Fear of Cancer Recurrence: A Practical Guide for Clinicians

With increasing cancer survival, fear of cancer recurrence (FCR) is becoming a prominent clinical issue. FCR is prevalent, distressing, and long-lasting, and can negatively impact patients’ quality of life, use of health services, and adherence to follow-up recommendations. Novel targeted therapies may increase risk of FCR because of longer treatment duration and follow-up, increased prognostic precision, and omission of treatment based on genomic status. Oncologists can assess and screen for FCR using validated measures; provide adequate information about prognosis, signs and symptoms of recurrence, and behavioral strategies for risk reduction and follow-up; and warn patients and families that FCR may be an issue in survivorship. It is important to normalize FCR and encourage patients to discuss it if it is a concern. Patients with severe FCR should be referred to psycho-oncology staff, who can apply some of the novel psychotherapeutic interventions that have emerged to address this condition.

Introduction

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.[1] FCR has recently been defined as “fear, worry, or concern relating to the possibility that cancer will come back or progress.”[2] 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,[3] 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.[4] 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.[5] When severe, FCR can be considered to be clinically significant, and is unlikely to remit without clinical intervention.[4] 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.[2]

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.[7]

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.[4] 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.[7]

Interestingly, objective prognostic indicators or markers, such as tumor size and stage of disease, have not been found to be strongly related to FCR.[4] 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.[12] 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.[13] 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.[12]

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,[4] 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.[18]) Early models, based on the Common-Sense Model of Illness Representations,[19] 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.[20]

More recent models have all built upon the previous conceptualizations and share many commonalities. A model developed by Fardell et al[7] 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.[21] 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.[22]

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[23] 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.[24] 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.[25] 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.[26] 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.[27] 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.[28] 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).[29] 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.

Clinical Guidance

Acknowledgment of the emotional impact of a cancer diagnosis at the outset can be very helpful, as is responding to emotional cues from the patient and family (eg, nonverbal signs of anxiety or distress) in any consultation; for example, you might say, “It sounds like you have been worrying a lot about what this cancer will mean for your future. Can you tell me more about that?” This signals to the patient that attending to his or her worries and concerns is an important and usual part of cancer care. The response by healthcare providers to patients’ emotional cues is known to encourage patients to speak more freely about their feelings.[30]

We recommend screening for FCR, particularly at the end of treatment and during follow-up, when cancer survivors have less contact with the healthcare system. A variety of short, reliable, and valid instruments are now available that can be completed on paper or electronically. The Fear of Cancer Recurrence Inventory severity subscale,[31] comprising only nine items, is the only scale to date with clinical cutoff points that identify those with clinical levels of FCR requiring intervention. A score cutoff of ≥ 13 was initially recommended, but more recent work in Australia and Canada has suggested that a cutoff of ≥ 22 may be more suitable for identifying patients who require specialist psychological input.[32] A single-item screening question for FCR also seems promising.[33] Patients can complete one of these quick screens while in the waiting room, and bring the results into their consultation meeting. A high score can be used to trigger a conversation, and if appropriate, referral for psychosocial intervention.

It is also important to verbally ask the patient about FCR at key follow-up consultations, since some patients may more readily respond to a direct question than a request to complete a questionnaire. Reinforce with the patient that FCR is common, normal, and even helpful because some degree of worry about recurrence increases the likelihood of committing to follow-up monitoring and making healthy lifestyle choices. However, it is important to convey that severe levels of FCR need to be managed, so that this does not stop the cancer survivor and his or her family members from living full lives in survivorship. Emphasizing the importance of talking about FCR, rather than having patients feel they need to adopt “a positive outlook,” will reduce stigma and patient denial of anxiety. A question can be framed as follows: “Many people whom I see worry a lot about their cancer coming back. That’s normal and expected after a cancer diagnosis. But if the worry is distressing you, or is preventing you from getting on with your life, we should do something about it. There are things we can suggest to help you manage these worries. So, has this been a problem for you?”

Repeated assessment can also be informative, since natural fluctuations in FCR do occur, and while a single peak may not be concerning, sustained high FCR will need to be addressed.

The oncologist needs to effectively communicate:

• Prognosis and its basis.

• The most likely signs and symptoms of a recurrence (as well as those not likely to be related to cancer).

• Recommended behaviors to reduce risk (such as smoking cessation and exercise).

• Standard follow-up schedules and their rationale.

Patients who report being uninformed about these issues also report higher FCR.[34] A dedicated “end of treatment” consultation during which the clinician can address these issues and, when relevant, provide written information may be useful. If a survivorship plan is to be implemented, it can also be introduced at this time. Although it can be tempting to provide immediate reassurance about the low likelihood of recurrence/progression for patients with a good prognosis, patients with even the best prognoses may still experience severe FCR. Hence, it is important not to discourage expression of these concerns.

Patients can also be told that it is common to experience some emotional upheaval as they end treatment and lose the support provided by regular contact with oncology staff. Family members and friends can be encouraged to avoid putting pressure on patients to “be positive” and “get back to normal.” Indeed, both they and the patient are likely to be grappling with FCR for some time, and may need to develop “a new normal” that incorporates the cancer experience into their lives. It can be helpful to contact the patient’s primary care physician to encourage him or her to communicate similar messages to patients and their loved ones.

For those with high FCR, direction to appropriate resources, such as booklets and online interventions (Table 2), can be helpful. Avoid ordering extra tests to reassure the anxious patient. Readiness to do so can convey to the patient that the clinician is also very concerned about risk, and ultimately may compound patient distress and increase further requests for reassurance. In contrast, listening to the patient’s concerns and discussing the evidence supporting treatment decisions conveys a degree of professional confidence that can, in fact, be more reassuring than unnecessary testing.

Referral of selected patients to a psycho-oncologist (who will use some of the previously described intervention strategies) may be appropriate. However, psycho-oncology staff may need specific training in current FCR interventions if they have not already been exposed to them. Treatment teams need to assess the referral options available within their service, in the local community, and online, so that a clear clinical pathway can be established for this common problem.

In cases where psycho-oncologists are not available, patients may benefit from referral to a support group; such a setting will enable them to discuss their fears with others who have shared the same experience, and possibly be exposed to exemplars of positive coping. However, there is no robust evidence that support groups reduce FCR, so this cannot be recommended with confidence. In one qualitative study,[35] patient opinions were varied regarding the helpfulness of support groups. Some participants reported that talking about their FCR in support groups allowed emotional ventilation and provided the benefit of mutual support. However, others found attending support groups to be anxiety-producing because of the exposure to negative feelings, or thoughts about recurrence or death expressed by other group members.

In summary, FCR is common among patients and survivors, and at severe levels it can negatively impact quality of life, use of healthcare services, and associated healthcare costs. Oncologists can contribute to helping patients to recognize, discuss, and seek help for FCR. Further, by providing relevant information and support, oncologists can potentially help patients to lower their risk of developing chronic, severe FCR.

Financial Disclosure:The authors have no significant financial interest in or other relationship with the manufacturer of any product or provider of any service mentioned in this article.

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