Helping Patients Cope with Fear of Cancer Recurrence

For many cancer survivors, normal aches and pains can trigger fears that the disease has returned, and those fears can lead to emotional distress and unhealthy behaviors, among other possible health effects.

“When patients are left on their own to make meaning out of ambiguous symptoms, they understandably tend to frame the symptoms as a threat,” says Daniel Hall, a Harvard Medical School assistant professor of psychiatry at Massachusetts General Hospital. Hall has spent much of his career helping patients manage their fear of cancer recurrence through his research and clinical practice, including through his leadership of a recent clinical trial that studied the effectiveness of specific mind-body interventions. Harvard Medicine editor Amos Esty spoke with Hall about what he’s learned about helping patients accept the uncertainty of life with cancer. The interview has been edited for length and clarity.

To start, could you define fear of cancer recurrence?

There’s a clinical definition of fear of recurrence that an international consensus panel published in 2016. It’s defined as fear, worry, or concern about cancer returning or progressing.

In the U.S., one in three women and one in two men will be diagnosed with cancer at some point in their lives. With so many people living with a cancer diagnosis, we’ve been able to study fear of recurrence and understand clinical techniques that work best for managing it. Additionally, we have been able to examine fear of recurrence in other patient populations living with illness-related uncertainty, including patients with myalgic encephalomyelitis/chronic fatigue syndrome and rheumatic disease. 

How is fear of recurrence different from the anxiety that anyone must feel if they’re diagnosed with a serious condition?

First, any part of the illness experience — from screening through diagnosis and treatment — can be life-changing. In other words, it’s not just a diagnosis. The screening process can be the starting point for many people in thinking about uncertainty and their health.

From my research with cancer survivors and patients living with chronic illnesses, we’ve learned a lot about the features of fear of recurrence and how it’s different from anxiety. Anxiety is a broad emotional response to real or perceived danger, and it can come up in response to a variety of life demands. Fear of recurrence is a form of anxiety, but in contrast to established anxiety disorders, it is both common after diagnosis of a life-threatening or chronic illness and unique to individuals with a real, lived history of illness — and unlike distress, it generally does not decrease over time if left untreated.

As with other forms of anxiety, treatments have been developed specifically for addressing the unique presentation of fear of recurrence.  Our research team and others have published systematic reviews and meta-analyses of psychotherapy and mind‐body interventions for fear of recurrence in cancer.  We have learned that fear of recurrence may require a more nuanced intervention approach than standard anxiety treatment, which consists of antianxiety medications and/or cognitive behavioral therapy (CBT).

CBT typically focuses on reframing irrational fears, exposure therapy, or behavioral activation. Although these coping strategies are evidence‐based for certain anxiety disorders, such as generalized anxiety disorder and panic disorder, they may be ineffective and invalidating for survivors faced with ongoing uncertainty.

What are the health effects on patients of fear of recurrence?

One of the interesting things we’ve discovered about fear of recurrence is that it is best described as a cyclical process, involving physical symptoms, emotional distress, and behavioral changes. 

Survivors live with a variety of physical symptoms due to the illness or medications, and they continuously evaluate these symptoms as a potential danger or threat, which in turn generates fearful emotions like anxiety, worry, and hopelessness, and fearful behaviors like seeking reassurance impulsively, avoidance of medical appointments, insomnia, and alcohol use. These emotions and behaviors can often worsen physical symptoms, reinforcing the cycle of fear of recurrence.

I believe that part of the solution for managing fear of recurrence is breaking this cycle. In addition to teaching survivors evidence-based practices in our program, we may also place referrals for addressing sleep, nutrition, and physical activity if these behaviors have changed since illness diagnosis.

Paradoxically, the more information we gather about our health, the more complex the answer often becomes.

So seeking information about symptoms can actually contribute to this cycle.

One thing we often ask illness survivors is, Do you find yourself consulting Dr. Google? Paradoxically, the more information we gather about our health, the more complex the answer often becomes. Having more information usually doesn’t resolve uncertainty; it generates it.

We’re really trying to help patients accept that there is no definite answer. Before seeking an answer online, we encourage survivors to consider their reasons for seeking new information. If the reasons aren’t clear, or a survivor isn’t sure how they would act on any new information, it may be best to stop and consider an alternative coping strategy.

How do you treat fear of cancer recurrence?

First, we need routine surveillance so that fear of cancer recurrence doesn’t go unmanaged. It can be easily and quickly identified with brief, single‐item screening instruments. Because “scanxiety” is common before, during, and after cancer surveillance, this would be an ideal time to assess survivors.

Next, we need referrals for evidence-based skills. It turns out that education about a patient’s risk of recurrence is not evidence-based for treating fear of recurrence and may be invaliding. So what works? Research has demonstrated that the skills that work best for managing fear of recurrence include reframing uncertainty about one’s health, scheduling time for worry during the daytime, eliciting the relaxation response using deep breathing and meditation, and developing healthy behaviors that can affect clinical outcomes, including sleep, physical activity, nutrition, and smoking. Certain positive psychology strategies, such as creative expression, humor, and noting appreciation, may also be useful for managing fear of recurrence.

With funding from the National Center for Complementary and Integrative Health, I’ve been fortunate to lead research testing the integration of cognitive behavioral, mind-body, and positive psychology skills into a cohesive, entirely virtual program. We’re calling the program IN FOCUS, which is short for intervention for fear of cancer recurrence and uncertainty in survivorship. The content is adapted from an eight-week resiliency program that was developed at HMS and the Benson-Henry Institute for Mind Body Medicine at Mass General. 

We just completed the first pilot randomized control trial of this program with sixty-four survivors of various cancers who have elevated fear of recurrence. Our findings were presented at the Society for Integrative Oncology conference last September. The manuscript with our main outcomes is currently under review, but briefly, we learned that IN FOCUS is feasible, acceptable, and seemingly beneficial compared to a community group referral. Importantly, the program resulted in robust reductions in fear of recurrence by two months and higher resiliency by five months.

What’s the role of clinicians working directly with cancer patients and survivors in helping them deal with fear of recurrence?

First and foremost, clinicians should know that it’s acceptable to patients to be asked about fear of recurrence. Clinicians may be nervous about bringing it up, but patients find it therapeutic and validating to be asked. It’s good to just name it.

Next, clinicians can offer referrals for empirically supported treatments, including the treatments I mentioned earlier.  At Mass General, we are fortunate to have dedicated clinical programs with mental health providers trained in these skills, including the Behavioral Medicine Program and the Center for Psychiatric Oncology and Behavioral Sciences.  Clinicians outside of the Mass General Brigham system can identify referrals for local providers through Psychology Today.  I also work with local organizations in Massachusetts that have access to survivors throughout the state, including the Ellie Fund and Survivor Journeys, and they have free resources for supporting survivors with fear of recurrence.

Ideally, I would love to build clinical and research training programs across all of the Harvard-affiliated hospitals for addressing fear of recurrence.  Along with colleagues in the Mass General Health Promotion and Resiliency Intervention Research Center, we recently published a consensus statement in the journal Cancer calling for United States cancer bodies to establish guidelines for the clinical management of fear of recurrence. I am grateful for the patients who partner with us to give us the chance to do this work and hopeful that we are beginning to move the needle.

Image: John Soares