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.
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.
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, 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. A single-item screening question for FCR also seems promising. 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. 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.
- Fear of cancer recurrence (FCR) is fairly common, normal, and distressing.
- FCR is not strongly linked with prognosis, and may even occur in individuals with a relatively good prognosis.
- Severe FCR does not improve without intervention, and oncologists can play an important role in helping patients to better manage it.
- Screening for FCR helps in detection of this condition and guides patient referral.
- Providing adequate information, normalizing FCR, encouraging disclosure, and making appropriate patient referrals are important ways that oncologists can contribute.
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, 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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