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When fear of cancer recurrence becomes a clinical issue: a qualitative analysis of features associated with clinical fear of cancer recurrence
Abstract
Purpose Fear of cancer recurrence (FCR) is a common experience for cancer survivors. However, it remains unclear what characteristics differentiate non-clinical from clinical levels of FCR. The goal of this study was to investigate the potential hallmarks of clinical FCR.Methods A convenience sample of 40 participants (n = 19 female) was drawn from another study (Lebel et al. in Qual Life Res 25:311-321. doi: 10.1007/s11136-015-1088-2 , 2016). The semi-structured interview for fear of cancer recurrence (Simard and Savard in J Cancer Surviv 9:481-491. doi: 10.1007/s11764-015-0424-4 , 2015) was used to identify participants with non-clinical and clinical FCR and qualitative analysis of these interviews was performed.Results Individuals with clinical FCR reported the following features: death-related thoughts, feeling alone, belief that the cancer would return, experiencing intolerance of uncertainty, having cancer-related thoughts and imagery that were difficult to control, daily and recurrent, lasted 30 minutes or more, increased over time, caused distress and impacted their daily life. Triggers of FCR and coping strategies did not appear to be features of clinical FCR as they were reported by participants with a range of FCR scores.Conclusions While features of clinical FCR found in this analysis such as intrusive thoughts, distress and impact on functioning confirmed previous FCR research, other features spontaneously emerged from the interviews including "death-related thoughts," "feeling alone," and "belief that the cancer will return." The participants' descriptions of cancer-specific fear and worry suggest that FCR is a distinct phenomenon related to cancer survivorship, despite similarities with psychological disorders (e.g., Anxiety Disorders). Future research investigating the construct of FCR, and the distinguishing features of clinical FCR across a range of cancer types and gender is required.
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“FCR is associated with worry, ruminations, intrusive thoughts, the use of maladaptive coping strategies such as avoidance and excessive reassurance-seeking, and impaired functioning and quality of life [1, 22].”
From Fear of cancer recurrence in breast cancer survivors carrying a BRCA1 or 2 genetic mutation : a cross-sectional study (2024) · cites this paper as [22]
In the citing paper
“Fear of cancer recurrence has been associated with greater depression and anxiety symptoms, reduced quality of life, reduced engagement in social activities, and limited coping [13, 17, 62, 63].”
From Fear of depression recurrence among individuals with remitted depression: a qualitative interview study (2024) · cites this paper as [62]
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“Chief among these issues is the fear of cancer recurrence (FCR), which in its more severe expression has the fear of dying and suffering at its core.(1) FCR is defined as “fear, worry, or concern about cancer returning or progressing”.”
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“The transactional model of stress and coping has been proposed as a useful theoretical framework for thinking about and exploring individual experiences of health threat, including fear of new or recurrent melanoma.(25) According to this model, key components of the coping process include efforts to regulate the stres…”
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“Patients with FCR often have the following characteristics: Thoughts associated with death, feeling lonely, believing that cancer will recur, uncertain experiences, the emergence of uncontrollable thoughts and images associated with cancer, and the thoughts often occur every day and last longer than 30 min.(15) The pr…”
BackgroundLane, B., Garland, S. N., Chalifour, K., Eaton, G., Lebel, S., Galica, J., Maheu, C., & Simard, S. (2019) · Journal of Cancer Survivorship · doi:10.1007/s11764-019-00802-9 · Cited by 52
“Exposure therapies could be used to help patients manage fear in response to emotionally evocative stimuli [66], and the cognitive features of FCR indicate YAs may benefit from cognitive behavioural therapy (CBT) and acceptance-based approaches [67].”
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A research agenda for fear of cancer recurrence: A Delphi study conducted in Australia
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“In rank order, they were (1) intervention models; (2) definition, predictors, and outcomes of FCR; (3) detection and screening; (4) training for health professionals; and (5) reaching specific populations.”
BackgroundChecking Behavior, Fear of Recurrence, and Daily Triggers in Breast Cancer Survivors
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“Studies examining fear of cancer recurrence [33, 34] in DLBCL patients at different time points in their survivorship are also needed.”
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Tutelman, P. R., Chambers, C. T., Heathcote, L. C., Fernandez, C. V., Flanders, A., Patton, M., Schulte, F. S. M., Guilcher, G. M. T., Simard, S., MacLeod, J., et al. (2022) · Psycho-Oncology · doi:10.1002/pon.5879 · Cited by 30
“report hypervigilance and worry about bodily symptoms, such as pain and fatigue.(8,36) In this study, higher scores on the FCRI‐C were positively associated with children's attention to their bodily symptoms.”
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“Furthermore, patients with higher depressive symptoms10,13 and emotional representations at baseline were more likely to be in the high and increasing FCR class.25,32,33 Depression can undermine patients' ability to cope with FCR, and for instance, depressive coping characterized by feelings of helplessness and passiv…”
BackgroundInfluentialAssociation Between Daily Worry, Pathological Worry, and Fear of Progression in Patients With Cancer
Dinkel, A., Marten‐Mittag, B., & Kremsreiter, K. (2021) · Frontiers in Psychology · doi:10.3389/fpsyg.2021.648623 · Cited by 28
A qualitative exploration of the fear of recurrence among Taiwanese breast cancer survivors
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“Similarly, qualitatively, it was those with clinical FCR in a mixed cancer sample, that tended to report fears of death (Mutsaers et al., 2016).”
ResultFear of Cancer Recurrence in Differentiated Thyroid Cancer Survivors: A Systematic Review
Hampton, J., Alam, A., Zdenkowski, N., Rowe, C. W., Fradgley, E. A., & O’Neill, C. J. (2024) · Thyroid · doi:10.1089/thy.2023.0642 · Cited by 26
“13,14 15–17 FCR has been suggested as a prominent driver of HRQoL detriments 17–19 and may impact on decision-making regarding the extent of surgery in those with low-risk thyroid cancer.”
Fear of Cancer Recurrence and Sleep in Couples Coping With Early-Stage Breast Cancer
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“This may serve to increase predictability and reduce uncertainty, which may be associated with increased fear of cancer recurrence, anxiety, and distress [51, 52].”
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“It is a continuous process that occurs at all stages of cancer (11, 12).”
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Jiang, Y., Li, H., Xiong, Y., Zheng, X., Liu, Y., Zhou, J., & Ye, Z. (2025) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2025.1521555 · Cited by 21
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“9 In recent years, the term “fear of cancer recurrence” covering both recurred and metastatic cancer has gained acceptance and relevant clinical attention.”
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“As such, it is plausible that Chinese American breast cancer survivors with high levels of cancer fatal-ism may have greater fears of cancer recurrence, and in turn higher levels of psychological distress [16, 17].”
Fear of cancer recurrence in Korean women after breast cancer treatment: A mixed methods study
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The effect of symptomatology and mental wellbeing on quality of life in people with acoustic neuroma
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“, [59] showed that some people with a cancer diagnosis developed clinical fear of tumour return, presenting with features including loneliness, death-related thoughts, and uncertainty.”
Sawma, T., & Choueiri, P. (2022) · European Journal of Oncology Nursing · doi:10.1016/j.ejon.2022.102169 · Cited by 15
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“14,45 The CBT, including the correction of irrational cognitive concepts or behaviors, can be helpful in patients with FCR. 15 Although face-to-face interventions were more effective than short online or telephone interventions, CBT interventions of various formats, lengths, and intensities were…”
Risk Factors for Fear of Recurrence in Head and Neck Cancer Patients
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“FCR manifests through cancer-related thoughts and feelings, such as about death, loneliness, and uncertainty [9], and it is likely to impair the quality of life and mental health [10,11].”
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“controlling fear and responding to triggers (eg, physical symptoms, medical appointments),([15,16]) limited use of coping strategies,([14]) intolerance of uncertainty,([7]) and death-related thoughts.”
BackgroundAnxiety-Related Issues in Cancer Survivorship
Berry-Stoelzle, M., Mark, A. C., Kim, P. H., & Daly, J. M. (2020) · Journal of patient-centered research and reviews · doi:10.17294/2330-0698.1711 · Cited by 14
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“Patients with high FCR were more likely to have difficulty controlling frequent distressing thoughts, to believe more strongly that cancer would return and be able to describe more detailed thoughts related to death, and to experience anxiety and fear in the process [7, 8].”
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“FCR is described as persistent worry and uncertainty about the possibility of developing new or recurrent disease, and is associated with poorer psychological well-being (Koch et al., 2013; Mutsaers et al., 2016), self-care, and health-related quality of life (Crist and Grunfeld, 2013; Simard et al.”
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“18,52 Our patients worried about their loved ones.”
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“FoP and/or fear of recurrence involve repetitive cognitive intrusions and catastrophic beliefs about cancer, 8,9 and fear of the future and avoidance of future planning.”
Evaluating the capacity of the distress thermometer to detect high fear of cancer recurrence
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Emotion-focused therapy for fear of cancer recurrence: A hospital-based exploratory outcome study.
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“” FoR is considered a distinct phenomenon, and although similar to other psychological sequelae (such as anxiety disorders), it has its own unique elements.(46) Therefore, it is important that FoR is treated according to its own particular features separate to distress as although they may have similarities, they are…”
BackgroundButow, P. N., Müller, F., Napier, C. E., Bartley, N., Ballinger, M. L., Biesecker, B. B., Juraskova, I., Meiser, B., Schlub, T. E., Thomas, D. M., et al. (2021) · Psycho-Oncology · doi:10.1002/pon.5764 · Cited by 9
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“Indeed, ‘feeling afraid’, ‘uncontrollable worry’, and ‘restlessness’ are anxiety symptoms that are connected to the fear of cancer recurrence (Mutsaers et al., 2016; Yang et al., 2022).”
Babadostu, M. K., & Eyrenci, A. (2025) · Psycho-Oncology · doi:10.1002/pon.70076 · Cited by 10
“The manner in which individuals manage FCR, utilizing techniques such as avoidance, hypervigilance, or seeking help, also has a substantial impact on their overall experience [5, 6].”
Gumuchian, S. T., Boyle, A., Hazel, L. H., & Ellenbogen, M. A. (2024) · BMC Psychiatry · doi:10.1186/s12888-024-05588-4 · Cited by 6
“Fear of cancer recurrence has been associated with greater depression and anxiety symptoms, reduced quality of life, reduced engagement in social activities, and limited coping [13, 17, 62, 63].”
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“High levels of fear about cancer recurrence make patients more susceptible to psychological problems such as depression and anxiety and can even affect their sleep quality and daily functioning, severely impacting their quality of life [8, 9].”
Exploring the experiences and priorities of women with a diagnosis of ovarian cancer
Pasvanis, M., Hegarty, S., Russell, H., Peate, M., & Marino, J. L. (2023) · Supportive Care in Cancer · doi:10.1007/s00520-023-07903-3 · Cited by 6
“Fear of cancer recurrence has been consistently associated with poorer quality of life, depression, anxiety and impaired daily functioning [30, 31].”
BackgroundPsychological Issues and Care of Cancer Survivors
Zomerdijk, N., & Turner, J. (2021) · Springer eBooks · doi:10.1007/978-3-030-78648-9_17 · Cited by 5
Bitan, S., Daches, S., & Hasson‐Ohayon, I. (2025) · Health Psychology and Behavioral Medicine · doi:10.1080/21642850.2025.2525184 · Cited by 5
“…and exhausting physical experience that patients in the acute phase of cancer undergo and excessive alertness to their bodily symptoms (Kang et al., 2017), and this kind of hyper-vigilance continues to be prominent in cancer survivors’ day-to-day experience as well (Mutsaers et al., 2016).”
Miller, D. G., Lapen, K., Dee, E. C., Meske, S. W., Weiss, M. C., Chino, J., & Chino, F. L. (2025) · JAMA Network Open · doi:10.1001/jamanetworkopen.2025.49809 · Cited by 5
Fear of the Cancer Coming Back: A Metasynthesis of Fear of Recurrence in Breast Cancer
Wang, K., Li, H., & Qin, N. (2024) · Public Health Nursing · doi:10.1111/phn.13467 · Cited by 6
Zheng, M., Wang, S., Zhu, Y., & Wan, H. (2023) · Supportive Care in Cancer · doi:10.1007/s00520-023-08028-3 · Cited by 7
“However, the latest evidence shows that approximately 50.5% of studies related to FOP were conducted on breast cancer patients [9].”
InfluentialEconomou, D. R., Walshe, C., & Brearley, S. G. (2021) · Supportive Care in Cancer · doi:10.1007/s00520-020-05956-2 · Cited by 5
Zheng, M., Wang, S., Zhu, Y., & Wan, H. (2023) · Supportive Care in Cancer · doi:10.1007/s00520-023-08085-8 · Cited by 5
“A qualitative study in the US found that death-related images and thoughts recur daily and are difficult to control, with fear of death-related thoughts increasing over time as the disease progresses [37].”
Bu, X., Jiang, L., & Leung, D. Y. P. (2025) · Journal of Clinical Nursing · doi:10.1111/jocn.17790 · Cited by 5
“FCR is usually triggered by treatment-related factors, including follow-up appointments and treatment side effects; psychological factors; and media reminders (Mutsaers et al. 2016; Niu et al. 2019; Wang et al. 2025).”
Ng, D. W. L., Fielding, R., Tsang, C., Carmen, N. G., Chan, J., Or, A., Kong, I. W. M., Tang, J. W. C., Li, W. W. Y., Chang, A. T. Y., et al. (2023) · BMJ Open · doi:10.1136/bmjopen-2022-065075 · Cited by 5
“…style, 41 assessed using the 28-item Chinese Brief Coping Orientation to Problems Experienced (Brief-COPE) 42 43 ; (2) intolerance of uncertainty, 44 assessed using 12-item Intolerance of Uncertainty Scale 45 ; (3) experiential avoidance, an attempt to deliberately avoid and/or escape from the…”
Butler, T., Smith, A. B., Pilatti, K., Brown, B., Anderson, K. M., Morris, B., & Garvey, G. (2023) · Current Oncology · doi:10.3390/curroncol30030222 · Cited by 5
“FCR was experienced as distressing by Aboriginal and Torres Strait Islander breast cancer survivors, with the possibility of death or having to undergo further treatment particularly concerning, as in non-Indigenous populations [25,30].”
BackgroundMichel, A., Dorval, M., Chiquette, J., & Savard, J. (2024) · Hereditary Cancer in Clinical Practice · doi:10.1186/s13053-024-00285-5 · Cited by 3
“However, it has been suggested that intolerance of uncertainty is an important risk factor of FCR in the majority of studies [22, 24, 25, 59].”
BackgroundFang, J., Yuan, C., & Suksatit, B. (2025) · Supportive Care in Cancer · doi:10.1007/s00520-025-09643-y · Cited by 4
“In particular, it is evident that the literature on the lived experiences and coping mechanisms of patients confronting cancer recurrence remains insufficiently explored [21].”
Chandeying, N., & Thongseiratch, T. (2025) · Frontiers in Psychology · doi:10.3389/fpsyg.2025.1640178 · Cited by 3
Li, Z., LIU, Y., Li, Y., Shang, Y., Zhang, J., Ji, M. X., Zhao, Z., Duan, X., Geng, W., & Yin, J. (2025) · The Breast Journal · doi:10.1155/tbj/5788053 · Cited by 3
Nwakasi, C. C., Salafia, C., Nweke, C., Bellizzi, K. M., & Park, C. L. (2025) · Journal of Cancer Survivorship · doi:10.1007/s11764-025-01901-6 · Cited by 3
“FCR has been characterized as high levels of preoccupation and worry, and persistent hypersensitivity to bodily symptoms [15], and is considered normal and expected at low levels after cancer diagnosis and treatment [9, 16].”
Fear of recurrence among gynaecological cancer survivors: A qualitative study
Dewi, S. K., Afiyanti, Y., & Rachmawati, I. N. (2021) · Enfermería Clínica · doi:10.1016/j.enfcli.2020.12.039 · Cited by 3
Day, A. T., Sood, A., Emmet, T. R., Eary, R. L., Prestwood, C. A., Salley, J. R., Huffman, A., Doenges, J., Arnold, E. M., Tiro, J. A., et al. (2023) · Annals of Otology Rhinology & Laryngology · doi:10.1177/00034894231162686 · Cited by 3
Zhu, X., Ren, G., Wang, J., Yan, Y., & Du, X. (2024) · Medicine · doi:10.1097/md.0000000000035110 · Cited by 3
Almeida, S. N., Elliott, R., Silva, E. R., & Sales, C. M. D. (2024) · Counselling and Psychotherapy Research · doi:10.1002/capr.12624 · Cited by 2
Yin, X., Cheng, Y., Yao, S., Wu, J., Liu, S., Li, W., Yu, S., Tang, L., Jing, Y., Pang, L., et al. (2022) · PubMed Central · Cited by 2
Ramírez-Orozco, M., Rojas-Russell, M. E., Vazquez, O., Robles, R., Costas-Muñíz, R., Bargalló‐Rocha, E., & Meneses-García, A. A. (2023) · Ciencias Psicológicas · doi:10.22235/cp.v17i1.2777 · Cited by 3
“Finally, the use of a structured clinical interview to determine the clinical levels of fear of recurrence more accurately as proposed by Mutsaers et al. (2016) and Simard and Savard (2015).”
BackgroundMethodNuseibeh, B. Z., Hoy, M. S., Panoch, J., Gowan, T. M., Buckles, D. M., Schwarz, M. E., & Johns, S. A. (2024) · Supportive Care in Cancer · doi:10.1007/s00520-024-08976-4 · Cited by 7
Breaking Down Silos in Treating Cardiovascular and Cancer-Related PTSD
Kronish, I. M., Edmondson, D. E., & Arch, J. J. (2025) · Policy Insights from the Behavioral and Brain Sciences · doi:10.1177/23727322241307854 · Cited by 2
“Cancer-related PTSD symptoms also strongly correlate with fear of cancer recurrence and progression, (Mehnert et al., 2009; Mutsaers et al., 2016; Simard et al., 2013) suggesting overlapping etiology.”
Liu, Y., Liu, M., Liu, L., Zhang, S., Li, T., & Ma, F. (2022) · Research Square · doi:10.21203/rs.3.rs-1565268/v1 · Cited by 2
Psychometric Properties of Fears of Cancer Recurrence Scales in Turkish Hematologic Cancer Patients
Güven, S., Topkaya, N., Şahin, E., Yaman, S., Demirci, U., & Köseoğlu, F. D. (2025) · Medicina · doi:10.3390/medicina61091628 · Cited by 2
Hundal, J., Chen, J., Russell, K. B., Carfang, L., Bedeau, A. J., Giguère, L., Ouattara, M. M., Sehabi, G., Lebel, S., Shen, S., et al. (2026) · American Society of Clinical Oncology Educational Book · doi:10.1200/edbk-26-517396 · Cited by 1
Self-citationLin, Q.-M., Zhang, B., Qiu, X.-M., Chen, A.-Y., Zhang, Q.-Y., & Lin, B.-H. (2026) · Patient Preference and Adherence · doi:10.2147/ppa.s610299 · Cited by 1
Li, Z., Li, Y., Liu, Y., Zhang, J., Ji, X., Zhao, Z., Duan, X., Geng, W., & Yin, J. (2022) · Research Square · doi:10.21203/rs.3.rs-1153816/v1 · Cited by 1
Tomei, C. (2017) · uO Research (University of Ottawa) · doi:10.20381/ruor-20486
Self-citationÉvaluer et gérer la peur des patients d’une récidive du cancer
Mutsaers, B., Rutkowski, N. A., Jones, G., Lamarche, J., & Lebel, S. (2020) · PubMed Central
Self-citationBrown, E., Hoskin, J., & Gullifer, J. (2022) · Research Square · doi:10.21203/rs.3.rs-1749708/v1
Metadata
- Authors
- Mutsaers, B., Jones, G., Rutkowski, N., Tomei, C., Séguin Leclair, C., Petricone-Westwood, D., Simard, S., & Lebel, S.
- Affiliations
- University of Ottawa (CA)
- Institut universitaire de cardiologie et de pneumologie de Québec (CA)
- Corresponding author
- Mutsaers, Brittany
- Venue
- Supportive Care in Cancer
- Published
- 2016-05-12
- Volume
- 24
- Issue
- 10
- Pages
- 4207-4218
- ISSN
- 0941-4355 (ISSN-L)
- 1433-7339
- OpenAlex
- W2388194414
- Cited by
- 109
- References
- 36
- Citations by year
- 2026: 5 · 2025: 14 · 2024: 15 · 2023: 15 · 2022: 20 · 2021: 11 · 2020: 6 · 2019: 8 · 2018: 7 · 2017: 8
- FWCI
- 4.14
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Supportive Care in Cancer (publishedVersion)
- PubMed (publishedVersion)
- Constellation (Université du Québec à Chicoutimi) (acceptedVersion)
- Funders
- University of Ottawa
- Topics
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Social Sciences › Psychology › Experimental and Cognitive Psychology › Anxiety, Depression, Psychometrics, Treatment, Cognitive Processes
- Keywords
- fear of cancer recurrence, cancer survivors, death-related thoughts, intolerance of uncertainty, intrusive thoughts, cancer-related worry, psychological distress, coping strategies
- MeSH terms
- Adaptation, Psychological, Aged, Aged, 80 and over, Anxiety, Fear, Female, Humans, Male, Middle Aged, Neoplasm Recurrence, Local, Neoplasms, Survivors
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