Getting Out of the Woods: Strategies to Cope With Fear of Cancer Recurrence

When Aleah Hockridge was undergoing cancer treatments in spring 2015 for stage 3a breast cancer, the then 31-year-old resident of Santee, California, longed to hear the words “no evidence of disease.”

However, when those words finally came 15 months later, Hockridge didn’t breathe a sigh of relief. Instead, she worried — a lot.

“For the first two years, I couldn’t shake the idea of the cancer coming back or spreading."

Even hitting the five-year milestone in February 2020 didn’t ease Hockridge’s fears. “I never feel like I’m out of the woods,” she says. “I don’t know if I’ll ever feel like this is behind me.”

When Fear Takes Over

It’d be hard-pressed to find a cancer survivor who hasn’t occasionally pondered their vulnerability to a cancer recurrence or metastasis.

Although many individuals eventually move past this worry, some survivors develop what experts call a fear of cancer recurrence (FCR). Their persistent worries, fears and anxiety consume their thoughts, negatively affecting their ability to get on with their lives.

This preoccupation about a cancer recurrence makes them hypervigilant to any physical symptoms that hint that the cancer is back or progressing.

“Fear of cancer recurrence is more intense and persistent than ‘scanxiety,’ which goes away after a scan. It’s also different from post-traumatic stress disorder, which causes you to relive past events,” says Heather Jim, a clinical psychologist at the Moffitt Cancer Center in Tampa, Florida.

“A survivor with fear of cancer recurrence ruminates about future events they have no control over. Even though a recurrence may never happen, they can’t break free from this cycle of worry.”

As many as 2 in 3 cancer survivors have FCR, according to findings from a 2022 study published in the European Journal of Oncology Nursing.

Despite its pervasiveness and the fact that this fear has certainly plagued some survivors, it wasn’t until the early 2000s that experts recognized FCR as one of the biggest unmet needs among cancer survivors.

That’s when a panel of psychosocial-oncologists developed a Fear of Cancer Recurrence Inventory (FCRI). This 42-item questionnaire uses a scale of 0 (not significant) to 4 (very significant) to determine how a person thinks about a cancer recurrence. There’s also the FCRI-Short Form (FCRI-SF), with nine questions.

For researchers, the FCRI provides a uniform way to measure FCR among survivors. It also gives clinicians a tool to gauge when a person needs help.

Normal or low levels of FCR can also be helpful, as they may motivate a survivor to get follow-up scans and examinations and make healthy lifestyle changes such as exercising more or changing their diet.

It’s those with clinically significant results who worry Sophie Lebel, a clinical psychologist and professor of psychology at the University of Ottawa in Canada.

“The more severe the fear — meaning an almost daily preoccupation with cancer recurrence — the greater the negative impact on quality of life,” Lebel explains. “Studies, including my own, show a strong correlation between clinical fear of cancer recurrence and depression, anxiety, distress and post-traumatic stress symptoms (such as) hypervigilance, intrusive thoughts and panic attacks.”

Lebel says she often sees patients who have adopted a what’s-the-point attitude.

“They’re unable to plan a vacation, return to work or buy new clothes for fear that cancer will interfere with their plans.”

Anyone on the receiving end of a cancer diagnosis can experience FCR, regardless of gender, race, cancer type, stage or prognosis. But results from a study published in the Journal of Cancer Survivorship suggest that the fear and its impact may be greatest among young adult cancer survivors.

“Perceiving a greater number of years ahead of them may be interpreted as more opportunity for the cancer to come back or spread and a greater burden to remain cancer free,” explains Maurade Gormley, an assistant professor at the University of Connecticut School of Nursing in Mansfield.

Gormley’s studies on genomic testing for risk of recurrence among hormone receptor-positive breast cancer survivors found that those with a greater risk of recurrence had higher FCR; however, some still had a disproportionately high level of fear, even when their genomic test results indicated a low risk of recurrence.

“Factors such as how the individual perceives their illness and its consequences may be more important than their objective risk of recurrence,” she says. “This suggests that patients with cancer may benefit from closer follow-up of their emotional response to diagnostic and prognostic testing, regardless of their individual risk of recurrence.”

This need for improved communication is especially crucial when a patient transitions from active treatment to survivorship.

“I wasn’t prepared for what life would be like when the routine of scans, treatments and doctor visits ended,” says Keith Tolley, a resident of Warwick, Massachusetts.

Tolley was 61 years old in June 2017 when he was diagnosed with stage 3 melanoma. A year and a half later, the cancer spread to his liver and then to other areas. He underwent surgeries, an immunotherapy clinical trial, radiation therapy and additional immunotherapy treatments, scans taken in July 2020 showed a complete response to the treatments.

After his treatments ended, Tolley found himself occasionally struggling with the loss of security he felt while receiving regular medical care.

“It can be a struggle to shake that feeling of vulnerability and fear,” he says. “Early on, there were times when I would wake up in the middle of the night, worrying about the cancer coming back.”

Sleep problems, fatigue and pain are common issues among individuals with FCR. These symptoms can drive them to see their doctors more often, seeking reassurances that everything is OK. These actions can unnecessarily fuel anxiety and lead to higher health care expenses.

After Hockridge had a couple of scans to look for the source of back pain that she was sure was metastatic bone cancer (it wasn’t), she made a new rule.

“I track any unusual symptoms in a journal for two weeks and only call my oncologist if the symptoms worsen or don’t go away.”

Overcoming the Fear

When thoughts of a cancer recurrence become so intrusive that they affect the ability to function, enjoy life or plan for the future, mental health counseling can help.

Studies suggest that clinically significant FCR won’t get better over time without treatment, and one of the most effective treatments is cognitive behavioral therapy (CBT).

“(CBT) gives you the tools to change negative thought patterns by breaking down what makes you anxious or scared and finding healthy ways to think about and manage them,” says Lynne Wagner, psychologist and professor of social sciences and health policy at Wake Forest University School of Medicine in Winston-Salem, North Carolina, who is conducting research on effective treatments for fear of recurrence.

One way to do this, Wagner says, is by scheduling worry sessions.

“You set aside five to 10 minutes every day for three weeks to think about your fears and how you would handle a situation, should it come true,” she says. “Push aside any fears that crop up outside the session (or write them down) until it’s worry time. You decide when you’re going to worry. The sessions challenge the idea that worrying gives you control over a situation or its outcome. You learn to say, ‘Let me focus on what I can control’ whenever intrusive thoughts creep in.”

Wagner also teaches her patients how to use diaphragmatic breathing exercises at the end of each worry session to help ground them.

“Deep breathing, mindfulness and meditation are great tools for coping with fear of cancer recurrence,” she says. “In some ways, a worry session is a type of mindfulness. The goal isn’t to change a thought but to become more comfortable with it.”

Facing his fears head-on is one way Tolley copes.

“I analyze a fear to figure out what I’m feeling and why,” he explains. “I try to determine (whether) this fear is driven by something I can or cannot control and whether it’s based on what is actually true or what I’m imagining to be true.”

Tolley also sticks to a commitment he made to himself to never go through this journey alone. “When I can’t shake fear or anxiety, I talk to someone in my support system,” he says. “(Often), just verbalizing the fear to someone else takes away its power.”

Tolley learned some of these strategies through a survivorship program at his cancer center. But many centers, and even cancer specialists, are just now recognizing the importance of talking to cancer survivors about FCR.

Psychosocial-oncologists are encouraging a two-pronged approach to raise patient awareness about FCR.

The first step involves educating patients during and after treatments about the signs of clinical FCR and when to seek help. This educational step also includes making sure patients understand their actual risk of recurrence based on their unique diagnosis and what signs to look for.

The second step encourages cancer care teams and primary care physicians to use the FCRI to identify those who need help.

However, finding that help may still be a challenge, Lebel admits.

“This is still a developing field, so it’s often difficult to find a therapist who has experience helping people overcome this fear,” she says.

If your cancer center doesn’t have a social worker or therapist who can help, Lebel recommends looking for a provider who specializes in treating anxiety and depression with CBT and mindfulness techniques.

“There’s strong evidence that these interventions help, and you don’t need a lifetime of therapy,” she explains. “Many people see improvements after doing six weeks of once-a-week group sessions, or you can do personal sessions or even teletherapy.”

Hockridge tried teletherapy sessions during the height of the pandemic but decided they weren’t for her. “I’ve found some healthy ways to cope, like yoga, mindfulness and challenging myself to try new things like surfing and kayaking,” she says. “It’s been a lot of trial and error, and I still struggle.”

That struggle intensified this year while Hockridge was planning her fall wedding.

“The fear of cancer recurrence comes back anytime I’m faced with big life decisions or changes,” she says. “I’m so grateful that I’m here to marry my soulmate and celebrate with our families. And yet, I have thoughts like, ‘Should we be spending money on a wedding if we need it to pay for future cancer treatments?’” Hockridge likens her fear to an invisible boulder hanging perilously from a rope above her head.

“I try to pretend it’s not there because when I look up, the rope looks more frayed,” she says. “I fight the urge to look. Instead, I do what I can to cultivate joy, reduce stress and keep my eyes focused on the future. I must choose to believe that the boulder won’t come crashing down.”

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