whether it was one component of that program or the full experience, Lyons says that she’s seen such a lasting benefit that she hopes more cancer patients will have the opportunity for similar therapies after treatment.

“I’ve learned to take the fear along with me but not let it rule my life,” she says. “I’m going to choose to do something that’s more in line with my values, because living in fear is not in line with my values.” 

Jon Kelvey is a science journalist based in Maryland.​