Psychosocial Impact Of Breast Cancer
WHEC Practice Bulletin and Clinical Management Guidelines for healthcare providers. Educational grant provided by Women's Health and Education Center (WHEC).
Breast cancer treatments present significant challenges and distress; most patients learn to live with the disease and to incorporate it into day-to-day living. Adaptation to illness is more than the absence of psychopathology or the end point of coping. Adaptation involves the psychologic processes that occur over time as the individual and family manage the ramifications of breast cancer diagnosis. In essence, most patients posses problem-solving skills that effectively resolve the many difficulties associated with treatment and rehabilitation. Because patients vary in their ability to respond to these challenges and problems, careful consideration must be given to understanding the individual variations in psychologic reactions. Major rehabilitation problem areas include physical, psychologic, social, sexual, nutritional, financial, and vocational ones. Each of these domains contributes to each patient's sense of overall well-being or quality of life; however, rehabilitation efforts often ignore the spiritual domain, which also figures into any such measurement.
The purpose of this document is to stress upon the factors such as psychologic state, level of optimism, spirituality and support from sources such as family, friends and healthcare team in the recovery of the patients with breast cancer. The psychologic distress remains constant over the disease continuum as patients move from diagnosis and treatment to recovery and survivorship. These factors present unique challenges to the healthcare team, and if undetected and untreated psychologic distress can jeopardize treatment outcomes and actually increase healthcare costs.
When the patient is offered the opportunity and encouragement to learn about her disease and understands that she has options to consider for her treatment that are presented in an atmosphere where her questions and opinions are respected, she will be much more trusting of her medical treatment team and confident in the choices identified. Knowing that no cure for breast cancer exists but that treatments and clinical trials with good results are available to her is encouraging. The surgeon is also on the front-line of the battle. It is surgeon's responsibility to provide her with the tools she will need to make her experience as positive as possible.
Cancer is more than the initial diagnosis. When a woman is suspected of having breast cancer or when a woman is diagnosed as having breast cancer, she most often feels immediately vulnerable, overwhelmed by impending mortality and profoundly alone. There is no way for a woman to prepare herself to hear "There is something on your mammogram or there is a lump in your breast. We have to do a biopsy". Instant fear, and often panic seem to take over her entire being. For many patients with breast cancer, survivorship begins on the day of diagnosis as women embark on the work of accepting their diagnosis and thus redefining all aspects of their lives.
Four primary points exist in the psychosocial care of cancer patients (1). First, patients experience an "existential plight" during the first 3 months after their diagnosis. Although most patients strive to regain a sense of normalcy while struggling to accept that their lives will never be the same. Second, if a remission occurs, patients begin to live with their cancer. Most of the patients begin to incorporate disruptions of daily life into their routines. Third, the fear of recurrence or the actual event further complicates the psychosocial course for each patient. Knowledge and support from the team enable patients to anticipate and understand their course after recurrence. Although absent at diagnosis, this critical knowledge often lessens distress at recurrence. Finally, if treatment fails, terminal illness and the potential threat of abandonment confront patients with greatest challenge to adaptation. Some patients possess the capability to adapt to a terminal illness, but many never accept death (2).
Psychosocial screening provides the opportunity to identify and predict which patients are more distressed and consequently are unlikely to adapt to the many stressors associated with a cancer diagnosis and its treatment. Techniques for psychosocial screening of patients who have been newly diagnosed range from structured interviews to self-report psychologic instruments. Brief and efficient methods that use self-report measures may also be cost effective. In some cases a brief psychologic instrument can be incorporated into an outpatient clinic registration process and require only 1 to 2 minutes of patient time. Such a process also maximizes the utilization of psychosocial resources because these providers can identify patients with highest level of distress.
Advances in cancer treatments continue to increase and as a result patients with cancer need help in normalization of their daily lives to achieve optimal physical, psychologic, and social functioning. Sexual functioning is a critical factor in the physical, psychologic and social rehabilitation, given that breast cancer can affect body image and self-esteem as well as the relationship with spouse or partner. Timely recognition of patients' sexual needs and dysfunctions is essential to comprehensive cancer care. Patients may also be reluctant to raise sexual issues as a concern because they too are embarrassed and need a professional to begin the discussion to normalize it as one component of overall care. A lack of discussion can be interpreted, as sexuality is not a salient issue. Finally, reluctance may also stem form the myths about cancer and sexuality that are still prevalent today. Fears that cancer is contagious through sexual activity, that having sex may cause a recurrence, that cancer is a punishment for past-sexual misconduct, or that a sexual partner may be exposed to radiation if the patient is receiving external-beam radiation therapy are but a few of the common misunderstandings. To address these misconceptions and to engage in a total psychosocial rehabilitation of the patient with breast cancer, healthcare personnel need to conduct a sexual assessment as part of their routine care. A large proportion of sexual dysfunctions have psychologic as well as physiologic origins, and it is thus important to differentiate between the anatomic changes and the emotional effects of the disease. Discussion about the sexuality is important, because there are many products that can alleviate many of these problems and can make patient feel desirable.
Quality of Life:
The concept of quality of life continues to create struggles for clinicians and researchers in that it is difficult to reach consensus on its definition and on techniques to measure it. Despite a consensus that the goal of medical care is the preservation of life and well-being, the clear majority of clinical trials fail to include any qualitative assessments of the subjective experiences of the patient as an outcome. The most commonly studied domains are physical, psychologic, social, economic, and global well-being. Self-report provides patients the opportunity to describe their quality of life from their perspective rather than relying on evaluations by physicians, family members, or other caregivers. Given that life can be defined from both a quantitative and a qualitative perspective, quality of life in relation to cancer therapies and rehabilitation provides an additional measure that can be used to substantiate treatment outcomes. Quality of life can be measured globally with use of such instruments as the Functional Living Index- Cancer, the Functional Assessment of Cancer Therapy, and the Satisfaction with Life Domains Scale (3).
One salient aspect of the distress of life-threatening or terminal illness is spirituality or one's spiritual self-awareness. Awareness of spirituality should be fundamental to the study of psychosocial distress related to any life-threatening or terminal illness. Acknowledgement of the spiritual aspect of the person is based on the principle that there are powerful forces within the psyche that propel us toward greater wholeness and the integration. People can be helped to accept their own mortality within a framework that normalizes death. Whether or not a poor prognosis is ever indicated, clinicians observe that patients with breast cancer, at the time of diagnosis and throughout their illness, enter a process of exploring what life and death mean to them. As this exploration begins, traditional values and spiritual belief systems are questioned and challenged. Higher level of spirituality is associated with an increase in the patient's ability to normalize death. As a result, patients experience lower levels of psychosocial distress. Patients accrue spiritual perspectives over the life-span, and as a result they can maintain a sense of well-being on the face of perceptual losses associated with a life-threatening illness and death. Smith et al proposed a model of intervention in the transpersonal realm to facilitate and normalize death and to heighten spiritual awareness (4).
As an increasing number of breast cancer patients are now either cured of their disease or live for many years with it, they face the complex process of adjusting to life after cancer treatment. This has created a growing population of cancer survivors who have successfully completed their cancer treatment but have a number of special needs. Cancer survivors generally experience challenges in four critical life domains:
- Physical health
- Psychologic and social well-being
- Maintenance of adequate health insurance
Psychologic and social well-being of cancer survivors are challenged on a number of fronts. Although no two breast cancer survivors respond identically, emotions confronted include elation to be finishing treatment, residual shock, anger, grief, sadness, and existential questioning. Patients who lack social support, have a psychologic history, have severe physical limitations or have a pattern of maladaptive coping may experience even higher levels of distress and will be impeded in their adjustment. The National Cancer Institute has developed a booklet as a guide for cancer survivors titled: Facing Forward, which addresses these four domains (2).
Return to work after surgery and adjuvant treatments provides relief as well as potential stress. On the positive side, work represents the beginning of a return to normalcy and in many ways work serves as a distraction from the rigors associated with a breast cancer and related treatments. However, the lack of physical endurance related to fatigue may persist, which can hinder work performance. Cancer in the work-place can be equated with a social stigma because colleagues and co-workers are unprepared to respond to dramatic physiologic changes. Discomfort in the work environment can result in social isolation and significant fears of termination from the job, which may create the most significant fear -- loss of healthcare benefits.
Coping with Loss:
Loss is a universal experience, but breast cancer represents multiple losses. Given the symbolic nature of the breast cancer in our culture, definitions of femininity are challenged. If the emotions associated with these losses remain hidden, relationships can be severely disrupted. Acknowledgement and open communication foster awareness of the meaning of the loss for both the patient and her partner. In many respects, involvement of the spouse or partner before surgery in medical discussions and education programs provides opportunities for them to prepare for these issues. Loss generates fear, anguish, sadness, and grief. Each is normal reaction to the diagnosis of breast cancer and surgery. Acknowledgement of emotional reactions facilitates movement through treatment, rehabilitation, and recovery. If these reactions persist or increase in intensity, counseling through a social worker or a psychologist may be indicated. A support group may be helpful for open discussion, clarification of emotions and development of problem-solving skills. If the reactions are severe, psychotherapy may be appropriate to address persistent symptoms such as anxiety or depression. Because patients with breast cancer experience more anxiety, cognitive-behavioral interventions should also be considered.
Daughters of Breast Cancer Patients:
Given the significant advances in cancer genetics, concerns continue to increase related to the increased risks of breast cancer for the first-degree relatives. For daughters of premenopausal breast cancer patients, the risk can increase six-folds (5). The major issue is how to manage the anxiety of these daughters as they gradually approach the age when their mothers were diagnosed. Clearly risk-related information must focus on the probability of developing breast cancer rather than of dying from the disease. Identification of risk without an effective management plan can only exacerbate preexisting psychologic distress. Furthermore, distress may cause a woman to dramatically overestimate her cancer risk. Increased risk of breast cancer can generate significant anxiety and fear. Exploration of this issue should result in a detailed understanding of women's fears and worries of developing breast cancer. If consistent reassurance and support do not reduce distress, appropriate referrals for psychologic assessment and counseling are warranted.
Psychosocial Interventions for Breast Cancer Patients
The application of non-pharmacologic, psychosocial interventions with cancer patients and their families had gained increased support and recognition over the past decade. There are variety of psychosocial interventions with the aim of decreasing distress and improving quality of life in those dealing with the stress and disruption associated with a diagnosis of cancer. In addition, breast cancer patients commonly report concerns related to sexuality, body image, and relationship difficulties. When determining the most important intervention, it is important to consider several factors: the timing of the intervention; the primary goal of the intervention; and the most effective modality. Psychosocial interventions can assist patients in gaining a sense of control over their situations.
Timing of Intervention:
Brief pre-surgical interventions can help women prepare for surgery and for changes in their body following surgery and adjuvant treatments. Interventions that occur shortly after the initial diagnosis of breast cancer can also provide psycho-education and may assist patients in making adaptive decisions related to treatment (eg, type of surgery, whether to have reconstruction), in adjusting to post-surgical issues (eg, loss of breast, lymphedema), and in long-term planning (eg, change in relationships and end-of-life issues). Therapy or counseling provides cancer patients and their families the opportunity to express their feelings and concerns without being judged or feeling as though they are burdening others. In addition, interventions can help patients manage some of the aversive side effects of cancer treatment, including pain and cancer-related fatigue. Individual or group interventions can also assist patients in developing and refining various skills, such as managing stress, increasing social support, and improving coping skills.
Interventions aimed at cancer survivorship assist with the process of reprioritization while helping patients deal with their sense of powerlessness and loss of control over their futures. Cancer recurrence or progression presents a somewhat different challenge for health professionals. Managing pain, decreasing or controlling adverse side effects and dealing with issues of loss are typically the focus of interventions with this population. Many patients may be interested in interventions that allow them to focus on spiritual and existential issues. In addition, mind-body approaches to treatment (eg, meditation, gentle yoga, prayer) may be especially helpful in this group in that such approaches provide patients with a sense of control and mastery, which is particularly important when medical control of the disease has decreased.
Psychosocial Interventions with Different Goals:
Decreasing distress and improving positive psychosocial adjustment are beneficial to almost all patients newly diagnosed with cancer. In addition, interventions that instruct patients in self-help techniques to control treatment side effects can have an enormous impact on quality of life. Symptoms of anxiety typically respond well to cognitive-behavioral therapy, and anxiolytic medication is recommended only for acute treatment of anxiety. Anti-depressants are recommended for patients with severe depression that has been resistant to psychotherapy. Because chemotherapy may induce various gastrointestinal symptoms, anticipatory nausea may develop. Similarly because radiotherapy procedures may induce fear reactions (including claustrophobia related to the treatment machines), anticipatory anxiety may develop in some patients. If such symptoms increase in severity, a patient may become non-compliant with treatment. Therefore, the interventions focused on direct treatment-related effects may also improve compliance with future treatment.
Pharmacologic treatment of cancer pain may involve the use of non-opioid analgestics for mild to moderate pain and opioid analgesics for moderate to severe pain. Non-pharmacologic interventions recommended for treating cancer-related pain and associated psychologic symptoms include individual and group interventions comprised of the any of the following techniques: psychotherapy, cognitive-behavior therapy, relaxation exercises, imagery/ distraction exercises, hypnosis, and/ or biofeedback. Life-style modification programs may assist patients in developing new health behaviors that will decrease the probability of recurrence or the development of new cancers as well as limiting the development of other comorbid disease: such as diabetes, coronary heart disease or pulmonary diseases.
The chronic challenge of dealing with cancer may play a role in neuro-endocrine dysregulation that can lead to changes in immunity that may in turn contribute to disease progression. Although there is strong evidence for the impact of psychologic interventions on neuro-endocrine and immune system functioning, evidence for a direct impact of psychosocial interventions on health outcomes is less compelling. Nevertheless there is little doubt that such interventions can help ease distress and increase quality of life.
Interventions of Different Modalities:
Despite the fact that few studies have directly compared the efficacy of group versus individual treatment, available evidence indicates that both individual and group cognitive-behavioral therapy is effective in reducing psychologic and physical symptoms among patients (6). Individual therapy may range from cognitive-behavioral therapy, focusing on the restructuring of negative thoughts and feelings to emotional-expressive or supportive psychotherapy. Involvement in individual psychotherapy after a life-threatening event, such as the diagnosis and treatment of cancer, can be particularly productive because the patient may be ready to make changes in her life and to reevaluate values and goals.
Group Interventions: these are particularly attractive to breast cancer patients because they allow participants to get emotional support and share information with those who have had similar experiences. Group participants have the opportunity to practice new skills with other patients and witness how others handle the multiple stressors associated with cancer treatment and cancer survivorship.
Family Therapy: when a family member is diagnosed with cancer, all members of the family are affected in some way. The family therapist must assess the family's developmental level, unique style, and patterns of interaction to best assist the family in adjusting to changes precipitated by the cancer diagnosis. The therapist should also consider how the roles of each family member have changed since the diagnosis.
Couples Therapy: while focusing on the needs of loved ones diagnosed with cancer, spouses may overlook their own needs. The focus of the intervention may be learning to balance the needs of the patient and spouse so that both can provide support for each other. Consideration should be given to issues specific to the patient's diagnosis and treatment. For example, couples therapy following mastectomy may focus on issues of body image and sexuality that affect both the patient and her partner.
Measurement in Group Interventions for Women with Breast Cancer:
Has progress been made in instrumentation for psychosocial intervention studies in general and group intervention in particular? Almost 10 years ago, Gotay and Stern (1995) did a thoughtful review of instrumentation to measure psychological functioning of cancer patients. The problems they raised related to reliability, validity, norms, cultural sensitivity, and cancer specific instruments are still of concern today. Also, early group researchers compiled a core battery of instruments to use in the evaluation of treatment outcomes (Dies & MacKenzie, 1983). Yet, no core battery of instruments has been proposed or utilized in the multiple cancer group intervention studies even though researchers continue to emphasize the importance of instrument selection (7). This lack of a common set of psychometrically sound and theoretically appropriate measures makes comparison among studies difficult and hampers scientists' ability to build a body of knowledge on the effectiveness of group interventions. Without such a battery, future researchers face a maze when initiating a study on group interventions in cancer care.
Research results are inextricably bound to the theoretical fit and psychometrics of instruments chosen to measure outcomes (Lipsey, 1993). Therefore, it is critically important for future researchers to carefully consider instrumentation when designing research studies. Furthermore, more work is needed to establish operational and theoretical definitions for common cancer outcomes such as mood and to develop psychometrically sound instruments to measure these concepts. In particular, more work is needed to develop instruments specifically designed for and with cancer patients rather than simply crude adaptation of instruments designed to measure similar constructs with dissimilar populations (8). Stronger operational and theoretical foundations, instruments developed with and for cancer patients as well as the development of psychometrically sound instruments will lead to stronger intervention studies with common outcomes and measures so that comparisons can be made among studies. Such efforts may build scientific knowledge about the efficacy and effectiveness of group interventions in cancer care.
Breast Cancer and Sexuality:
Cancer treatment, especially chemotherapy, creates changes in the female body that affect sexual desire, sexual functioning, and emotional relationships. Although healthy women also experience physiological changes leading to menopause, these changes occur gradually leaving them sexually active 5 to 10 years longer and with fewer problems in sexual functioning. Studies show that breast cancer patients experience sexual problems soon after treatment, and continue in follow-up. Research also describes the normal decline in sexuality among healthy women as they age. Furthermore, relationship problems occur when couples experience sexual problems, sometimes threatening their attachment. These problems can be anticipated and addressed through the physician's communication with their patient. Other solutions include effective psychologic, emotional counseling, pharmaceutical, over the counter assistance for hot flashes, vaginal dryness, and pain to assist with the physiological issues (9).
Survival for cancer has improved significantly in the last 25 years with excellent overall 5- and 10-year survival rates. Hence, the majority of young women diagnosed with cancer can expect to live for decades, making quality of life issues such as fertility increasingly important. Risks of infertility vary based on the chemotherapy and treatments employed, as well as a woman's age. In general, younger women are less likely to experience permanent amenorrhea than older women, but even women who continue to menstruate have a greatly increased risk of premature menopause. Options for patients with cancer entering chemotherapy treatment, who wish to preserve fertility range from clinically well-established techniques such as embryo cryopreservation to more experimental techniques such as ovarian tissue cryopreservation. Pregnancy does not appear to increase the risk of cancer recurrence (10). Discussions of fertility issues in premenopausal women diagnosed with cancer present important challenges to the provider and to the patient. However, failure to discuss these options adequately can have lasting negative consequences on a woman's quality of life. Physician education interventions should seek to improve the knowledge of fertility preservations options, and of locally and nationally available resources.
Patients and families have very personal perceptions of breast cancer and treatments that are influenced and developed over time as a result of many factors. Comprehensive psychosocial assessment of the patient must move beyond traditional considerations and include intimacy, sexuality, spirituality and a realistic appraisal of the capabilities and limitations of each family. Healthcare professionals practice in an extremely demanding environment. Although prepared to function well in the context of multiple technical and instrumental tasks, staff are seldom prepared for the psychologic and emotional demands of patients and families and of their own idiosyncratic response. In general, psychosocial interventions can: increase knowledge and assist with decision-making; help minimize distress; improve coping skills; aid in the adaptation to cancer survivorship; assist with end-of-life issues; help women process their feelings and experiences to maximize positive gains and reprioritization of life goals.
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