Living in Fear: Exploring Fear of Cancer Recurrence and Its Impact on Quality of Life

June 2020 Vol 11, No 6


Multiple Myeloma
Annamaria Lattanzio Hale, MSN, RN, OCN
Penn Medicine Lancaster General Health
Ann B. Barshinger Cancer Institute
Lancaster, PA

The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown. —H.P. Lovecraft

Multiple myeloma, a cancer of the plasma cells in the bone marrow, while treatable, is currently incurable. The landscape of the disease has changed significantly over the past 2 decades with the advent of novel cancer therapies, such as immunomodulating drugs, proteasome inhibitors, monoclonal antibodies, and histone deacetylase inhibitors.1 Such new treatments have shifted its paradigm into the realm of chronic disease.2 Despite these improvements, the prognosis of multiple myeloma in each patient remains heterogeneous and is largely based on the genetic features of the cancer.3 The median age at diagnosis of multiple myeloma is 69 years, and the disease trajectory is characterized by relatively intense therapy alternating with more stable intervals without treatment.2

Navigating life with multiple myeloma as a chronic illness has unveiled unique psychosocial challenges for patients. Research indicates that emotional symptoms, such as sadness and anxiety, are prevalent concerns among patients with multiple myeloma.4 Cuffe and colleagues suggest that uncertainty becomes a new normal for patients with multiple myeloma because the fear of relapse lingers constantly.5 Not surprisingly, an estimated 50% of cancer survivors suffer moderate to high levels of the phenomenon, fear of cancer recurrence (FCR).6 Lebel and associates defined FCR as “the fear or worry that the cancer will return or progress in the same organ or in another part of the body.”7 Although relevant to patients living with multiple myeloma, FCR has not been widely studied in this particular population of cancer survivors.

Of all the liars in the world, sometimes the worst are our own fears. —Rudyard Kipling

Overview of Fear of Cancer Recurrence

The National Comprehensive Cancer Network (NCCN) guidelines for survivorship discuss that survivors of cancer and its associated treatments are especially vulnerable to mental health issues like FCR, which may remain for years beyond diagnosis.8 FCR is considered part of the universal plight of cancer survivors and is not necessarily linked to a specific type of cancer. However, the objective risk of cancer recurrence does vary between cancer types. Although only sparse evidence links stage of disease, type of treatment, and physical comorbid conditions to FCR, younger age, female gender, and lower education have been regularly associated with increased FCR. Research indicates that FCR has roots in stage-of-life challenges related to caregiving, childbearing, child­rearing, and financial responsibilities.9 FCR often includes persistent rumination, undue monitoring for cancer recurrence, and intentional avoidance of cancer-related associations.6 FCR may be triggered by external reminders of cancer, like appointments, health campaigns, or a friend or family member being diagnosed with cancer, and by internal reminders, like a physical symptom (fatigue or pain).10 Deimling and colleagues11 discussed that the number of physical comorbidities is predictive of worry related to cancer. They hypothesized that as new health issues arise, survivors may be concerned that these conditions and associated symptoms are linked to previous cancer.

FCR is a complex phenomenon that overlaps with both anxiety and generalized anxiety disorder while also exhibiting similarities to the DSM-5 diagnosis of somatic symptom disorder.12 Despite FCR being a clearly established consideration in the care of patients with cancer, the division between normal levels of FCR and clinically significant levels remains undefined. Although more than 30 FCR measurement tools exist, they are not part of routine use in institutions providing oncology care.7 The Delphi Study asserted that FCR becomes clinically relevant when patients are distressed by their preoccupation with thoughts of recurrence, adopt negative coping strategies, have compromised daily functioning, or impaired ability to plan for the future.13

A man who fears suffering is already suffering from what he fears. —Michel de Montaigne

Implications of FCR

Although FCR is a predictable response following a cancer diagnosis and treatment, some cancer survivors experience elevated levels of fear that can portend negative consequences. More intense FCR can be a challenge to manage and can be linked to depression and anxiety. In such cases, FCR may not decrease over time and often negatively impacts quality of life.12 In an attempt to quell FCR, patients may adopt maladaptive behaviors to resume control. Excessive reassurance seeking, substance abuse, sedentary lifestyles, and social isolation are examples of possible maladaptation.10 Additionally, FCR can have deleterious effects on a patient’s likelihood to engage in screening and positive follow-up behaviors.14 How patients experience and cope with FCR influences levels of emotional distress and important health behaviors.15 When FCR is poorly managed, it can breed psychological distress and interfere with activation, the ability to manage one’s health effectively.16 Patients with more severe FCR consume more healthcare resources and in turn raise healthcare costs.7

The fact that recurrence of cancer is in some cases not only possible but probable is a key challenge in ameliorating FCR. This is particularly relevant in cancers such as multiple myeloma, in which remission will almost certainly be met with relapse at some point. Catamero and colleagues17 suggest that patients with multiple myeloma express reluctance to share their fears with the oncology team, especially if providers seem preoccupied. Members of the oncology team are well versed in monitoring physical symptom burden and intervening when necessary. FCR, particularly if it manifests after a patient finishes treatment, may not be on the team’s radar the way symptoms like pain or nausea would be. Nurse navigators, who have developed a relationship with patients across the disease trajectory, are well positioned to be alert to and assess for behaviors associated with FCR. Potentially subtle findings like repeated phone calls about symptoms or escalation of anxiety prior to surveillance imaging can provide clues that a patient is struggling with FCR.

But fear doesn’t need doors and windows. It works from the inside. —Andrew Clements

Review of the Literature

Oberoi and colleagues18 outlined their longitudinal, population-based study, which included survivors of diffuse large B-cell lymphoma and multiple myeloma. Their research suggested that despite having 2 different hematologic malignancies, survivors described fairly similar needs related to information about recurrence of cancer, survival and treatment options, and emotional and psychologic needs, specifically FCR. This study also revealed higher depression levels in the patients with multiple myeloma the further they were into survivorship. The authors supported additional research exploring psychosocial and supportive care needs in each subtype of hematologic cancer.

Hall and colleagues15 highlighted their study at an academic hospital of 258 cancer survivors who were surveyed about their psychosocial needs. The survey, which was based on NCCN survivorship guidelines, inquired about physical symptoms, FCR, emotional distress, and health-related behaviors. Results intimated that increased FCR was associated with worse physical symptoms, more intense emotional distress, more frequent use of sunscreen, increased use of alcohol, and decreased physical activity. The study concluded that unmanaged FCR has significant implications for emotional well-being and health behavior.

Jones and associates19 discussed their cohort of 615 patients with breast, colorectal, lung, and prostate cancer, and melanoma who were 5 to 10 years postdiagnosis and who completed a mail survey. Of the sample, almost 20% of patients described worrying about their cancer often or all of the time. The study suggested that worry increased the likelihood of negative effects on patients’ physical and mental function.

Sarkar and colleagues20 explored the relationship between anxiety, FCR, supportive care needs, and healthcare utilization in a mixed sample that included 335 patients with cancer. The Fear of Progression Questionnaire-Short Form, the General Anxiety Disorder Scale, and the Supportive Care Needs Survey were utilized. The research indicated that increased FCR forecasted greater unmet supportive care needs, but it did not specifically lead to increased utilization of healthcare services.

Mutsaers and colleagues12 used a semistructured interview of a convenience sample of 40 participants to research the features of clinical FCR. Previous research documenting intrusive thoughts, distress, and impact on functioning as hallmarks of FCR was confirmed with this study. Additional characteristics, such as death-related thoughts, loneliness, and belief that cancer will return, also emerged. The participants’ illustration of fear and worry specific to cancer proposed that FCR is a defined phenomenon connected to cancer survivorship and not simply a manifestation of other psychological disorders.

The Delphi study outlined several key characteristics of clinically significant FCR, including (1) a preoccupation with thoughts of cancer recurrence or progression; (2) the adoption of unhelpful coping strategies; (3) daily functioning that is impaired; (4) clinically significant distress; and (5) an impaired ability to plan for the future. Sharpe and associates explored the relationship between death anxiety and FCR and discussed the commonly accepted notion that cancer is potentially life-threatening, which can result in an existential crisis after diagnosis as patients face their own mortality and potential fear of death and dying.21

Fear is a natural reaction to moving closer to the truth. —Pema Chordron

Theoretical Underpinnings

Several theories provide a framework for FCR in patients with cancer.

  • Erickson’s formulation of developmental conflicts organizes existential themes in layers that can be activated in various ways by serious illness and speaks to the varied experiences different patients have when traversing a life-threatening illness13
  • Mishel’s uncertainty in illness theory can be applied to FCR as uncertainty can be created when complexity, unpredictability, and insufficient information are associated with an illness and treatment. The incorporation of uncertainty into one’s life is thought to be vital to adaptation22
  • The common sense model contends that when patients are faced with a health threat, a process is activated that involves parallel cognitive and emotional systems that influence one’s response. Cognitive response activation facilitates coping, but if the health threat triggers heightened emotional arousal and distress dominates the cognitive system, coping strategies become focused on easing distress (checking, reassurance seeking)22
  • The terror management theory (TMT) contends that the impermanence of human existence motivates much behavior and evokes defense mechanisms to protect against such fears. TMT has frequently been applied to the concept of death anxiety and posits that the underlying tenet of death anxiety is that one will no longer exist and will leave no legacy behind. Additional research about the connection between death anxiety and FCR is needed. Sharpe and colleagues21 stress the importance of understanding the exact fear that is embedded in FCR both individually and collectively. For some patients, death itself may be the driving fear, whereas others may dread re-experiencing traumatic treatment or the dying process.

He who has overcome his fears will truly be free. —Aristotle

Exploring Evidence-Based Interventions

Although FCR is prevalent among patients with cancer, research has indicated that oncology specialists are uninformed about the optimal treatment and refer only 21% of patients with severe FCR for psychosocial services.7 Growing research supports evidence-based interventions for FCR, but further research is needed.6

Catamero and colleagues17 recommend a mental health assessment at key junctures, such as when a patient requires a change in treatment or has a relapse of their cancer. Regular assessment of mood and anxiety allows timely referral to supportive resources or psychological care. Research has identified that patients value attention to their holistic needs as much as physical assessment.5 The International Myeloma Foundation Leadership Board supports screening all patients with multiple myeloma for distress at regular intervals, recognizing that distress impacts multiple aspects of quality of life.17

Exposure techniques can be effective in treating posttraumatic stress disorder and should be included in interventions for FCR. Techniques that focus on cognitive reframing and thought monitoring can be helpful for patients who view cancer recurrence as inevitable by reframing thoughts to consider that cancer recurrence is merely one possible outcome. Additionally, activities that involve planning for the future and seeking meaning in one’s life have been employed in a cognitive-existential intervention for FCR. This intervention has also been purported to target death-related anxiety.12 Sharpe and associates21 described that social relationships and legacy planning protect against death anxiety that can be associated with FCR. These interventions provide a platform to process worries and emotions.

Cognitive behavioral therapies, meditation, relaxation techniques, and the creative arts are viable FCR interventions. Fostering tolerance of uncertainty and finding meaning amidst ambiguity are other possible areas of focus. The application of mind-body techniques with the intent to control FCR has demonstrated efficacy as well.10 Despite use of the most promising approaches, a sizable percentage of patients have persistent clinically significant FCR, underscoring the importance of employing interventions that target various elements of FCR, including death anxiety.23

Research has illustrated that patients with blood cancers, such as multiple myeloma, have been less likely to access palliative care services than patients with other types of cancer.24 Oberoi and colleagues25 outlined that patients with hematologic cancers are more likely to have compromised quality of life. The role of palliative care in supporting quality of life for patients with serious illnesses utilizes a multidisciplinary approach. Porta-Sales and colleagues4 established that an early palliative care intervention is feasible for patients with multiple myeloma and confers benefits by way of improvement of physical and emotional symptoms.

Ultimately, we know deeply that the other side of every fear is a freedom. —Marilyn Ferguson


In no arena is fear more relevant than in the realm of cancer survivorship. Identifying and addressing FCR provides the opportunity to improve the physical and emotional health and quality of life of patients with cancer. Additional research is needed about how constructs like death anxiety contribute to FCR and ways to harness integrative modalities that employ holistic approaches to address FCR. Clarity about the criteria for clinically significant FCR, and when and with what tools screening should occur, remain key pieces of the puzzle. Understanding characteristics of high-risk patients will be helpful in early identification. Finally, consideration of FCR in the context of diseases like multiple myeloma that are chronic in nature and often require ongoing treatment is important in tailoring assessment and intervention to each patient population.


  1. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines). Multiple Myeloma. Version 3.2020.
  2. Ramsenthaler C, Gao W, Siegert RJ, et al. Symptoms and anxiety predict declining health-related quality of life in multiple myeloma: a prospective, multi-centre longitudinal study. Palliat Med. 2019;33:541-551.
  3. Zhang Y, Chen X, Chen W, Zhou H. Prognostic nomogram for the overall survival of patients with newly diagnosed multiple myeloma. BioMedical Research International.
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  5. Cuffe CH, Quirke MB, McCabe C. Patients’ experiences of living with multiple myeloma. Br J Nurs. 2020;29:103-110.
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  8. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines). Survivorship: Anxiety, Depression, Trauma, and Depression. Version 1.2020.
  9. Van de Wal M, van de Poll-Franse L, Prins J, Gielissen M. Does fear of cancer recurrence differ between cancer types? A study from the population-based PROFILES registry. Psychooncology. 2016;25:772-778.
  10. Hall DL, Luberto CM, Philpotts LL, et al. Mind-body interventions for fear of cancer recurrence: a systematic review and meta-analysis. Psychooncology. 2018;27:2546-2558.
  11. Deimling GT, Brown SP, Albitz C, et al. The relative importance of cancer-related and general health worries and distress among older adult, long-term cancer survivors. Psychooncology. 2017;26:182-190.
  12. Mutsaers B, Jones G, Rutkowski N, et al. When fear of cancer recurrence becomes a clinical issue: a qualitative analysis of features associated with clinical fear of cancer recurrence. Support Cancer Care. 2016;24:4207-4218.
  13. Vehling S, Kissane DW. Existential distress in cancer: alleviating suffering from fundamental loss and change. Psychooncology. 2018;27:2525-2530.
  14. Butow P, Turner J, Gilchrist J, et al. Randomized trial of ConquerFear: a novel, theoretically based psychosocial intervention for fear of cancer recurrence. J Clin Oncol. 2017;35:4066-4077.
  15. Hall DL, Jimenez RB, Perez GK, et al. Fear of cancer recurrence: a model examination of physical symptoms, emotional distress, and health behavior change. J Oncol Pract. 2019;15:e787-e797.
  16. Mazanec SR, Miano S, Baer L, et al. A family-centered intervention for the transition to living with multiple myeloma as a chronic illness: a pilot study. Appl Nurs Res. 2017;35:86-89.
  17. Catamero D, Noonan K, Richards T, et al. Distress, fatigue, and sexuality: understanding and treating concerns and symptoms in patients with multiple myeloma. Clin J Oncol Nurs. 2017;21(5 Suppl):7-18.
  18. Oberoi D, White V, Seymour J, et al. The course of anxiety, depression and unmnet needs in survivors of diffuse large B cell lymphoma and multiple myeloma in the early survivorship period. J Cancer Surviv. 2017;11:329-338.
  19. Jones SM, Ziebell R, Walker R, et al. Association of worry about cancer to benefit finding and functioning in long-term cancer survivors. Support Care Cancer. 2017;25:1417-1422.
  20. Sarkar S, Sautier L, Schilling G, et al. Anxiety and fear of cancer recurrence and its association with supportive care needs and health-care service utilization in cancer patients. J Cancer Surviv. 2015;9:567-575.
  21. Sharpe L, Curran L, Butow P, Thewes B. Fear of cancer recurrence and death anxiety. Psychooncology. 2018;27:2559-2565.
  22. Fardell JE, Thewes B, Turner J, et al. Fear of cancer recurrence: a theoretical review and novel cognitive processing formulation. J Cancer Surviv. 2016;10:663-673.
  23. Curran L, Sharpe L, MacCann C, Butow P. Testing a model of fear of cancer recurrence or progression: the central role of intrusions, death anxiety and threat appraisal. J Behav Med. 2020;43:225-236.
  24. Kiely F, Cran A, Finnerty D, O’Brien T. Self-reported quality of life and symptom burden in ambulatory patients with multiple myeloma on disease-modifying treatment. Am J Hosp Palliat Care. 2017;34:671-676.
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