Psychological Responses to Cancer Recurrence: A Controlled Prospective Study

Each year, over 1.2 million individuals are diagnosed with cancer recurrence and more than one-half will progress rapidly and die of their disease.1 Despite the prevalence of cancer recurrence, psychosocial research on patients who recur is very limited. Moreover, the prospects for expansion in the coming years may be dim, as new funding initiatives focus on cancer survivors rather than on those recurring and dying of the disease. As biobehavioral research has advanced our knowledge of patients’ responses to the initial cancer diagnosis, understanding the psychological and behavioral aspects of cancer recurrence is similarly important. The literature provides a clinical picture. Psychological responses to cancer recurrence appear to include depressive symptoms, such as the loss of hope for recovery,2 anxieties and fears of death, and difficulties with disability.3–5 Morbidities can include pain,6 appetitive difficulties (e.g., anorexia, cachexia), 7 poor body image,8 and others. It has been suggested that psychological factors, such as social support,5,9,10 emotional control,11 or spirituality12 may be moderators of patient distress. There are few empirical reports, however, to document the accuracy of this clinical picture. Typical for emerging research areas, methodologies of the studies have been limited and the results descriptive, without a priori conceptual or theoretic predictions (see Northouse et al.13 for an exception). Reports have small sample sizes, assessments occurring months or even years after the cancer recurrence diagnosis, and heterogeneous samples, with diagnoses of Stage IV included with recurrent cases, for example. More problematic is the absence of research designs, per se, as many are reports of one group completing one assessment. Some are studies of patients at the time of the diagnosis,3,11,14 –19 whereas others assessed patients at variable times since diagnosis.9,10,20 We consider two conceptual frameworks for understanding patients’ responses to cancer recurrence. The classic notion of existential plight,21 a term characterizing the emotional trauma of the initial diagnosis of cancer, may have some similarities to patients’ responses to a diagnosis of cancer recurrence. Individuals may again have fears of what is to come: treatments, life disruption, just feeling “sick,” and the expectation that one’s trajectory is decline and death. Would friends and families provide support once again? Hopes for the future may evaporate and a premature death is no longer a remote possibility. An alternative conceptualization considers principles of learning.22,23 Habituation, for example, would predict that responses to cancer recurrence may be difficult, but less so than those experienced at the initial diagnosis, and certainly not worse. Many experiences and circumstances would be familiar ones (e.g., disruption of daily routines, immersion in the medical system, knowledge of cancer treatments and the symptoms they produce) and consequently, less distressing. Other circumstances—such as having established relations with oncologists and nurses—might lessen stress and anxiety and even offer the opportunity for early social support. Having experienced this once, the patient would be more knowledgeable of the type and availability of his/her existing resources (e.g., insurance coverage, finances), and problem solving could be focused and, possibly, more successful. Experiencing a cancer recurrence diagnosis would not be a repeat of a traumatic event that elicits “conditioned” emotional sequelae. Instead, emotional responses would be different, and dampened by fewer, less severe stressors and the addition of other neutral (i.e., familiar) to positive (supportive) experiences. The literature provides three relevant studies. None offered a conceptual model, but each evaluated psychological responses among recurrent patients by contrasting groups— comparing patients with an initial diagnosis with those with cancer recurrence. Munkres et al.4 reported no group differences in emotional distress, per se, yet the patients with recurrent disease reported greater distress with symptoms and burden from their own self-care. Both Given and Given24 and Kissane et al.’s25 comparison employing diagnostic psychiatric interviews reported no group differences. Similarly, there is no consistency of findings in retrospective studies, in which recurrent patients are assessed and then asked to recall their level of distress at their initial diagnosis. Some patients recall cancer recurrence as less distressing than their initial diagnosis,13 but others believe the experiences were similar.5,6 Cella et al.14 and Mahon and Casperson26 reported cancer recurrence as more difficult, with concerns of death common and overwhelming. In summary, the nature and magnitude of psychological responses to cancer recurrence are unknown. Examining this issue is difficult. Obviously, patients cannot be randomized to “recurrent” and “non-recurrent” groups. A longitudinal design—following patients from the time of their initial diagnosis until cancer recurrence—is the best alternative. Further, diagnostically similar patients remaining disease free and followed for an equivalent interval would provide an important comparison, as even survivors of cancer remaining disease free report adjustment difficulties such as poorer health status and continuing fatigue.27–29 The quality of life (QOL) trajectory of patients with cancer who became survivors would provide a relevant comparison with a recurrent group. We are conducting a randomized trial to test the efficacy of a psychological intervention for patients with breast cancer on biobehavioral outcomes and disease end points.30,31 Accrued after surgery and before beginning adjuvant therapy, the sample is large and homogeneous, and a range of measures assesses cancer-specific stress, emotional distress, social adjustment, functional status, and health status. After 8 years of follow-up, some women have recurred while the majority have no evidence of disease. A comparison of these two groups of women at the time of their initial diagnoses and the time at which one group recurred provides an unprecedented circumstance for a controlled, prospective analysis of patients’ responses to cancer recurrence.