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Kufe DW, Pollock RE, Weichselbaum RR, et al., editors. Holland-Frei Cancer Medicine. 6th edition. Hamilton (ON): BC Decker; 2003.

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Holland-Frei Cancer Medicine. 6th edition.

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Psychosocial Problems

, MD and , PhD.

Psychosocial problems of patients change across the continuum of cancer. They can be considered in four broad categories: (1) those in patients receiving active treatment with cure as a goal, (2) psychosocial problems of patients receiving palliative care, with the treatment of cancer aimed at control or comfort, (3) problems of patients who have completed active treatment and who are considered survivors, and (4) asymptomatic, healthy individuals who have a known enhanced risk of cancer by family history, genetic testing, positive tumor markers, or recognized carcinogenic exposure.

Adaptation to Active Treatment

In patients undergoing treatment aimed at cure, the goal of psychosocial intervention is to support their ability to cope with the stresses of treatment; to reduce their distress by helping them to tolerate the short-term loss for the long-term gain, and to assist in symptom management (eg, anxiety, nausea and vomiting, pain).32–37 Some sites of cancer, particularly pancreatic, have a less likely curative outcome and are associated with more distressing physical symptoms and depression.38 The known poor prognosis adds to the psychological burden.

One study revealed that oncologists were able to perceive patients' physical symptoms correctly, but they underestimated levels of anxiety and depression.31 Hospitalized patients have higher frequency of both psychosocial problems and psychiatric disorders due to level of illness.39,40 Ambulatory patients who have been screened in the waiting room for level of distress show that between a quarter and almost half (depending on tumor type and prognosis) have significant distress (mixed anxiety and depressive symptoms) and should be referred for evaluation by a mental health professional.41,42

The goal of cure encourages most individuals to tolerate the temporary discomfort and side effects of surgery, chemotherapy, and radiation, and to adapt to the permanent losses or organ-preserving procedures that may be necessary to achieve successful antineoplastic treatment.43 Control of anxiety, depression, delirium, and nausea and vomiting, and encouraging adherence to treatment are areas in which symptom control and psychological support are helpful. McQuellon and colleagues have used an orientation program for new patients that gave them added information about what to expect. Anxiety and depression symptoms were reduced as compared with the usual care group.44 Counseling, support groups, cognitive-behavioral interventions, and psychopharmacologic agents all are useful to control distress. A broad range of psychosocial interventions have emerged.45 (See section on Psychiatric and Psychosocial Interventions.)

Adaptation to Palliative Care

The transition from a curative approach to a palliative one is extremely difficult for the patient, the family, and the physician who has worked with the patient through months of arduous treatment. This transition constitutes a crisis that carries greater anguish than that experienced at the time of initial diagnosis. The combination of physical symptoms, psychological distress, and the existential crisis constitutes the “suffering” associated with advanced cancer.46 Patients have a period of high distress on learning that the goal has shifted from cure to control of their cancer. However, most adapt remarkably well to the altered goal. Today, many people view cancer as a chronic disease at this stage, particularly those living with advanced prostate and breast cancers. They hold out hope of maintaining treatment until a new therapy becomes available. It is only when treatments and investigational therapies begin to fail that end-of-life issues more clearly emerge.

Assurance of the physician's commitment to continued care and symptom control becomes more important. Appointing a health proxy and discussing wishes about resuscitation and life-sustaining measures are best dealt with early rather than late. Decisions about where continuing care will be given must be discussed, as well as assessing whether end-of-life care can be managed at home. When it is possible, both patient and family benefit psychologically from it.47–49 Considerable information exists today about symptom control in advanced stages of illness, with better control of pain, anorexia, nausea, constipation, dyspnea, weakness, cachexia, and suffering (distress).50–53 Portenoy and colleagues studied prevalence of symptoms in patients with advanced cancer and found fatigue, weakness, pain, and emotional distress present in more than two-thirds of patients.43 Palliative care in children is also better defined.54,55

There are growing numbers of controlled trials of medication, and behavioral and psychological interventions to treat the psychiatric disorders that are common in advanced stages of illness: anxiety, depression, and confusion (delirium).48,50,56,57 In addition, psychotherapeutic approaches have been devised for patients facing the existential crisis of the end of life. Chochinov has described “dignity-conserving” psychotherapy to help the person feel valued and esteemed: “It targets maintenance of dignity as a therapeutic objective and as a principle of bedside care for patients nearing death.”.57 The Academy of Psychosomatic Medicine has written guidelines on the psychiatric aspects of end-of-life care.58 Other studies have identified the role of the psychiatrist in managing psychiatric disorders associated with terminal cancer.46,59 Special attention to depression and requests for physician-assisted suicide require careful consideration.60–65 Comfort care must focus on control of the physical, psychological, and spiritual aspects as existential issues grow in importance.

Adaptation to Being a Survivor

One growing and increasingly vocal group of patients consists of those who have completed active treatment and, on returning to their lives and routine, become advocates for themselves and others. The National Coalition of Cancer Survivorship (NCCS) is an advocacy group representing the nine million survivors in the Unites States gaining a voice in health policy and care. It publishes practical and sensitive “how-to” books for survivors. Patient advocates are now members of committees in the National Cancer Institute's policy bodies and in cooperative groups. Common concerns of survivors are fears of recurrence, worry about delayed physical effects, risk of second cancers, and sterility.66 Frequent psychosocial sequelae are presented in Table 70-6.

Table 70-6. Psychosocial Sequelae in Cancer Survivors.

Table 70-6

Psychosocial Sequelae in Cancer Survivors.

Neuropsychological tests have revealed cognitive changes after radiation and after chemotherapy. The negative dose-related effects of cranial radiation in children result in underachievement in school and significant neuro-psychological impairment.67 More recent studies suggest that even adjuvant chemotherapy for breast cancer produces subtle cognitive deficits that are apparent months and even years after treatment.68,69 These cognitive changes, long identified by patients as “chemo brain,” are the subject of greater investigation currently. A study by Ahles and colleagues in the Cancer and Leukemia Group B (CALGB) showed that prophylactic cranial radiation in small-cell lung cancer patients resulted in cognitive deficits that were not related to depression.70

Studies of young adult survivors of Hodgkin's disease, acute leukemia, or testicular cancer reveal several psychosocial characteristics that apply to survivors across tumor sites (see Table 70-6).71–73 Most psychologically healthy individuals emerge from cancer treatment without serious psychological sequelae or significant psychiatric disorders. There is a subset of survivors, around 15 to 20%, however, who do show significant problems, including PTSD symptoms. They occur more in patients with more physical sequelae and fewer social supports.66

Many of this subset of survivors report persistent fears of recurrence and death (Damocles syndrome), a greater sense of uncertainty about the future, a greater sense of vulnerability, and lower self-esteem (see Table 70-6). Minor physical symptoms may be misinterpreted as initial signs of recurrent cancer. Anxiety and even panic occur before follow-up visits and scans. Anxiety diminishes over time, especially after the first 5 years associated with maximal risk of recurrence, but it continues to be exacerbated at times of periodic medical examinations or appearance of minor symptoms. Gonadal toxicity may result in infertility and, in women, symptoms of premature menopause and sexual dysfunction. Even when no treatment-related gonadal toxicity is present, there often is lower sexual desire and poorer sexual satisfaction and performance for both men and women.74–77

Career goals suffer from difficulty in changing jobs and pursuing a chosen career, based in part on realistic concerns about health insurance and prejudice about having had cancer. Many survivors report subtle forms of discrimination.72 Chemotherapy results in long-lasting, conditioned, Pavlovian responses to reminders of the treatment situation, where nausea and vomiting occurred with cyclic chemotherapy.32,78 Cella and colleagues found that smells, tastes, and sights that were reminders of treatment, even as long as 11 years later, resulted in a sudden sense of unexplained anxiety and nausea (but rarely vomiting) that only on reflection was recognized as a reminder of prior treatment.79

A more generalized type of anxiety seen after aggressive cancer treatment, particularly bone marrow or stem cell transplant, is PTSD. Symptoms of hypervigilance, flashbacks, anxiety, depressive symptoms, poor self-esteem, and poor concentration are reported.22,80–82 Studies suggest that about 10 to 15% of survivors of bone marrow transplants have PTSD, but another 10 to 15% have some of the symptoms of PTSD without reaching full criteria for the diagnosis. PTSD has also been diagnosed in a high percentage of mothers whose children have gone through cancer treatment.83 Kornblith and colleagues in the CALGB have unpublished data indicating that women who are 20-year breast cancer survivors have low levels of anxiety about cancer but that a significant subgroup of about 20% had PTSD symptoms related to memories of treatment. Cognitive-behavioral therapy, with or without medication, is the current treatment.

Adaptation to Increased Genetic Risk of Cancer

Healthy individuals increasingly recognize that they are at risk of a particular type of cancer by virtue of cancers in others in their family.84,85 They are informed today about the increased risk of breast, colon, ovarian, and prostate cancer among first-degree relatives as well as of melanoma and endocrine tumors (MENS I and II).86 The psychological impact of this knowledge results in a new and increasing number of individuals who are physically healthy but who are fearful of disease, sometimes to pathological levels. They constitute the “worried well,” who must deal with knowledge of enhanced risk despite present good health. Some perceive themselves as “walking time bombs.” In a study by Kash and colleagues of women with two or more first-degree relatives with breast cancer, those most anxious were least able to carry out regular breast self-examination or have mammograms despite the importance of surveillance because of high risk.87 Studies have been conducted to explore how to counsel those at risk.88,89 People usually overestimate their actual risk, and genetic counseling is helpful to give them accurate information.

Most studies have explored psychological responses to breast and ovarian cancer risk.84,85,90–95) and colon cancer risk.86,89,96 Requests for genetic counseling have increased, but requests for actual genetic testing are more carefully considered by most individuals because of potential discrimination in the workplace, and in health and life insurance are recognized from breach of privacy regarding the information. Concerns about family members' attitudes also plays a role. In addition, there are many as yet unidentified gene mutations, so results are often far from definitive. The potential harm to minors is particularly worrisome. Pretesting counseling must take into account the impact on psychologically vulnerable individuals. The concern about severe psychological sequelae has not been borne out by experience thus far, however, and most individuals who learn their genetic results tolerate the information well, even when the clinical significance of results is ambiguous. More studies are needed of the impact on family members who indirectly learn of their own risk. The Institute of Medicine and the Human Genome Project have led in examining the social policy issues and have suggested the need for oversight of laboratories, assurances of confidentiality, and guidelines for counseling. Major education of the public and professionals is also needed.

By agreement with the publisher, this book is accessible by the search feature, but cannot be browsed.

Copyright © 2003, BC Decker Inc.
Bookshelf ID: NBK13862


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