Psychosocial Aspects of Cancer Survivorship

Susan A. Leigh

Elizabeth J. Clark

What happens when my body breaks down happens not just to that body but also to my life, which is lived in that body. When the body breaks down, so does the life. Even when medicine can fix the body, that doesn’t always put the life back together again (1).

—Arthur Frank

Survivorship is not just about long-term survival but about quality of life from the moment of diagnosis onward. To better understand this issue from the consumer’s perspective, it is helpful to understand the difference between curing and healing. The concept of cure has become a medical reality for many types of cancer; yet, the concept of healing after cancer and its treatment is a completely different story. Although curing resides within a disease-repair system and is defined biomedically, healing focuses on health and wellness and can be explained both physically and psychosocially. Disease is what is seen, treated, and measured and is the tangible focus for cure. Illness is what is felt and experienced and is a more intangible focus for healing. Lerner notes that, “Although the capacity to heal physically is necessary to any successful cure, healing can also take place on deeper levels whether or not physical recovery occurs” (2). By understanding the difference between the treatment of an external disease and the personal, lived experience of illness, physicians can more readily acknowledge and appreciate the psychosocial sequelae, which may include spiritual or existential influences, that often accompany or follow a diagnosis of cancer. This chapter will attempt to redefine the cancer experience, especially from the consumer’s perspective, review psychosocial aspects of survival along an expanded continuum, and offer strategies to enhance survivorship.

Cancer Myths

Cancer continues to instill dread and to masquerade as a ruthless, secretive assailant. During the first half of the last century, it was believed that, “If it was not fatal, it was not cancer” (3). In Illness as Metaphor, Sontag (3) writes that a diagnosis of cancer will remain an automatic death sentence until its causes are known and effective treatments are discovered. Although recent advances in science and medical technology have increased the chances for survival, the often-paralyzing fear of eventual death from the disease still lingers today. This fear will obviously continue to invade our lives as long as certain types of cancer are untreatable or incurable.

Along with the myth of imminent death, cancer evokes other misunderstandings, especially concerning causation. Decades ago, many individuals theorized that cancer was caused by emotional resignation and hopelessness (3). Although attempts to identify “cancer personalities” became a popular trend in the 1970s, there were suggestions that patients unfortunate enough to be diagnosed with cancer must have done, thought, or repressed something to allow this disease to happen. Current pop psychology that often oversimplifies causation and blames the sick individual for having done something wrong may be rooted in this myth. Although the paranoia surrounding cancer is gradually diminishing, the disease continues to harbor elements of fear, stigma, shunning, discrimination, and withdrawal of support (4). Fortunately, the growth of advocacy organizations is helping to raise awareness about the new realities of life with and beyond cancer and is helping to dispel this paranoia.

When the biology of a disease is not understood, mythological speculation, and oversimplification are apt to define the sickness. Of major importance in defining cancer is that it continues to be identified as a homogeneous disease. Cancer is less often seen as many diseases with multiple causes and treatments and more frequently seen as a single entity with simple causation. Therefore, many individuals look for the “magic bullet” that will cure cancer, meaning all cancers! Also, a popular theory that stress causes cancer often overrules other causative factors, such as genetic predisposition, decreased or damaged immune competence, dangerous health habits, and environmental carcinogens. But not all myths are rooted in the individual. The health care system itself is also full of myths and misunderstandings.

Health Care Myths

As medical researchers and clinicians focus on extending and saving lives, patients become acutely aware of issues affecting the quality of their lives. Two current myths involved with quality of life concerns are the all-powerful role of the physician and the healing environment within our hospitals (4).

The power and control in the management of patients was historically held by doctors. In this current age of increased bureaucracy, expensive delivery of care, and cost containment, decision-making powers have shifted to financing and regulatory agencies (5). Physicians are required to spend increasing amounts of time on administrative matters, and have daily patient quotas along with time limitations spent per case. These restrictions can have a major impact on the quality of the patient/physician interaction and care. Patients also wait longer for appointments and have a more limited choice of doctors. Meanwhile, owing to the rapidly increasing
population of baby boomers, we have seen the emergence of a new type of health care consumer. Out of necessity these consumers are more assertive in asking questions and requesting information, and are more inclined toward partnership with rather than paternalism from their providers of care. As the decision-making powers shift, this attitude can either enhance or strain the already challenged physician–patient relationship.

The second area of misunderstanding is the type of environment in which healing is fostered. The delivery of care is now complicated by diagnosis-related groups, gatekeepers, cost containment, utilization reviews, managed care, and mountains of paperwork. Although the old system allowed unlimited stays in the hospital and actually encouraged passivity and invalidism, the new system has gone to the other extreme. The so-called healing environment in the hospital is now hurried, understaffed, and overflowing with critically ill patients. Consequently, discharging patients from the hospital as soon as possible has become fiscally prudent, and patients return home sooner and sicker. The healing environment, then, becomes the home rather than the hospital, and greater responsibility is placed on the patient and family members or other caregivers. These changing social trends are actually forcing a shift from passive patienthood to a more proactive survivorship.

Semantics of Survivorship

The concept of survivorship was initially introduced to the field of oncology in 1986 with the founding of the National Coalition for Cancer Survivorship. The events preceding this organizational meeting included medical advances and social trends that provoked exploration of new issues related to cancer. As new therapies became available to treat cancer, the hopes and expectations of surviving this disease were elevated. Access to information about scientific breakthroughs became readily available to the general public; awareness about cancer prevention, early detection, second opinions, and treatment options increased; many types of cancers shifted from acute to chronic diseases; and some patients were actually cured. Oncologists were finally able to rejoice, along with their patients, because not everyone would die of this feared disease. Yet, as patients and family members savored the sweetness of survival, they also realized that life would never be the same and that it would always be full of uncertainty. In Of Dragons and Garden Peas, wherein a patient talks to doctors, Trillin sums up this dilemma: “So, once we have recognized the limitations of the magic of doctors and medicine, where are we? We have to turn to our own magic, to our ability to ‘control’ our bodies” (6).

Control comes in many forms. It was not too long ago that the cancer patient’s agenda was more often than not set by health care providers, especially physicians. Eventually, patients decided to take more control, either directly or indirectly, over all aspects of cancer care that affected their lives. Therefore, support groups, hotlines, resource materials, and patient networks proliferated. As the shift to recognize the consumer voice began, the concept of survivorship emerged.

Mullan describes survivorship as “the act of living on … a dynamic concept with no artificial boundaries” (7). Carter further describes this theme as a process of going through, suggesting movement through phases (8). From these models, the concept of survivorship is viewed as a continual, ongoing process rather than a specific time frame, stage, or outcome of survival (9). Survivorship is not just about long-term survival, which is how the medical profession generally defines it. Rather, it is the experience of living with, through, or beyond cancer (10, 11). From this point of view, survivorship begins at the moment of diagnosis and continues for the remainder of life (7, 10).

Although this philosophic definition of survivorship as a continual process is accepted by many advocates, it is not necessarily the case within the medical community. Physicians tend to define survivorship as a phase of cancer care, specifically the time right after initial treatment is completed and there is no evidence of disease. It will end if the disease recurs, if a secondary malignancy is diagnosed, or the survivor enters the phase of palliative care or dies. This difference in viewing survivorship as a stage versus a process exemplifies differences between medical or quantitative models of health care delivery and psychosocial models that are more qualitative in nature. Neither model is right or wrong. But because there is still no consensus on what survivorship actually means, it becomes imperative that the term is defined within the context it is used.

Other discrepancies in semantics revolve around who is or is not a cancer survivor. When cancer was considered incurable, the term survivor applied to the family members whose loved one had died of the disease. This terminology was used for years by the medical profession and insurance companies. But when potentially curative therapy became a reality, physicians selected a 5-year parameter to measure survival. Freedom from disease and biomedical longevity became the standards of success where the outcome was measurable and quantifiable.

As treatment successes improved over the years, this limited definition failed to consider patients who are not cured of their disease, require maintenance therapy, or periodically change treatment modalities, yet remain alive for more than 5 years. Others experience late recurrences, are diagnosed with second malignancies, or develop delayed effects of treatment. Even as the 5-year landmark has been modified as a parameter for describing survival, medical professionals seem inclined to categorize anyone receiving therapy or not completely free of disease as a “patient” and everyone who is not under treatment or with no evidence of disease as a “survivor.”

Many individuals who have histories of cancer feel that survivorship extends far beyond the restrictions of time and treatment. Yet, while many individuals with a history of cancer love the term survivor, just as many abhor it. Labels such as victors, graduates, triumphers, veterans, and thrivers are now part of the survivorship lexicon. Others express a greater sense of power as activists, advocates, conquerors, and warriors. More recently, an African-American group considered survivorship a spiritual journey and asked to be called the blessed. Although all these labels can confuse providers and consumers alike, Gray (12) notes in Persons With Cancer Speak Out that, “The act of defining is an act of power.” This is all about the individuals—the survivors—identifying their own issues and defining themselves rather than relying on the agendas and descriptives of the health care community (9). Again, any or all of these labels can be considered correct and simply need to be defined when clarification is needed. Therefore, the term survivor in this chapter reflects the National Coalition for Cancer Survivorship definition: “from the time of its discovery and for the balance of life, an individual diagnosed with cancer is a survivor” (7, 10).

Stages of Survival

Obviously, cancer survivors have different issues, depending on their circumstances along the survival continuum. In the classic article, “Seasons of Survival: Reflections of a Physician with Cancer,” Mullan (13) was the first to propose a model of survival that includes acute, extended, and permanent stages.

Acute Stage

The acute (or immediate) stage begins at the time of the diagnostic workup and continues through the initial courses of medical treatment. The survivor is commonly called a patient during this stage, and the primary focus is on treating the disease and physical survival. Usually, without any prior training, individuals diagnosed with cancer are required to make sophisticated medical decisions at a time of intense vulnerability, fear, and pressure. Inexperienced in navigating the complicated culture of medicine, many survivors continue to rely solely on their physicians to make treatment-related decisions. Others, though, ask for information, explanations, and more effective communication in an attempt to understand their choices.

Although supportive care services are most available at the time of diagnosis and treatment, their availability is at risk due to current cost constraints. If clinics and hospitals are unable to meet the increasing demands for supportive care at this stage, community-based models of support often fill in some of these gaps. Access to the health care team, counselors, patient support networks, resource libraries, hotlines, advocacy organizations, and family support systems helps survivors navigate this initial stage of survival. But the picture changes, sometimes dramatically, once treatment ends.

Extended Stage

If the disease responds during the initial course of therapy, the survivor moves into the extended (or intermediate) stage of survival. This stage is often described as one of watchful waiting, limbo, or remission, as survivors monitor their bodies for symptoms of disease recurrence. Uncertainty about the future prevails, as medical-based support systems are no longer readily available. Recovery entails dealing with the physical and emotional effects of treatment, and reentry into social roles is often challenged by ignorance and discrimination.

Although no longer a patient, the individual may not feel entirely healthy and may have difficulty feeling like a survivor. Ambiguity defines this stage, as survivors find themselves afloat in a mixture of joy and fear, happy to be alive and finished with treatments, yet afraid of what the future may hold.

The need for continued supportive care during this transitional stage began to receive attention in the mid-1980s as community and peer networks started augmenting or replacing institutional support (7, 8, 9, 10, 11). Because recovery from most types of cancer treatments entails regaining both physical and psychological stamina, rehabilitation programs might include physical and occupational therapies, exercise programs, nutrition classes, support groups, individual counseling, family therapy, or vocational training. There is no particular timetable for this type of rehabilitation or reentry to happen.

Permanent Stage

For many survivors, a certain level of trust and comfort gradually returns, and the permanent (or long-term) stage of survival just seems to happen. This is roughly equivalent to cure or sustained remission. Although most survivors experience a gradual evolution from a state of “surviving to thriving,” as described by Hassey-Dow (14), others must deal with the chronic, debilitating, or delayed effects of therapy. Although many of these long-term survivors have no physical evidence of disease and appear to have fully recovered, the life-threatening experience of having survived cancer is never forgotten. The metaphor of the Damocles syndrome illustrates the apprehension or fear of living under the sword, never knowing whether or when it might drop (15, 16).

For many cancer survivors, long-term follow-up tends to be as unpredictable as today’s health care system. Generally, there are scant, if any, guidelines for specific follow-up, nor are there wellness-focused programs tailored to the altered health care needs of this population. One exception is pediatric oncology, which is far beyond adult oncology in the systematic follow-up of long-term survivors. Standardized assessments in specialized clinics help identify problems, such as disease recurrence, second malignancies, or late effects of treatment, and interventions can be initiated as soon as possible.

Adults, on the other hand, often feel burdened by a “glorification of recovery” (17), whereby they are praised for overcoming adversity and encouraged to minimize their complaints. The appearance of health can actually hamper the identification of real problems, as no one wants to believe that something might still be wrong (17, 18). But symptoms of distress, both biomedical and psychosocial, must be taken seriously. And, in this age of cost containment and managed care, survivors need continued access to appropriate specialists who understand the consequences of survival and can treat accordingly.

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