Conquering the Enigmatic Fear of Recurrence in the Breast Cancer Care Continuum

Together with a clinical preponderance as the most common cancer subtype for women worldwide, a breast cancer journey also predisposes to long-term survivorship care needs in view of the advances in early detection and treatment. By the same token, many women surviving breast cancer are known to face multiple physical, psychological, social and financial impacts, from the time of initial diagnosis to well after the treatment [1,2].

The term ‘cancer’ is commonly associated with death, pain and suffering. Due to its strong links with mortality, a fear of cancer recurring often lurks in the minds of survivors. High fear of cancer recurrence [FCR] is a commonly reported problem among patients even after their treatment. FCR has been defined as the “fear, worry, or concern relating to the possibility that cancer will come back or progress” [3]. It has also been likened to a “sword of Damocles” that dangles over cancer survivors for the rest of their lives [4]. Thus, the fears are likely to be very powerful as they delve into the essence of our own understanding of morbidity and mortality

Admittedly, the FCR is a residual psycho-emotional problem, widely observed in the women survivors of breast cancer [5]. While the fear is common or normal and some degree of FCR may even be beneficial to increase the survivor’s commitment to making healthy lifestyle choices and regular follow-up monitoring, a severe level of FCR may cause considerable anxiety or personal suffering. Such a distress may be counterproductive to the cancer survivors ‘recovery attempts. Understanding the extent of FCR as an enduring vulnerability in the survivorship journey and helping them to manage these recurrent emotions appears to be an essential prerequisite within the realms of a comprehensive rehabilitation package.

Perhaps made known by several meta-analyses and systematic reviews, our understanding on the incidence or prevalence of this fear complex is currently better defined; a clinical estimate of the FCR factor widely ranges from 50% -90% for all-cancer causality [6,7]. As a pattern of insistent worry that the condition will recur or progress in spite of treatment and often leading to negative impacts on daily life, FCR is being recognised as one of the major unmet care needs in the survivorship trajectory [8]. Specifically, in the breast cancer continuum, this fear could be highly conserved with incident rates of well over 50%, thereby necessitating preventive interventions in order to retrieve adequate psycho-emotional quality of life, while journeying through the survivorship phase [5].

Although the clinical manifestations of FCR are variable, some delineators for the relative magnitude of the suffering and associated distress may stem from age, time since diagnosis or treatment, type of intervention, consequent physical or functional limitations, any associated anxiety, depression etc [9,10]. In our quantitative analyses, the emerging determinants also included an early stage diagnosis, lower socio-economic level or a singlehood status alongside a cross-sectional FCR prevalence of 67%. Furthermore, a memory recall of the diagnosis or treatment preceding the normative fear was triggered in a majority by any media reports or generic conversations relating to cancer. To prevent or overcome, the respondents conscientiously tried to avoid such situations that may bring back those distressing moments. Nonetheless, the brunt of these recurrent thoughts seemingly extended far beyond the psycho-emotional persona to involve the normal functional capabilities in their daily routine.

The challenges faced by healthcare professionals in addressing the FCR in toto therefore also include the significant impacts of this vulnerability on the emotional, functional, social aspects or the relationship quality. While validated, standard tools are available in this clinical evaluation [11,12], a simplified estimate of this spectrum is feasible via patient-centric face-to-face interviews or self-administered reports.

Some paradigms to query on the incident development and maintenance of FCR include:

1. What situations bring on thoughts of a possibility of cancer recurrence?

2. How severe are these thoughts in their own perception?

3. How often do they have such thoughts or fears?

4. What are their typical emotions while going through such fears?

5. How do these fears or nagging worries affect their daily lives?

6. How do they cope with these distressing concerns?

7. What insights, reassurances or coping strategies would be useful?

For many breast cancer survivors, the fear may constitute a cognitive affect with the following likely dimensions:

1. Frequent, ruminant thoughts about cancer

2. Difficulty in controlling or managing these intrusions

3. Hyper-vigilance to perceived threats

4. Impulsive need for self-examination

5. Frequent monitoring for new signs or symptoms

6. Inevitable belief that cancer will return or progress

7. Personal distress in going through this experience

8. Attempts of different coping strategies

9. Reaching out to healthcare professionals for reassurance

10. Seeking information from media or online resources

11. Fearfully avoiding triggers of any sort

12. Avoiding follow-up visits and screening

As indicated earlier, the psychodynamics of such intrusive thoughts often leave detectable changes in the quality of the survivors’ own personal, family or socio-environmental existences. In order to elucidate what works in this context, studies have identified purposive coping strategies including deliberate distractions, forced positive thoughts, support from family or friends, strengths from spirituality or religion and lifestyle modifications, with variable outcomes [13,14].Clinical guidelines may be broadly categorised under psychological approaches (e.g. cognitive behavioural therapy), pharmacological interventions (e.g. anxiolytics or antidepressants) and complementary or alternative therapies (e.g. meditation practice)[4]. The influence of quality care continuum and its potential to mitigate this fear factor have been documented through prospective studies [2]. Essentially, the FCR will form part of a self-management care need in the breast cancer journey, integrating the needs of psychological conceptbased intervention models within the clinical consortium [15,16]. Thus, it would be worthwhile to evaluate the various therapeutic programmes that sequentially reduce the associated personal distress through randomized, controlled trials to provide the necessary ‘level one clinical evidence’ or‘grade of recommendation’. In addition, within the construct of a holistic care model, the following domains are also pertinent:

Transitional care support

Providing necessary understanding on the prognosis; likely signs or symptoms of recurrence or progression; timely clarification of concerns on any related or unrelated findings.

Healthcare professional support

Emphasising the importance of talking about the fears and underlying worries; acknowledging and normalising them; refuting self-defeating irrational beliefs; enhancing coping by reinforcing the value of making cognitive, behavioural or lifestyle changes; physical stamina building.

Supportive resources

Linking breast cancer survivors to appropriate sources of social support; providing educational material on FCR as a useful reference tool; identifying credible website links with relevant information.

In addressing the FCR as a major existential barrier within the survivorship trajectory, research efforts have documented behavioural change theories or motivational models for a customized inclusion in the armamentarium of supportive rehabilitation. Together with the progress that has been made in the understanding of the multi-level impact of this obligatory concern in the cancer journey, it follows that the FCR-specific professional support entails a comprehensive rehabilitation package. Broadly, it also highlights the salience of customized intervention programmes or services to enhance individual coping mechanisms and to reinforce successful transition well beyond the recovery. Especially with the current focus on patient-centered care, these interventions, tailored to the cancer survivor’s specific needs, are crucial to ensure that these women can lead normal lives - unburdened by the FCR, in the aftermath of a breast cancer diagnosis and treatment.

None

The authors made no disclosures.

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