“I spent five years of my life being treated for cancer, but since then I’ve spent fifteen years being treated for nothing other than looking different than anyone else. It was the pain from that, from feeling ugly that I always viewed as the great tragedy of my life. The fact that I had cancer seemed minor in comparison.”1
—Lucy Grealy, 2003, Autobiography of a Face
This article will address the psychosocial impact of the perception of disfigurement as a result of treatment for cancer. Our intent is to provide the context, guidelines, and recommended interventions for oncology nurses to consider when treating patients whose surgeries leave disfiguring scars. By providing this guidance, we hope to help nurses both ameliorate their patients’ suffering and help them achieve their “new normal.” Issues related to self-image, disfigurement, and sadness continue to gain importance as the number of newly diagnosed cancer patients increases and survival rates improve.2,3 Oncology health professionals may not always realize that, in spite of a favorable prognosis, many patients experience significant levels of anxiety, sadness, and depression long after their diagnosis.4 What might be considered a routine treatment or workup by the oncology healthcare team may be a traumatic and frightening experience for the patient. It is essential that treatment plans include a comprehensive assessment of patients’ biopsychosocial distress and a well-thought-out protocol for intervention and care.5
Anxiety, Depression, and Self-Esteem
Anxiety during and after cancer treatment is normal. For some it is a constructive part of their coping process. However, anxiety may continue long after treatment ends and become a major disruptor in a survivor’s life, leading to depression and loss of self-esteem.6 Survivors often struggle with feelings of being “damaged goods,” flawed, or defective for years after treatment. Some may try to hide their personal feelings about their cancer experience from their family, spouses, partners, and close friends. Rediscovering a whole and worthy sense of self is difficult and takes time.7 Many surgeries leave visible scars for patients. Consider the short-term and long-term impact of the following: mastectomy, colostomy, hysterectomy, prostatectomy, head and neck surgery, and amputation. In addition, patients experience hair loss or excessive hair growth, weight changes, hot flashes or hot flushes, incontinence, impotence, loss of libido, fatigue, neuropathy, and chemobrain due to treatment side effects. These contribute to a changed or altered sense of self and body image.
Quality of Life
Quality of life refers to the psychosocial, emotional, and physical outcomes of cancer treatments. It is constantly susceptible to variation—highs and lows. Patients interpret their feelings of well-being through the filter of their own expectations, perceptions, experience, and religious, cultural, and/or community beliefs. It is not possible to make assessments about a patient’s quality of life without speaking with the person directly, as it is the patient’s own perception and life experience that informs his/her quality of life. Clinicians may not always realize that, in spite of a favorable prognosis, many patients experience high levels of anxiety, fear, sadness, insomnia, and depression after a diagnosis.4 Many cancer centers now routinely screen for sadness, distress, anxiety, and depression.8 Although some adjuvant therapies may enhance control of the primary tumor, thereby increasing quality of life and survival, the patient’s experience with these therapies may vary due to increased time in the hospital, doctor visits, side effects, loss of wages, decreased energy or time for social activities, recuperation time, and added stress on family and friends. Monitoring a patient’s self-esteem and sense of well-being, as well as screening for distress while preserving physiologic functioning, provides the best possible quality of life for patients.
We live in a society that is consumed by the ideal image of beauty. Attractive individuals have been known to receive preferential treatment in healthcare, academia, and when seeking employment or career progression. There are few positive role models of disfigured people in the media.
Social norms change when a person looks, smells, or sounds different. Patients may feel highly visible—people stare. Strangers feel they have permission to comment and ask questions about their appearance. A person with a disfigurement may feel uncertain of what to expect from others or what to say in response. Many feel they are on display all the time and have to maintain a constant vigilance, which results in increased self-consciousness. Some will feel alone and isolated. Others may restrict their social activities or believe they cannot have intimate relationships.9 They often express feelings of anger, unfairness, embarrassment, and a need to be fixed. Sometimes there is a lack of communication with family and friends. Patients also endure social pressure associated with their changed or disfigured appearance.
These physical changes can affect psychosocial functioning, leading to low self-esteem, depression, somatization, withdrawal, and social distress. A visible disfigurement impacts not only the thoughts, feelings, and behaviors of the patient or survivor, but also how they are perceived and treated by others.10
Other Factors to Consider
“What changed…was other people’s perceptions of me. …Everyone…regarded me as someone who had been altered irrevocably. …I had become special, no longer like them. Their genuine concern for what had happened to me and their complete separateness from it expressed exactly what I had felt all my life about anyone I had ever known who had experienced tragedy.”11
—Alice Stewart Trillin, 1981, “Of Dragons and Garden Peas—A Cancer Patient Talks to Doctors,” New England Journal of Medicine
Alice Trillin poignantly describes how the diagnosis of cancer exquisitely changed others’ and her self-perception. How patients feel they are perceived, as well as social factors (both positive and negative) that they experience throughout life, may affect their body image, and a negative body image and low self-esteem have a major impact on feelings of depression and quality of life. Communication is important for many in resuming intimacy after cancer. Patients and survivors often benefit from seeking professional counseling to cope. Oncology nurses play a key role in helping patients, initially by helping them view disfiguring surgery in the security and comfort of a cancer center, coupled with compassionate and practical instruction to patients and caregivers on wound and ostomy care.12 The oncology nurse’s willingness to care for these patients, to talk with them and touch them in delivering their care, helps patients feel less stigmatized and more accepted. The expertise and compassion of a skilled oncology nurse speaks volumes to patients dealing with disfiguring surgery, and their caring acceptance of the patient creates a spark of hope for those in despair of being abandoned by others.
The location of the disfigurement or scar plays a role in the patient’s risk for psychosocial distress: visible scars on the face, hands, arms, and legs as opposed to scars on the body, which are more easily camouflaged. However, hidden disfigurements and scars may be as distressing as visible ones, as patients may be concerned about concealment and inadvertent exposure of their disfigurement. Body image may be associated with the type and location of cancer, treatment side effects, cancer recurrence, frequency of hospital and doctor visits, and the treatment course.10
Ethnicity, race, socioeconomic status, age, and gender may all play a crucial role in how one recovers from a cancer-causing disfigurement. Every culture is different in how it perceives disfigurements. Also, individual characteristics such as optimism, extroversion, athleticism, and a repertoire of coping skills may facilitate better adjustment and coping throughout treatment and posttreatment survivorship. Stage in the life cycle is critically important to keep in mind in assessing the impact of cancer and disfigurement. Much attention has been paid recently to adolescents and young adults with cancer and how best to assist them, including “peer support and technology-based interventions.”13
Appearance concerns have been associated with decreased quality of life, anxiety, and depressive symptoms. These symptoms require assessment and intervention by the healthcare team, which can be individual, group, or community-based supportive interventions.
Professionally led support groups in the community help cancer survivors with self-esteem and disfigurement issues bond with others to feel more connected with a cohesive network. Individual, group, and community-level interventions such as counseling and awareness programs in cancer centers are important psychosocial interventions. Adjustment is an ongoing process, unique to each person, and close surveillance, distress screening, and follow-up visits are important, since the needs of patients and survivors change over time. With the aid of educational workshops, booklets, and fact sheets, patients can learn creative problem-solving techniques to help them cope with their cancer trajectory and its particular challenges.14
The Role of the Healthcare Team
Diminished contact with the healthcare team posttreatment is perceived as a loss to patients who believe that the care provided contained or cured their cancer. This perceived abandonment by the healthcare team may cause patients to feel more vulnerable and anxious. It also severs what seems like the last tie to a group that understands the patient/survivor’s feelings. Survivors may become impatient, frustrated, and isolated, and feel alone when they are unable to find people who can relate to their story. The healthcare team may be able to provide assurance that these feelings are normal; they can also refer the patient to an oncology nurse or social worker to address the distress that is being expressed or to a community-based or national nonprofit organization for psychosocial support.7 Many patients benefit from participation in 1-hour teleconference workshops, webcasts, and podcasts that do not require travel time or costs. These virtual programs, coupled with telephone and online supportive interventions, provide a community of support for patients and survivors.15
Many cancer survivors become lost in transition and receive inadequate and poorly coordinated follow-up care.16 The reasons for this failure are many and include the tendency of the oncology team to underestimate the distress felt by patients and therefore not provide them with appropriate or adequate resources.8 To ensure the most efficient way to deliver psychosocial services, the following guidelines are recommended: identify psychosocial needs; refer patients to needed services; support patients and families in managing cancer and survivorship; coordinate their care; and schedule follow-up psychosocial care to support their ongoing functioning.5,16
It is critically important that the healthcare team take note of the psychological and social aspects of their patients,5,17 as these are key life components that impact daily quality of life. As additional resources and support are made available to survivors, their emotional and psychological well-being may be enhanced to facilitate finding their “new normal.”
For example, MD Anderson Cancer Center recently launched The Body Image Therapy Service, which provides support and counseling to patients experiencing distress about changes to their body image. This service is available to patients being seen in the Center for Reconstructive Surgery and Head and Neck Center. The Body Image Therapy Service program offers a multidisciplinary coordinated service for patients to discuss their body image concerns and how these are impacting their daily life. Michelle Cororve Fingeret, PhD, a clinical psychologist and body image specialist in the program, works with patients individually to teach coping strategies “to promote body image acceptance, focus on ways to increase self-confidence in social situations, discuss treatment decisions they need to make that will affect their bodies, set realistic expectations for body and appearance related changes and communicate more effectively with others about appearance and body changes.”10
How Nurses Make a Difference
When a person is diagnosed with cancer, the oncology healthcare team will be involved in the medical and psychosocial management of the cancer patient. The team includes oncology medical specialists, oncology nurses, oncology social workers, reconstructive and plastic surgeons, rehabilitation specialists, pain and palliative care teams, speech and swallowing clinicians, dermatologists, and dietitians.
Using a biopsychosocial approach, oncology nurses help patients address their medical questions, pain, and sadness. Patients and their caregivers can talk with oncology nurses about their concerns and worries and receive practical guidance in their management of cancer treatments, surgeries, side effects, and pain. These practical and informative conversations with oncology nurses provide physical support while being a beacon of hope, not only for patients but for their caregivers as well.
Nurses can help patients normalize the appearance-related changes that can occur during and after cancer treatment. By providing an objective view of how an affected area appears, including offering a mirror to patients during the initial dressing change and discussing how the patient is feeling, nurses can help patients open up to different possibilities in their way of thinking about how to cope with their disfigurement, both practically, psychologically, and spiritually.12
There are many steps the oncology nurse can take to help patients achieve a positive body image, including discussing with patients what they can do—their strengths—and what they are not able to do; helping patients access reconstructive and rehabilitative teams to help them cope with the challenges imposed by surgery or treatment; discussing the special attributes they value in themselves; and referring patients to support groups and individual counseling and guidance.10,15
Posttraumatic Growth After Cancer
Posttraumatic stress is defined by feelings of anxiety and fear following a frightening or life-threatening experience, such as receiving a cancer diagnosis and undergoing treatment. However, for some, this experience promotes the potential for transformative change. Posttraumatic growth is “positive psychological change experienced as the result of struggle with highly challenging life circumstances.”18 The lessons learned through the process of coping with a challenging situation may translate into personal growth that may be expressed in a number of ways:
- Improved interpersonal relationships
- New life experiences and career choices
- A greater appreciation for life
- A sense of personal strength and endurance
- Spiritual development
It should be noted that experiencing transformative growth does not necessarily mean that the patient/survivor has overcome the stressor. In fact, most people who report personal growth also report simultaneously experiencing struggles with their trauma. Nevertheless, some patients and survivors are able to “create meaning through their experiences with cancer.”19
Posttraumatic growth is by no means universal. Research suggests there are certain factors that make patients more likely to experience transformative growth. These include participation in professionally facilitated support groups, ability to confront trauma and focus on new experiences, and access to a support network that encourages personal growth and individual coping strategies that help patients adapt to new challenges.20
Although patients may have visible and invisible scars from their cancer treatment, there are many clinical interventions to help patients and their loved ones cope. Body image therapy can be extremely beneficial in restructuring distorted thoughts and/or beliefs about a patient’s appearance. Behavioral strategies may promote positive self-care activities and decrease avoidance/distress. In addition, social skills may be taught using role-play so that patients learn how to deal with their disfigurement in social encounters. Body image therapy also educates the patient about the particular disfigurement and its treatment options, thus allowing patients to know about treatment choices and learn decision-making skills.10
Conclusion: Lessons Learned
“Illness is the night-shade of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”21
—Susan Sontag, 1978,
Illness as Metaphor
The oncology nurse is strategically positioned to make a major difference in patient care and contribute to the lives of both patients and caregivers. Because they are at the patients’ bedside right after surgery as well as there to care for them during the course of treatment and survivorship, oncology nurses gradually, day-by-day, introduce patients to other members of the healthcare team.
The oncology nurse is well versed in the unfairness of life, cancer, and its random quality. The compassion and expertise of oncology nurses can help relieve the stigma, despair, suffering, and aloneness that patients feel, and the empathy, acceptance, and skilled care they provide to patients living with disfigurement, as well as the debilitating side effects of treatment, are a lifeline of hope for those whose world has been forever changed.
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