Fear of Cancer Recurrence May Need Splitting Into Two Distinct Conditions, Researchers Argue

Fear of cancer recurrence is one of the most common and most studied psychological consequences of a cancer diagnosis, yet a team of leading psycho-oncology researchers now argues that the field may have been bundling together two experiences that are fundamentally different. In a commentary published in Supportive Care in Cancer, Jose A. E. Custers of Radboud University Medical Center and colleagues, including Sophie Lebel of the University of Ottawa and Louise Sharpe of the University of Sydney, revisit a definition their community agreed upon a decade ago and ask whether the era of precision medicine has outgrown it. Their provocative question, captured in the commentary’s title, is whether it is time to consider separating fear of cancer recurrence from fear of progression.

The starting point for the debate is the 2016 consensus paper, also published in Supportive Care in Cancer, in which Lebel, Ozakinci, Humphris, Mutsaers, Thewes, Prins, Dinkel, Butow and colleagues at the University of Ottawa Fear of Cancer Recurrence Colloquium defined fear of cancer recurrence as a normal response moving toward a clinical problem. That definition deliberately covered a spectrum, from the fleeting worry that nearly every survivor experiences after a scan or an anniversary date, to the severe, persistent and intrusive fear that can dominate a person’s life and function as a psychological disorder. By folding both recurrence, meaning the return of disease after treatment, and progression, meaning the advance of existing disease, into a single slash-linked construct, the field gained a shared language but may have blurred important clinical distinctions.

The scale of the problem explains why the construct matters so much. A systematic review and individual participant data meta-analysis published in 2022 in Psycho-Oncology, with Luigjes-Huizer, Tauber, Humphris, Kasparian, Lam, Lebel, Simard, Smith, Zachariae, Custers and many collaborators among its authorship, estimated the prevalence of fear of cancer recurrence across cancer survivors and patients and confirmed that it is widespread, affecting a substantial minority at clinically significant levels. Psychological interventions have been developed in response, and a 2019 meta-analysis in the Journal of Clinical Oncology led by Tauber and colleagues showed that these treatments do reduce fear, although effect sizes were modest, leaving considerable room for refinement. It is precisely that refinement, the new commentary argues, that may require a sharper conceptual toolkit.

The technical heart of the argument lies in psychometrics and construct validity. The Fear of Cancer Recurrence Inventory, developed and validated by Simard and Savard in 2009, established a multidimensional measure that has anchored assessment for more than fifteen years. More recently, however, Coutts-Bain, Sharpe and colleagues published a study in Psycho-Oncology in 2022 asking directly whether fear of cancer recurrence and fear of progression are equivalent constructs, and a 2023 study in the Journal of Behavioral Medicine showing that death anxiety predicts both fear of recurrence and fear of progression in ovarian cancer patients over and above other cognitive factors. These findings suggest that the two fears share common psychological machinery, particularly cognitive avoidance and worry processes described in the cognitive avoidance theory of worry cited by the commentary, while also hinting that they may diverge in clinically meaningful ways.

That divergence becomes most visible in the context of advanced disease. For patients living with metastatic cancer on ongoing systemic treatment, the binary of recurrence versus no recurrence simply does not apply. A 2022 scoping review in Cancers by Kolsteren, Deuning-Smit, Chu and colleagues examined the psychosocial aspects of living long term with advanced cancer and ongoing treatment, and a 2024 international modified Delphi study published in the Journal of Psychosocial Oncology Research and Practice, again led by Kolsteren with Kwakkenbos, Prins, Sharpe, Lebel and Custers, formally identified the features of fear of progression in this population. The experiences described there, including uncertainty about how long a treatment will keep working, vigilance toward every scan and every blood marker, and the challenge of holding hope and mortality in mind simultaneously, differ in kind from the fear of a cured patient that the disease might silently return.

Precision medicine has amplified this mismatch. Targeted therapies and immune checkpoint inhibitors have transformed some advanced cancers into chronic conditions managed over years. Research on the survivorship experience of patients with metastatic melanoma on immune checkpoint and BRAF-MEK inhibitors, published in the Journal of Cancer Survivorship in 2019 by Lai-Kwon, Khoo and colleagues, documented how these patients live in a permanent state of surveillance, dependent on drugs whose durability is uncertain. In such a world, the question is not whether the cancer will come back but whether the current therapy will continue to hold it in check. A construct defined around recurrence after curative treatment struggles to capture that existential position, which is closer to what psychotherapy researchers such as Colosimo, Nissim, Pos, Hales, Zimmermann and Rodin have described as double awareness in patients living with advanced cancer.

The commentary also situates the debate within a broader transdiagnostic movement. Sharpe, Michalowski, Richmond, Menzies and Shaw published a systematic review and meta-analysis in Health Psychology Review in 2023 demonstrating that fear of progression occurs in chronic illnesses other than cancer, treating it as a transdiagnostic construct that cuts across diagnostic categories. If fear of progression is a general phenomenon of chronic illness, while fear of recurrence is more specific to the cancer survivorship trajectory, then merging the two may obscure both their shared mechanisms and their distinct triggers. The measurement field has begun to respond: Sharpe, Menzies, Richmond, Todd, MacCann and Shaw developed and validated the Worries About Recurrence or Progression Scale, known as WARPS, in the British Journal of Health Psychology in 2024, and Smith, Sharpe, Winiarski and Shaw followed with a cancer-specific version, WARPS-C, validated in Psycho-Oncology as a screening tool for fear of cancer recurrence.

What would separation actually mean in practice? The authors suggest that distinguishing the two constructs could sharpen screening, since the questions that detect fear of recurrence in a disease-free survivor may not detect fear of progression in a patient on maintenance therapy. It could also refine treatment selection, because interventions that target catastrophic misinterpretation of bodily symptoms, a core driver of recurrence fear in survivors, may need different emphasis from interventions that help patients with advanced disease tolerate uncertainty and balance awareness of dying with engagement in living. Furthermore, separating the constructs would allow researchers to test whether death anxiety, which the ovarian cancer data identified as a powerful predictor, plays a larger role in progression fear than in recurrence fear, with direct implications for which therapeutic techniques should be deployed for which patients.

The commentary does not claim that the field should abandon a decade of accumulated evidence, and its authors, who wrote the original draft together and revised it with the full international group, are careful to frame the question as one for the community to weigh. The original 2016 definition succeeded in legitimizing fear of cancer recurrence as a clinical problem worthy of research funding, validated instruments and psychological trials. The risk now, they imply, is that a construct built for the curative-treatment era is being stretched across patient populations whose clinical realities it was never designed to describe. As precision medicine continues to convert advanced cancer into a long-term managed disease, the psychological sciences of oncology may need vocabulary that keeps pace, and the question posed by Custers, Lebel, Sharpe and their colleagues is likely to shape the next round of consensus discussions about how fear of cancer returning, spreading and progressing should be defined, measured and treated.

Subject of Research: Distinguishing fear of cancer recurrence from fear of progression in psycho-oncology

Article Title: Rethinking fear of cancer recurrence/progression in the era of precision medicine: is it time to consider separating?

Article References: Custers, J. A. E., Chu, A., Smith, B., Dinkel, A., Humphris, G., Ng, D. W. L., Prins, J. B., Poort, H., Braam, C. I. W., Kemme, N. D. F., van der Lee, M. L., Zwanenburg, L. C., Schellekens, M. P. J., Sharpe, L., & Lebel, S. (2026). Rethinking fear of cancer recurrence/progression in the era of precision medicine: is it time to consider separating?. Supportive Care in Cancer, 34(10), Article 985. https://doi.org/10.1007/s00520-026-11233-5

Image Credits: AI Generated

DOI: 10.1007/s00520-026-11233-5

Keywords: fear of cancer recurrence, fear of progression, psycho-oncology, precision medicine, cancer survivors, advanced cancer, psychometrics, death anxiety, WARPS scale, supportive care, construct validity, cancer survivorship