After a diagnosis of cancer, fear of cancer recurrence (FCR) is one of the most prominent concerns for patients, and a common experience for which they seek professional help or support. FCR has recently been defined as “fear, worry, or concern relating to the possibility that cancer will come back or progress.” Thus, FCR may be a problem both for patients with curable disease who fear recurrence and for those with advanced disease who fear progression. People with existing psychological disorders, such as generalized anxiety disorder or illness anxiety disorder, may be at higher risk for severe levels of FCR. However, the majority of patients with clinically meaningful levels of FCR do not meet the criteria for thoughts or behavior considered to represent a specific psychological disorder, suggesting that FCR is a unique and significant mental health issue in its own right. Mild FCR usually improves over time, and in these cases it is not a problem. However, if FCR becomes severe, it can have a devastating effect on health and quality of life.
Prevalence and Severity of FCR
FCR occurs along a spectrum ranging from mild to severe. At the mild end of the spectrum, people may experience occasional thoughts about cancer, with external triggers (eg, follow-up appointments, or hearing about a new diagnosis of cancer in a friend or relative) generating peaks of anxiety that persist for a few days and then resolve. At moderate to severe levels of FCR, people experience more frequent thoughts about cancer (perhaps more than once a week, and in the absence of triggers), a perceived inability to control these thoughts, and a strong sense of distress associated with them. On average, 49% of cancer survivors overall and up to 70% of vulnerable groups (such as young women with breast cancer) experience moderate to severe levels of FCR.[4,5]
About 7% of patients experience severe and highly disabling FCR. People with severe FCR report constant and intrusive thoughts about cancer, interpretation of mild and unrelated symptoms as a sign of recurrence, a conviction that cancer will return regardless of actual prognosis, and an inability to plan for the future due to worry that cancer may return and disrupt their plans. Depending on their coping strategy, they may overmonitor for signs of cancer activity, constantly search online for information related to their particular cancer and its treatment/prognosis, overuse health services in an attempt to receive assurance, and/or fearfully avoid screening and follow-up. When severe, FCR can be considered to be clinically significant, and is unlikely to remit without clinical intervention. A recent Delphi study involving experts in FCR identified the following characteristics as being associated with clinical levels of FCR: a preoccupation with the cancer returning or progressing; unhelpful coping behaviors; impairment in daily function; clinically significant distress; and limited capacity for making future plans.
Outcomes and Implications of FCR
The high prevalence and potential severity of FCR is concerning not only because of the distress it causes survivors, but also because of its impact on quality of life, on healthcare service use (and potential increased associated costs), and on adherence to follow-up recommendations. Data from cross-sectional studies have consistently shown an association between FCR and depression, poorer quality of life, and impaired daily functioning.[4,6] Those who cope by avoiding follow-up and screening may risk late diagnosis of recurrence and, as a result, shorter survival; in contrast, constant requests for tests and unnecessarily frequent contact with health professionals can result in significant costs to the healthcare system, and actually contribute to ongoing anxiety over the longer term.
Who is most vulnerable?
FCR has been documented in patients with breast, colorectal, testicular, head and neck, lung, endometrial, and thyroid cancer; sarcoma; melanoma; and Hodgkin and non-Hodgkin lymphoma, and is likely a concern for all cancer patients.[4,5,8,9]
A systematic review of FCR studies concluded that the people most vulnerable to this condition are newly diagnosed cancer patients and survivors who are younger and who have higher subjective risk perception, more severe side effects, and/or other anxiety conditions. Younger patients do not expect a cancer diagnosis, and once their sense of invulnerability has been challenged, they may interpret even low risks of recurrence as being high and frightening. People who have had experiences that made them feel unlucky (such as past trauma, or relatives developing and dying from cancer), as well as those with generalized anxiety disorder, may also have a higher subjective perception of risk and thus be more vulnerable to FCR. Side effects are a constant reminder of cancer and a potential source of worry, since they may be perceived as an indication of cancer returning.
Interestingly, objective prognostic indicators or markers, such as tumor size and stage of disease, have not been found to be strongly related to FCR. However, adjuvant treatment has been linked to increased risk of FCR. For example, two recent meta-analyses revealed that receiving adjuvant therapy in addition to surgery increased the risk of FCR,[10,11] perhaps because this made the cancer experience more prolonged and traumatic, and because treatment is more readily interpreted by patients as signifying serious disease than are tumor markers. More recently, it has been suggested that novel, tailored treatments may increase the risk of FCR. For example, targeted tyrosine kinase inhibitors for patients with advanced gastrointestinal stromal tumors (GIST) or chronic myelogenous leukemia are administered indefinitely, or until treatment intolerance or progression occurs, and for 36 months in those with localized GIST. Further, tests for recurrence or progression are frequent (quarterly). This prolonged and repeated exposure to treatment is already being clinically described as triggering high FCR, although cohort studies are not yet available. Similarly, as a result of genomic testing, cancer survivors may be presented with a high and more specific risk of recurrence, or the option to omit treatment on the basis of a low-risk genomic profile; both of these outcomes may potentially engender higher FCR.
Studies have shown that satisfaction with the quality of healthcare in survivorship influences FCR.[14,15] The findings indicate that low satisfaction with understanding information, as well as with symptom management and the coordination of care, were associated with higher FCR, offering a potential avenue for intervention.
Need for intervention
Longitudinal studies of cancer survivors show that FCR can be long-lasting, and without intervention it does not necessarily diminish over time, even when the risk of cancer recurrence is low. Patients report a high need for help with FCR—a need that appears to be unmet in routine care.[16,17]
Theories of FCR and Emerging Therapeutic Interventions
Over the past few years, several models have been proposed and used to guide therapies in FCR. (For a detailed discussion, see Sharpe et al, 2017.) Early models, based on the Common-Sense Model of Illness Representations, suggested that the people more likely to experience FCR were those who had a high emotional response to cancer and believed their cancer was more severe, long-lasting, and out of their control.
More recent models have all built upon the previous conceptualizations and share many commonalities. A model developed by Fardell et al proposes that for some people, normal worry about recurrence activates an unhelpful style of cognitive processing that creates a vicious cycle that ultimately increases the individual’s FCR. That is, some people believe that worry will protect them, might cause them harm, or is uncontrollable; as a result, they tend to ruminate, focus attention on themselves and their symptoms, become vigilant to perceived threats (cancer recurrence or progression), and try to suppress the worrying thoughts—all behaviors that can actually escalate FCR. These concerns are compounded in people who have vulnerability factors (such as prior losses, mental health problems) and when insufficient or inaccurate information is communicated about the risk of recurrence (Figure). Simonelli et al propose a very similar model. Heathcote and Eccleston also emphasize that people with ongoing symptoms (eg, side effects, lymphedema) who interpret their symptoms as harmful tend to ruminate about their symptoms and remain vigilant for ongoing signs and symptoms of their cancer returning.
A growing number of therapeutic interventions, based on these models, have demonstrated efficacy in reducing FCR (Table 1). Delivery formats have included face-to-face and group interactions, telephone discussions, and online sessions. Humphris and Rogers evaluated a face-to-face intervention with head and neck cancer patients based on Leventhal’s Common-Sense model. Herschbach et al in a rare intervention trial, addressing fear of cancer progression, evaluated two four-session interventions (cognitive-behavioral group therapy and supportive-experiential group therapy), both of which proved superior to a “treatment as usual” approach. Otto et al evaluated a generic gratitude intervention in 67 women with breast cancer; while the intervention had no effect on FCR severity, it did reduce death-related FCR and improved patients’ positive affect. Dieng et al tested a minimal psychologist-delivered intervention (a psychoeducational booklet plus three telephone calls to assess and meet needs) for survivors of early-stage melanoma. Lichtenthal et al trialed an eight-session computerized program that trained participants to make benign interpretations of cancer-related ambiguous sentences and to focus their attention away from cancer-related threats. van de Wal et al examined a blended cognitive behavioral therapy intervention, used in the SWORD (Survivors’ Worries of Recurrent Disease) study, which combines individual face-to-face sessions, e-consultations, and access to an interactive therapy website in an effort to ameliorate FCR. Finally, Butow and colleagues evaluated a face-to-face intervention called Conquer Fear, which combines components from metacognitive therapy (challenging the value placed on worry about recurrence or the avoidance of such worry) and acceptance and commitment therapy (focusing on accepting what cannot be changed and committing to acting in accordance with one’s values). Each of these treatments was shown in randomized controlled trials to have an impact on FCR. Notably, however, all but one of these interventions (and, indeed, most FCR studies in general) were developed for, and tested in, patients with early-stage cancer who had been treated with curative intent.
Implications for oncologists
FCR is a critical target for optimal survivorship care. Awareness of FCR can help clinicians to be prepared for the potential effects of chronic cancer treatments on the emotional well-being of their patients, to recognize that intensive patient monitoring and collection of personalized risk information may be needed, to facilitate better support of patients, and to identify patients who may benefit from new evidence-based psychological treatments for severe FCR. All members of the cancer team—from surgeons, to medical and radiation oncologists, to nurses and allied health professionals—can contribute directly to addressing FCR through effective patient communication, as well as patient referral, if necessary, to expert psycho-oncology care.
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