Fear of cancer recurrence ‘very common and requires attention’

For survivors of cancer and its treatment, fear of disease recurrence is an overarching struggle, even years after active treatment.

“While patients are in treatment, they are usually consumed by this and do not have time or space to fully process their emotions,” Yvonne Luigjes-Huizer, MSc, of Helen Dowling Institute in the Netherlands, said in an interview with Healio. “Often, it is some time after the treatment is completed — weeks or even years — that they start to feel the burden of their fears. It is helpful if, at that point, they are already aware of the opportunities for support that exist.”

Luigjes-Huizer and colleagues conducted a systematic review and individual participant data meta-analysis to better understand the prevalence and severity of fear of cancer recurrence. They evaluated data from 46 studies that included 11,226 participants from 13 countries.

Luigjes-Huizer spoke with Healio about the results of her analysis and the need for better patient-provider communication around fear of cancer recurrence.

Healio: How common is fear of recurrence in patients with and survivors of cancer?

Luigjes-Huizer: In our study, we found that 59% experience moderate fear and 19% experience clinical fear. The numbers are very similar for patients and survivors. In other words, it is very common and requires attention from health care professionals.

Healio: How did you select the studies used in your review?

Luigjes-Huizer: We included all studies that used the Fear of Cancer Recurrence Inventory (FCRI) and included adult cancer survivors or patients. If studies selected respondents based on the severity of their fear, such as for intervention studies, these were not included for the main outcome, because they are not representative for the general cancer population.

Healio: Your study showed fear of cancer recurrence decreased with age. Why do you think this is?

Luigjes-Huizer: When people are young, they often have many plans and ambitions and may also have more responsibilities, such as small children. As people age, they can already look back on the life they have lived and be more accepting of becoming ill. Elderly people have explained to me that they know they are nearing the end of their life and, therefore, the idea of cancer is less scary to them. In a way, they have less to lose.

Healio: Why do you think women had more fear of cancer recurrence than men?

Luigjes-Huizer: In general, women report greater fear and are more likely to develop anxiety disorders than men. The case of fear of cancer recurrence is no different. There may also be a social component, with some women feeling greater anxiety about the consequences of their treatment and/or death on their loved ones, especially small children.

Healio: Should providers regularly ask cancer survivors about any fear of recurrence they might have?

Luigjes-Huizer: Yes, I think it is an important topic to discuss, though this also can be done in more general terms, such as “How are you coping with everything you have been through?” Many patients and survivors do not take initiative to discuss fear of cancer recurrence with their doctors, because they think it is not their doctors’ role or they think the fear is natural and nothing can be done about it. We recommend providing brief psychoeducation about fear of recurrence to all cancer survivors and patients, to normalize the fear and help individuals seek support when they need it, even if they are no longer undergoing hospital-based treatment or surveillance. It also is helpful if health care providers regularly discuss the mental well-being of their patients to actively provide space for patients to share their fears and other emotions.

Healio: In what other ways can providers help prevent or address fear of cancer recurrence among their patients?

Luigjes-Huizer: Health care professionals can provide advice on managing worry and/or referral to a psycho-oncologist if the fear is severe. Also, for many patients, creating space to share their fears helps a great deal. In addition, some patients can be helped with education on recurrence symptoms and clear prognostic information. Not knowing which symptoms are alarming can make any symptom distressing, and not knowing the chances of cancer recurring can increase anxiety. However, some patients prefer not to know, so it is always good to check. It can also help to discuss the checkup schedule with the patient. Explaining why a certain schedule is sufficient can help patients feel more at ease. Some patients want more checkups because they feel at risk, whereas some prefer fewer because the checkups themselves cause a great deal of stress. Sometimes, in consultation with a doctor, alterations to a checkup schedule can decrease fear of cancer recurrence.

Healio: What is next in your research on this topic?

Luigjes-Huizer: We looked at patient-reported needs and the extent to which they are being met. While almost all patients who experience fear of cancer recurrence desired some kind of support, it was encouraging to find that social support systems are fulfilling a significant and helpful part of this need. Still, there are gaps, especially regarding information about fear of cancer recurrence and access to psychological care or coaching.

Effective psychological interventions have been developed but may not always be the right fit for patients. Considering the large number of patients experiencing fear of cancer recurrence, it’s probably not feasible to provide everyone specialized psycho-oncologic treatment. It also may not be necessary, because for many patients, the fear is moderate. We aim to develop interventions that can decrease the burden of fear for these patients, while also preventing the development of more severe fear. We are currently researching the effectiveness of a short, blended primary care intervention in which patients use an online program with information, videos and exercises about managing fear and have three to five video consultations with a mental health worker. The initial results are promising, both in terms of the severity of fear decreasing and patient satisfaction.

For more information:

Yvonne Luigjes-Huizer, MSc, can be reached at Helen Dowling Institute, Professor Bronkhorstlaan 20, 3723 MB Biltoven, Netherlands; email: y.l.huizer@umcutrecht.nl.