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, maladaptive coping strategies such as avoidance and excessive reassurance-seeking, and impaired functioning and quality of life.
“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]
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.
“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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Risk Factors for Fear of Recurrence in Head and Neck Cancer Patients
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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 · see citing works
Chen, F., Ou, M., Xiao, Z., & Xu, X. (2024) · BMC Psychiatry · doi:10.1186/s12888-024-05819-8 · Cited by 15 · see citing works
“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].”
BackgroundKan, J. M., Dieng, M., Butow, P. N., Mireskandari, S., Tesson, S., Menzies, S. W., Costa, D. S. J., Morton, R. L., Mann, G. J., Cust, A. E., et al. (2021) · Frontiers in Psychology · doi:10.3389/fpsyg.2021.661190 · Cited by 13 · see citing works
“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.”
BackgroundHefner, J., Berberich, S., Lanvers, E., Sanning, M., Steimer, A.-K., & Kunzmann, V. (2017) · Patient Preference and Adherence · doi:10.2147/ppa.s142784 · Cited by 13 · see citing works
“18,52 Our patients worried about their loved ones.”
Arch, J. J., Slivjak, E. T., & Finkelstein, L. B. (2024) · Journal of Palliative Medicine · doi:10.1089/jpm.2023.0658 · Cited by 12 · see citing works
“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
Deuning‐Smit, E., Custers, J. A. E., Kwakkenbos, L., Hermens, R., & Prins, J. B. (2022) · Psycho-Oncology · doi:10.1002/pon.6066 · Cited by 11 · see citing works
Chen, S., Wu, S. V., Wang, T.-J. T., Rosenberg, J. P., Lu, Y., & Liang, S. (2021) · International Journal of Nursing Practice · doi:10.1111/ijn.13033 · Cited by 11 · see citing works
Emotion-focused therapy for fear of cancer recurrence: A hospital-based exploratory outcome study.
Almeida, S. N., Elliott, R., Silva, E. R., & Sales, C. M. D. (2022) · Psychotherapy · doi:10.1037/pst0000389 · Cited by 12 · see citing works
Martins, A. P., Bennister, L., Fern, L. A., Gerrand, C., Onasanya, M., Storey, L., Wells, M., Whelan, J. S., Windsor, R. E., Woodford, J., et al. (2022) · Cancer Nursing · doi:10.1097/ncc.0000000000001163 · Cited by 11 · see citing works
Distress in post-treatment hematological cancer survivors: Prevalence and predictors
Raphael, D. L., Frey, R. A., & Gott, M. (2019) · Journal of Psychosocial Oncology · doi:10.1080/07347332.2019.1679320 · Cited by 10 · see citing works
“” 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 · see citing works
Zhang, H., Lin, Z., Li, T., Kong, M., Jin, L., Wu, W., & He, Z. (2023) · European Journal of Oncology Nursing · doi:10.1016/j.ejon.2023.102460 · Cited by 9 · see citing works
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Self-citationFortin, J., Rudd, É., Trudel‐Fitzgerald, C., Cordova, M. J., Marin, M., & Brunet, A. (2024) · Psychology Health & Medicine · doi:10.1080/13548506.2024.2430796 · Cited by 8 · see citing works
“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 · see citing works
“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 · see citing works
“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].”
BackgroundLyu, M., Siah, C. J. R., Zhao, J., & Cheng, K. K. F. (2023) · European Journal of Oncology Nursing · doi:10.1016/j.ejon.2023.102360 · Cited by 6 · see citing works
Sun, D., Fang, H., Wang, J., & Wu, J. (2024) · Journal of Cancer Survivorship · doi:10.1007/s11764-024-01582-7 · Cited by 7 · see citing works
“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 · see citing works
“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 · see citing works
Bitan, S., Daches, S., & Hasson‐Ohayon, I. (2025) · Health Psychology and Behavioral Medicine · doi:10.1080/21642850.2025.2525184 · Cited by 5 · see citing works
“…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 · see citing works
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 5 · see citing works
Zheng, M., Wang, S., Zhu, Y., & Wan, H. (2023) · Supportive Care in Cancer · doi:10.1007/s00520-023-08028-3 · Cited by 7 · see citing works
“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 · see citing works
Zheng, M., Wang, S., Zhu, Y., & Wan, H. (2023) · Supportive Care in Cancer · doi:10.1007/s00520-023-08085-8 · Cited by 5 · see citing works
“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 4 · see citing works
“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 · see citing works
“…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 · see citing works
“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 · see citing works
“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 · see citing works
“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 · see citing works
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 · see citing works
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 · see citing works
“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 · see citing works
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 · see citing works
Zhu, X., Ren, G., Wang, J., Yan, Y., & Du, X. (2024) · Medicine · doi:10.1097/md.0000000000035110 · Cited by 3 · see citing works
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 · see citing works
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 · see citing works
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 2 · see citing works
“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 5 · see citing works
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 · see citing works
“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 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
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
- 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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