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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.09
Cancer
BARBARA L. ANDERSEN and DEANNA M. GOLDEN-KREUTZ
Ohio State University, Columbus, OH, USA

8.09.1 INTRODUCTION 217


8.09.2 MAGNITUDE OF THE PROBLEM INCIDENCE, DEATH RATES, AND GENDER DIFFERENCES 218
8.09.3 ETIOLOGY, RISK FACTORS, AND PREVENTION 218
8.09.4 PSYCHOLOGICAL, SOCIAL, AND BEHAVIORAL IMPACT OF CANCER 220
8.09.4.1 Symptom Appearance 220
8.09.4.2 Diagnosis 221
8.09.4.3 Treatment 222
8.09.4.3.1 Surgery 223
8.09.4.3.2 Radiotherapy 223
8.09.4.3.3 Chemotherapy 223
8.09.4.3.4 Bone marrow transplantation 224
8.09.4.3.5 Treatment side effects 225
8.09.4.3.6 Choosing cancer treatments 226
8.09.4.4 Recovery and Long-term Survival 227
8.09.4.5 Recurrence and Death 229
8.09.5 CONCLUSION 231
8.09.6 REFERENCES 232

8.09.1 INTRODUCTION 1990±1993 ranged from 394 in Hungary to


139 in Albania; the rate for the USA is 276
The cost of human lives to cancer (defined as (average: Parker et al., 1997). In short, cancer is
any malignant tumor; Rothenberg, 1992), is a significant medical problem that affects the
overwhelming. In many countries cancer is the health status of millions of people worldwide.
second leading cause of death, only outnum- Research on the psychological, social, and
bered by heart disease. In the USA alone, over behavioral aspects of oncology began in the
3500 people are diagnosed with cancer and early 1950s; however, our knowledge base has
another 1500 people die from cancer-related significantly expanded since the 1970s. In
deaths per day (Parker, Tong, Bolden, & Wingo, particular, research has clarified relationships
1997). While much of the increase in cancer between psychological responses (e.g., person-
incidence and mortality over the years appears ality, mood, coping style, relationships), social
related to advances in early detection as well as factors (e.g., presence/absence of partner,
the general aging of the population (age is a risk degree of social support), and behavioral
factor; Garfinkel, 1994), Cunningham (1997) variables (e.g., compliance with treatment,
has noted cancer death rates may now be diet, exercise). More recent research has
showing a downward trend in the USA. There incorporated biologic systems (e.g., immune
is, however, variability across countries. For and endocrine), examining the interaction of
example, age-adjusted death rates per 100 000 psychological, social, and behavioral variables
population across sites and gender for and their relationship to disease course (see

217
218 Cancer

Fawzy et al., 1993, for an example; see appears to depend on genetic or environmental
Andersen, Kiecolt-Glaser, & Glaser, 1994, factors, with exposure to carcinogens often
for a discussion). playing a significant role in many cancers
This chapter includes an overview of the (Rugo, 1993). In fact, cancer incidence and
central findings on the psychological, social, concomitant premature death have been linked
and behavioral impact of cancer. By way of to behavioral habits that increase exposure. In
introduction, we begin by addressing the the United States, for example, the National
magnitude of the cancer problem. Data on Cancer Institute set a goal of a 50% reduction in
cancer incidence, death rates, and gender cancer mortality by the year 2000 through
differences are highlighted. Where data from prevention and control efforts focused, in large
the USA are used, it is noted that they represent part, on lifestyle (Greenwald & Cullen, 1985).
the same general trends found in other Primary prevention tactics have attempted
industrialized, Western countries. Second, we to reduce the probability of cancer onset by
briefly discuss etiologic and risk factors and the decreasing exposure to risk factors. For women
role of prevention. The largest section of the and men, unhealthy habits have been a beha-
chapter organizes research findings by disease vioral research target, and smoking has been
relevant time points, from symptom discovery emphasized, as it is related to 30% of all cancer
to recovery or death. Where appropriate, deaths (Rugo, 1993). Cigarette smoking is
specific intervention studies will be detailed. directly linked to lung cancer, one of the leading
Information about cancer's impact on a causes of death for men and women, and is
patient's social network (spouse, family, etc.) implicated in cancers of the larynx, head and
is also included. We conclude with a discussion neck, esophagus, bladder, kidney, pancreas, and
of psychological interventions and techniques stomach.
that appear to be effective in promoting Other lifestyle behaviors that have been
improved quality of life and coping in cancer linked to greater risk are dietary patterns and
patients. sun exposure (e.g., ultraviolet light). Diet
research has suggested that diets high in fat
and low in fiber may contribute to increased
8.09.2 MAGNITUDE OF THE PROBLEM risk for particular cancers (e.g., breast and
INCIDENCE, DEATH RATES, AND colon, respectively). Recommendations for
GENDER DIFFERENCES modificationÐreductions in fat intake and
increases in complex carbohydrates and fiberÐ
Cancers vary in their prevalence and mortal-
and weight reduction per se have been
ity. Tables 1 and 2 display data from the USA on
suggested (Ashley, 1993; Wynder & Cohen,
the incidence and death rates by specific sites
1993). In breast cancer prevention, for exam-
and genders. These data indicate, for example,
ple, interventions have been developed for at-
that the most common diagnosis for women is
risk women to reduce weight and fat intake and
breast cancer and for men, prostate cancer, but
to increase physical activity (Heber, Bagga,
that lung cancer is the number one killer for
Ashley, & Elashloff, 1993). Parallel interven-
both (Parker et al., 1997). Similarly, Tables 3
tions focused on increasing fiber in the diet
and 4 provide death rate data from selected
may be important for decreasing one's risk for
countries (Parker et al., 1997). These data
gastrointestinal cancers. Concerning sun ex-
illustrate the geographic, nationality, and sex
posure, the number of people diagnosed with
differences that exist (e.g., lung cancer death
skin cancers has been steadily increasing over
rates of 81.6 per 100 000 for Hungarian men, but
recent years. In fact, close to 1 million
a rate of 5.2 for French women). In examining
diagnoses of basal and squamous cell skin
the death rates worldwide, the top killers of
cancers are expected in 1997 and this figure
women include breast, colon and rectum, lung,
does not include malignant melanoma (Parker
and stomach cancers. For men, lung, stomach,
et al., 1997). It has been recommended that
colon and rectum, and prostate cancers are the
time spent exposed to the sun, especially during
common killers worldwide.
the hottest part of the day, be decreased and
the use of lotions that block exposure to
8.09.3 ETIOLOGY, RISK FACTORS, AND harmful ultraviolet rays be used. Another risk
PREVENTION factor involves exposure to certain viruses. The
human papilloma virus has been linked to
The specific events that turn a normal cell into gynecologic cancers and the human immuno-
a cancerous cell are still unknown (Rugo, 1993). deficiency virus has been associated to non-
However, we do know that it takes generations Hodgkin's lymphoma and Kaposi's sarcoma.
of mutations for cells to become cancerous. The Prevention efforts have focused on safer sexual
development of cancer within an individual practices with barrier methods (e.g., diaphram,
Etiology, Risk Factors, and Prevention 219

Table 1 1997 estimates of cancer incidence by site and gender for the five leading sites.

Male (total estimated 785 800) Female (total estimated 506 000)

Site Number (%) Site Number (%)

Prostate 334 500 (43) Breast 180 200 (30)


Lung 98 300 (13) Colon/rectum 79 800 (13)
Colon/rectum 48 100 (8) Lung 50 900 (11)
Bladder 39 500 (5) Uterus 34 900 (6)
Lymphoma 30 300 (4) Ovary 26 800 (4)

Adapted from Cancer Statistics Ð 1997, American Cancer Society.

Table 2 1997 estimates of cancer mortality by site and gender for the five leading sites.

Male (total estimated 294 100) Female (total estimated 265 900)

Site Number (%) Site Number (%)

Lung 94 400 (32) Lung 66 000 (25)


Prostate 41 800 (14) Breast 43 900 (17)
Colon/rectum 27 000 (9) Colon/rectum 27 900 (10)
Pancreas 13 500 (5) Pancrease 14 600 (5)
Lymphoma 12 400 (4) Ovary 14 200 (5)

Adapted from Cancer Statistics Ð 1997, American Cancer Society.

Table 3 Age-adjusted death rates in adult males per 100 000 for selected countries and
disease sites for 1990±1993.

Country All sites Colon/rectum Lung Prostate Stomach

USA 165.3 (27) 16.5 57.1 17.5 5.0


Hungary 258.7 (1) 38.0 81.6 15.8 23.4
Poland 204.2 (8) 15.4 71.3 9.9 21.6
Italy 189.2 (15) 15.3 57.0 11.6 16.9
New Zealand 170.6 (21) 26.4 42.6 19.0 9.0
Finland 149.9 (31) 12.4 46.1 18.3 11.5
Israel 116.9 (43) 15.3 25.7 9.2 8.7
Mexico 81.6 (48) 3.3 15.9 10.6 9.9

Figures in parentheses are order of rank based on data from 48 countries during the years 1990±1993. Adapted from
Parker et al. (1997).

Table 4 Age-adjusted death rates in Adult females per 100 000 for selected countries and
disease sites for 1990±1993.

Country All sites Colon/rectum Lung Prostate Stomach

USA 111.1 (8) 22.0 11.2 25.6 2.3


Denmark 138.7 (1) 27.2 17.2 24.8 3.9
Austria 105.6 (16) 21.8 13.7 9.3 7.8
Russian Fed. 99.9 (21) 14.9 12.3 7.3 16.9
Argentina 96.4 (27) 21.3 9.2 6.0 4.8
France 86.5 (36) 19.7 10.1 5.2 3.3
Japan 75.2 (43) 6.6 9.8 8.1 14.2
Albania 42.7 (48) 5.2 2.2 5.0 6.3

Figures in parentheses are order of rank based on data from 48 countries during the years 1990±1993. Adapted from
Parker et al. (1997).
220 Cancer

use of condoms). Additionally, a family history Coates et al., 1992; Waters, Nichols, Wheeler,
of cancer may double a person's risk for that Fraser, & Hayes, 1983), being diagnosed with a
same cancer. For example, in breast cancer, the medical condition (Marshall, Gregorio, &
greater the number of affected relatives and the Walsh, 1982), or beginning treatment for the
younger these relatives were at the time of condition (e.g., Howson, 1950). According to
diagnosis, the higher a woman's risk. Women this view, all individuals, and even some
with multiple first-degree relatives (e.g., physicians, would be ªdelayers.º Still another
mother, sisters) with premenopausal breast strategy has been to designate some delay as
cancer are at highest risk. In such families, more ªreasonableº than others (e.g., one month
breast cancer appears to be transmitted as a from symptom appearance to appearance
gene, and the risk of breast cancer may before a physician; see early work in cancer
approach 80%. New evidence is also emerging by Pack & Gallo, 1938).
on a gene associated with the development of Andersen and Cacioppo (1995) have con-
prostate cancer. ceived of delay as comprising a series of stages
Secondary prevention efforts have been (e.g., appraisal, illness, behavioral, scheduling)
defined as those that identify the disease at each governed by a conceptually distinct set of
the earliest of stages (e.g., when it is preinvasive decisional and appraisal processes. Appraisal
or localized and asymptomatic) so that effective delay, delay surrounding symptom interpreta-
treatment can be administered sooner and tion, has been found to account for most of the
mortality reduced. The chances of successful delay in seeking a cancer diagnosis (see
early cancer detection and treatment depend Andersen & Cacioppo, 1995, for a model of
upon the clinical characteristics of the disease delay). For example, the appraisal interval was
and the screening strategy, and it is unlikely that approximately 80% of the total delay for
secondary prevention can proceed effectively women with gynecologic cancer, whereas for
unless certain conditions for both are met. women with breast symptoms, a site that has a
Behavioral scientists have focused mainly on narrower range of symptom diversity, the
the early detection of breast cancer, especially interval accounted for 60% of the delay.
with mammography (the most reliable means of It is likely that there are several reasons for
early detection). Investigators (e.g., Rimer, the finding of appraisal processes accounting for
1992) have considered the psychological, beha- the bulk of the delay time. First, the develop-
vioral, sociodemographic, and healthcare fac- ment of malignancy and the appearance of
tors that appear to be related to women's usage cancer symptoms are protracted, and a complex
of mammography. Older women, poorer wo- and changing symptom picture can be typical,
men, and those with weak linkages to the unlike the presentation of many other medical
healthcare system, for example, are less frequent problems (e.g., myocardial infarction; see
users of mammography. Factors such as these Matthews, Siegel, Kuller, Thompson, & Varat,
result in deadly consequences for women, as 1983). Symptoms can also vary with the site and
poorer or older women without a history of extent of the disease. For example, ovarian
mammography are often diagnosed with more cancer has varied presentationsÐpelvic cramp-
advanced disease. Thus, to the extent that ing, low back pain, pain or bleeding with
behavioral scientists can affect women's accep- intercourse, urinary frequency irregularities.
tance and utilization of the technique, survival Moreover, as cancers progress, they can involve
may be directly improved. Early detection other bodily systems (e.g., gastrointestinal,
efforts have also focused on prostate, skin, lymphatic) and the symptom picture tends to
and colorectal cancers with behavioral scientists change from specific or localized complaints
finally beginning to study prostate cancer. (e.g., vaginal discharge/bleeding) to diffuse ones
(e.g., loss of appetite, nausea, flu symptoms).
8.09.4 PSYCHOLOGICAL, SOCIAL, AND Finally, cancer is a life-threatening disease but a
BEHAVIORAL IMPACT OF low probability disease for many, and thus the
CANCER appraisal process may lengthen.
Briefly considering the other stages, illness
8.09.4.1 Symptom Appearance delay is defined as the number of days elapsing
from the time an individual concludes he or she
In the study of delay in seeking treatment for is ill to the day he or she decides to seek medical
medical conditions, several definitions of delay help. At this time individuals must decide, for
have been used, but an oft-chosen operationa- example, whether to seek assistance from others
lization is the number of days from the detection (e.g., physician, others with a similar condition)
of the first symptom to an end point. This latter or to self-treat the illness. After this, the delay is
variable is less consistently chosen, but has spent in making two remaining decisions. One is
included seeing a physician for symptoms (e.g., the delay between the decision to seek medical
Psychological, Social, and Behavioral Impact of Cancer 221

attention and the person acting on this decision physicians. Still other cross-cultural research
by making an appointment (behavioral delay). has indicated that the majority of patients want
The other is the time that elapses between the to be told their diagnosis truthfully (e.g., Japan,
person making an appointment and his or her Mizushima et al., 1990; UK, Sell et al., 1993).
first receipt of medical attention (scheduling Further, the manner in which the information is
delay). Economic factors such as affordability, disclosed is important. Physicians who com-
social factors such as family influence, and municate hope have patients who are more
cognitive factors such as the extent to which the hopeful, more favorable towards their cancer
decision to seek medical help is based on issue- diagnosis, and who report more favorable
relevant thinking are more likely to modulate overall emotional adjustment (Sardell & Trier-
the delay time between a decision to seek and an weiler, 1993). This points to the need of
action to receive medical care (behavioral physicians and other health professionals to
delay). In contrast, both patient characteristics learn more effective and thorough means of
(such as the manner in which the person communicating information (e.g., diagnosis,
describes his or her concerns and symptoms) treatment, prognosis) to their patients (Sell
and medical environment characteristics (such et al., Woodard & Pamies, 1992).
as a physician's appointment backlog), which Empirical reports clarify the specific
are not under an individual's control, may emotionsÐsadness (depression), fear (anxiety),
modulate the delay incurred when scheduling an and angerÐthat characterize this period. It is
appointment. Therefore, shortening delay to not surprising that depression is the most
seeking a diagnosis once symptom/sign aware- common affective problem. Survey estimates
ness has occurred (tertiary prevention) would for major depression are of the order of 5±6%
improve survival, as early detection is linked to (Derogatis et al., 1983; Lansky et al., 1985),
improved survival rates for many sites (e.g., similar to that of the general population (Locke
cervix, breast, colon, prostate). & Regier, 1985). However, when major depres-
sion and depressed mood are considered,
8.09.4.2 Diagnosis prevalence rates are higher (e.g., 16% in
Derogatis et al., 1983; 25% in a review by
An early clinical study suggested that the Massie & Holland, 1990). Lower rates have been
diagnosis of cancer produces an ªexistential found when specified diagnostic criteria are used
plight,º meaning that the news brings shock, and/or the patients assessed are ambulatory
disbelief, and emotional turmoil (Weisman & with good physical functioning (Levin, Jones, &
Worden, 1976). Today, we know that indivi- Sack, 1993; Massie & Holland, 1990). In
duals even become alarmed at the time of general, depression is more common for those
medical screening, long before a cancer diag- patients in active treatment rather than those on
nosis is suggested (Wardle & Pope, 1992). follow-up, receiving palliative rather than
Perhaps because of these natural, difficult curative treatment, with pain or other disturbing
reactions, over the years there has been some symptoms rather than not, and/or with a history
variability in whether or not patients were told of affective disorder or alcoholism.
that their diagnosis was cancer. Study of the psychological responses that
In the USA as well as most Western countries, characterize the response to cancer diagnosis
patients (including children) are now told that may shed light on the reactions of individuals to
their diagnosis is cancer, since this is regarded as other life-threatening disease or treatment
the moral, ethical, and legal procedure to follow circumstances. In fact, when moods (Cassileth
(Woodard & Pamies, 1992). Support of this et al., 1985; Westbrook & Viney, 1982) or
policy has documented the beneficial effects of coping strategies (Felton, Revenson, & Hin-
coping successfully with an extreme stressor richsen, 1984) have been compared across
such as cancer (Taylor, 1983), and follow-up disease groups (e.g., rheumatoid arthritis,
studies of childhood leukemia survivors, for diabetes, cancer, renal disease, hypertension),
example, have pointed toward more favorable few differences have been found, suggesting that
long-term adjustment for children when they cancer patients may respond similarly to those
learn of their diagnosis early, whether directly, with other life-threatening and/or chronic
accidentally, or through their own efforts, in illnesses. On the other hand, patients in these
comparison with children who learn late early studies were heterogeneous on many
(Slavin, O'Malley, Koocher, & Foster, 1982). disease variables (e.g., time since diagnosis,
Likewise, Mosconi, Meyerowitz, Liberati and active treatment vs. follow-up status, and/or
Liberati (1991) found that of 1171 Italian breast disability) that are important predictors of
cancer patients, those who were told their differential responses among cancer patients.
diagnosis was cancer were more satisfied with Differences in the patterns of emotional
the information they had received from their distress may exist. For example, it has been
222 Cancer

suggested that breast and gynecological cancer status and coping are associated with changes
patients are significantly less depressed, an- (upregulation) in immune responses.
xious, and hostile (angry) possibly due to Improvements such as these in mood and
perceptions of their illness as less serious than coping are all the more impressive because they
women with other forms of cancer (e.g., lung, are often achieved with brief, cost-effective
gastrointestinal, head and neck; Sneed, Edlund, interventions (e.g., 10 therapy hours with
& Dias, 1992). Similarly, a comparison of delivery in a group format; Andersen, 1992).
patients with limited vs. extensive lung cancer Studies that have provided follow-up data also
and equivalent levels of physical impairment suggest some consolidation of intervention
found that significantly greater mood distur- effects across time (upwards of six months
bance was reported by the patients with post-treatment), with lowered emotional dis-
extensive disease and poorer prognoses (Cella tress, enhanced coping, and/or improved sexual
et al., 1987). Related findings have emerged for functioning (e.g., Capone, Good, Westie, &
individuals who perceive their illness as severe Jacobson, 1980; Christensen, 1983).
(Marks, Richardson, Graham, & Levine, 1986)
or who have a sense of pessimism about their life 8.09.4.3 Treatment
(Carver et al., 1994). In fact, Carver et al. found
that general pessimism (vs. optimism) at A certain component of the emotional
diagnosis predicted poorer well-being (mood distress occurring at diagnosis is due to the
and life satisfaction) at one day before surgery anticipation of treatment. Current therapies
as well as at 3, 6, and 12 month follow-ups. In include surgery, radiotherapy and radioactive
addition, when patients are followed long- substances, chemotherapy, hormonal therapy,
itudinally, the emotional responses at recur- immunotherapy, and combination regimens
rence are characterized by significantly higher and procedures (e.g., bone marrow transplanta-
levels of depression and anger than had been tion, intraoperative radiotherapy). Some pa-
reported at the time of initial diagnosis tients also undergo difficult diagnostic or
(Andersen, Anderson, & deProsse, 1989b). treatment monitoring procedures (e.g., bone
It is encouraging that the clinical problem of marrow aspirations), and all treatments are
diagnostic and treatment-related distress can be preceded or followed by physical examinations,
alleviated through psychological interventions tumor surveys, and/or laboratory studies. Thus,
(see Andersen, 1992, for a review). A compre- the diagnostic process of selecting the appro-
hensive example of such an effort is the study of priate therapy and subsequent treatment events
Fawzy, Cousins et al. (1990) and Fawzy, can represent multiple medical stressors. As will
Kemeny et al. (1990). They attempted to reduce be discussed below, the data are consistent in
distress and enhance immune functioning in their portrayal of more distress (particularly
newly diagnosed melanoma patients via a fear and anxiety), slower rates of emotional
structured group support intervention which recovery, and, perhaps, higher rates of other
included health education, illness-related pro- behavioral difficulties (e.g., food aversions,
blem solving, relaxation training, and group continued fatigue and malaise) in cancer
support. The format was weekly group treat- patients compared with healthy individuals
ment for six sessions. Eighty patients with early undergoing noncancer-related medical treat-
stage melanoma participated and were rando- ment. The emotional crisis that characterizes the
mized to intervention or control conditions. The diagnostic period lessens as time passes, and
post-treatment analyses indicated that the longitudinal studies find that as treatments end
intervention subjects reported significantly and recovery begins there is an emotional
more vigor, but there were no other emotional rebound (e.g., Andersen et al., 1989b; Bloom,
distress differences. By six months, emotional 1987; Devlen, Maguire, Phillips, Crowther, &
distress had improved for the intervention Chambers, 1987; Edgar, Rosberger, & Nowlis,
subjects with significantly lower depression, 1992). This lowering of emotional distress over
confusion, and fatigue, and higher vigor. Coping time is found even for patients undergoing
data indicated that the intervention subjects radical treatment requiring major adjustments
reported significantly more use of active- (e.g., radical neck dissection with laryngectomy;
behavioral strategies by the treatment's end, a Manuel, Roth, Keefe, & Brantley, 1987). As
pattern that continued with the addition of cancer treatments (surgery, radiation, etc.) vary
active-cognitive strategies by six months. Re- considerably in their intent, morbidity, and
garding the immunologic findings, at six months mortality, we will review each of the major
there was a significant difference in groups with modalities separately and also discuss three
better immunologic status for the intervention clinical problemsÐcompliance, appetite and
subjects. These data are impressive in that they weight loss, and fatigueÐthat are common
suggest that improvements in psychological across therapies.
Psychological, Social, and Behavioral Impact of Cancer 223

8.09.4.3.1 Surgery length of stay, behavioral recovery, and


physiological indices.
There have been few investigations of cancer
surgery, but there are numerous descriptive
and intervention studies of the reactions of 8.09.4.3.2 Radiotherapy
healthy individuals undergoing surgery for At least 350 000 individuals in the USA
benign conditions. The latter studies are receive radiation therapy each year. Clinical
consistent in their portrayal of (i) high levels descriptions have noted patientsº fears (e.g.,
of self-reported preoperative anxiety predictive being burned, hair loss, sterility); while such
of higher postoperative anxiety, and (ii) higher outcomes do occur, they are site- and dosage-
postoperative anxiety predictive of longer dependent. To understand radiation fears, the
recovery (e.g., decreased time out of bed, surgical anxiety studies already described above
increased pain reports). What may distinguish have been used as a research paradigm. Here,
cancer surgery patients are higher overall levels again, anxiety (and sleeplessness) can often
of distress and slower rates of emotional cause more overall distress than physical
recovery. For example, Gottesman and Lewis symptoms (Munro, Biruls, Griffin, Thomas,
(1982) found greater and more lasting feelings & Vallis, 1989), and are predictors of treatment
of crisis and helplessness among cancer response (Wallace, Priestman, Dunn, & Priest-
patients in comparison to benign surgery man, 1993). If interventions to reduce distress
patients for as long as two months following (especially anticipatory anxiety) are not con-
discharge. ducted, heightened post-treatment anxiety is
Considering these data, findings on the also found (Andersen, Karlsson, Anderson, &
interaction patterns of physicians and cancer Tewfik, 1984; Andersen & Tewfik, 1985) and
patients on morning surgical rounds is disturb- might be maintained for as long as three months
ing. Blanchard, Ruckdeschel, Labrecque, post-therapy, particularly when treatment
Frisch, and Blanchard (1987) found attending symptoms linger (e.g., diarrhea, fatigue; King,
physicians on a cancer unit less likely to be Nail, Kreamer, Strohl, & Johnson, 1985). When
supportive and to address patientsº needs than acute side effects resolve (usually by 12 months
physicians treating general medical patients. post-treatment), there appears to be no higher
The heavier volume and more seriously ill incidence of emotional difficulties for radio-
patients common to cancer units might be therapy patients than for cancer surgery
sources for this unfortunate relationship. Re- patients (Hughson, Cooper, McArdle, & Smith,
lated findings indicate that oncology nurses 1987).
might find their job significantly more stressful
than other taxing assignments (e.g., cardiac,
intensive care, or operating room; Stewart, 8.09.4.3.3 Chemotherapy
Meyerowitz, Jackson, Yarkin, & Harvey, 1982), Of all the treatment modalities, the greatest
and may limit their communication with cancer progress has been in the understanding of
patients, especially those experiencing a recur- psychological reactions to chemotherapy and
rence (Wilkinson, 1991). the related toxicities, particularly nausea and
As noted above, there has been considerable vomiting. Over a decade of research has
research on the psychological and behavioral revealed that approximately 60% of cancer
aspects of response to surgery, and many patients will develop nausea and another 50%
effective interventions have been tested. Com- will develop vomiting in response to cytotoxic
ponents of these interventions include proce- treatments (Morrow & Hickok, 1993). Psycho-
dural information (e.g., how the surgery is to logical research has focused on eliminating or
be performed as well as pre- and postoperative reducing these problems through hypnosis (e.g.,
events from the perspective of the patient), Redd, Andersen, & Minagawa, 1982), progres-
sensory information on the actual physical sive muscle relaxation with guided imagery
sensations of the surgery or preparatory events, (e.g., Burish & Jenkins, 1992; Carey & Burish,
behavioral coping instructions, cognitive cop- 1988), systematic desensitization (e.g., Morrow
ing interventions, relaxation, hypnosis, and et al., 1992), cognitive distraction (e.g., Greene,
emotion-focused interventions. In a meta- Seime, & Smith, 1991; Vasterling, Jenkins,
analysis of this literature, Johnston and Vogele Tope, & Burish, 1993), and biofeedback (e.g.,
(1993) reported that procedural information Burish & Jenkins).
and behavioral instructions show consistent The routine use of antiemetic and antianxiety
and strong positive effects on postoperative drugs and the development of newer chemother-
recovery. Effects are significant for a broad apeutic agents has resulted in an overall lower
band of measures, including ratings of negative incidence and clinical severity of nausea and
affect and pain, amount of pain medication, vomiting. However, the above gains may be
224 Cancer

somewhat offset by the more current medical disease in the near future (Winer & Sutton,
practice of using dose-intensive regimens as well 1994). At present it is estimated that there are
as treating disease types or stages not previously over 5000 transplants performed each year
given adjuvant chemotherapy (Andrykowski, worldwide (Alby, 1991).
1993). It is clear that pretreatment with BMT is a complex and potentially fatal
medications can control nausea and thus reduce treatment. The target of the treatment, the bone
vomiting, but pretreatment can also reduce the marrow, is destroyed with high dose chemother-
likelihood of anticipatory reactions. Anticipa- apy, with or without whole body radiation
tory reactions are believed to be conditioned afterwards. The bone marrow to be trans-
responses resulting from the learning process of planted comes from a donor (allogenic BMT) or
classical conditioning in which side effects (e.g. from the patient (autologous BMT) after it has
nausea and vomiting) become associated with been removed and treated. Although allogenic
previously neutral stimuli (driving to the BMT has a role, its expansion is limited by the
hospital, sitting in the waiting room, etc.). Once need for a suitable donor and the subsequent
anticipatory nausea and vomiting develops, risk of graft vs. host disease for the patient. In
antiemetics are less effective, and it has been the case of autologous BMT, a variety of ex vivo
suggested that behavioral strategies should be procedures are used to destroy the malignant
used to aid patients (Andrykowski, 1993; cells in the patient's marrow prior to reinfusion,
Morrow & Hickok, 1993; Redd, 1993). Other including treatment with cytotoxic drugs,
research that may be helpful includes identifying exposure to monoclonal antibodies that will
the characteristics of individuals (e.g., high attack tumor-associated antigens, or harvesting
pretreatment anxiety or autonomic activity; and introducing stem cells (cells from peripheral
severity of post-treatment vomiting in the early blood).
cycles; age; susceptibility to motion sickness or Patients (and their families) are faced with a
gastrointestinal distress), as well as character- number of stressors: a life-threatening illness,
istics of the agents (e.g., rated emetogenic location of a suitable donor (for allogeneic
potential of the regimen, dosages, rate of transplants see Alby, 1991; Patenaude, 1990), a
infusion) that place patients at risk of the toxic treatment, and common and potentially
development of nausea and vomiting (see Carey fatal side effects (e.g., liver failure). There are
& Burish, 1988, or Morrow, 1986, for empirical many acute side effects as well (e.g., hair loss,
tests of variables; see Morrow & Hickok, 1993, mouth and gastrointestinal mucositis, inferti-
for a review of the potential variables). lity, skin breakdown, infection, pneumonia).
Hospitalization is prolonged (often three to six
weeks or longer) and it is generally spent in
8.09.4.3.4 Bone marrow transplantation
isolation (Alby, 1991; Baker et al., 1991; Winer
Over the past two decades, bone marrow & Sutton, 1994). Of course, in the end, the
transplantation (BMT) has evolved from an treatment can fail and the cancer persist or
experimental procedure performed only when rapidly recur (Patenaude, 1990; Winer &
conventional therapies have failed (e.g., recur- Sutton, 1994).
rent breast cancer) to an effective therapy The many difficultiesÐtoxicity, uncertainty,
considered as an alternative worthy of study illness and isolation, dependency, constant need
in clinical trials as a first-line therapy (Baker, for care, expenseÐall contribute to patients
Curbow, & Wingard, 1991). It was initially used feeling out of control (helplessness), alone,
only for those with lymphohematopoietic anxious, and/or depressed (Alby, 1991; Altma-
malignancies or disorders characterized by bone ier, Gingrich, & Fyfe, 1991; Brown & Kelly,
marrow failure (e.g., leukemia, Hodgkin's 1976). In attempting to cope, patients may be
disease, and non-Hodgkin's lymphoma; Win- demanding, or the converse, withdrawn (Brown
gard, Curbow, Baker, & Piantadosi, 1991), but & Kelly, 1976; Patenaude, 1990). Psychological
is now being used with a variety of solid tumors efforts have focused on providing support to
(e.g., neuroblastomas, germ cell tumors, and patients, their families, and staff (Alby, 1991),
cancers of the breast and ovary). The rapid and maximizing control for patients, such as
acceptance and expanded use of this toxic making choices about the hospital environment
modality is no less than dramatic. For example, whenever possible (Patenaude, 1990). For
a Phase II study has begun in the USA for BMT example, BMT rooms are often equipped with
as an adjuvant treatment for breast cancer televisions/radios and weights and/or bicycles
patients with 10 or more positive lymph nodes are provided for exercise as patients become
(Winer & Sutton, 1994). If beneficial, it is stronger. Additionally, patients have been
possible that thousands of breast cancer encouraged to bring personal items from home
patients may undergo BMT as a standard (e.g., pictures, photographs) to decorate their
treatment for metastatic as well as regional rooms. Increased medical complications, age,
Psychological, Social, and Behavioral Impact of Cancer 225

distance from home, and poorer pretransplant 1993, for a review). Irvine et al. (1991) note that
psychosocial adjustment are associated with the research has not demonstrated consistent
need for more intensive psychological consulta- relationships between fatigue, anemia, sleep-
tion (Futterman, Wellisch, Bond, & Carr, lessness, and/or psychological distress (e.g.,
1991). negative mood/depression), but it appears that
fatigue does reduce overall daily functioning.
Psychological and behavioral interventions
8.09.4.3.5 Treatment side effects
have focused on alleviating or increasing
Important steps have also been made toward tolerance to fatigue through preparatory in-
understanding the etiology and prevention of at formation on side effects and activity±rest cycle
least three common disease/treatment-related recommendations (e.g., naps in the afternoon;
complications. First, appetite and weight loss Nail & King, 1987; Smets et al., 1993), as well as
are significant clinical problems for cancer other activity planning or coping efforts (e.g.,
patients susceptible to tumor-induced metabo- planning/scheduling activities, decreasing non-
lism or taste changes, having tumor-related essential activities, and relying on others for
obstructions (often diagnosed as primary ca- assistance as needed; Rhodes, Watson, &
chexia/anorexia), or receiving gastrointestinal- Hanson, 1988).
toxic chemotherapy or abdominal radiotherapy The expectation and/or experience of un-
(secondary cachexia/anorexia). Malnutrition is pleasant side effects can compromise a patient's
associated with increased morbidity and mor- quality of life such that the patient may miss
tality (Knox, 1991). Approximately 50% of the treatment appointments and be unwilling or
above patients will develop food aversions, and unable to continue treatment, regardless of
have two or three aversions to particular foods; whether it is curative or palliative (Morrow &
common aversions involve protein sources such Hickok 1993; Richardson, Marks, & Levine,
as meats, eggs, and dairy products (see Jacobson 1988). With noncompliance, the dosage of
& Schwartz, 1993, for a review). In particular, treatment may be reduced, which can, in turn,
learned food aversions due to chemotherapy lower the cure rate. In short, noncompliance is a
appear to be robust, with rapid acquisition behavioral problem that can have a direct
(usually after one to three treatments) and impact on the effectiveness of cancer therapy.
maintenance after long delays (e.g., 48 hours) Noncompliance with treatment has been
between food intake and aversive reactions related to increased emotional distress (e.g.,
(nausea) from the drugs (Bernstein, 1986; Gilbar & Kaplan De-Nour, 1989; Richardson
Jacobson & Schwartz, 1993). Research in this et al., 1988), severity of treatment side effects
area has pointed the way, for example, to (e.g., nausea and vomiting, Lewis, Linet, &
interventions employing novel tastes or ªscape- Abeloff, 1983; Richardson et al., 1988), and
goatº foods (e.g., lemon-lime Kool-Aid, unu- lower income (Lebovits et al., 1990). Even when
sually flavored hard candies such as coconut; patients are responsible for self-administration
Jacobson & Schwart, 1993) to ªblockº con- of therapy, such as taking their chemotherapy at
ditioning to familiar diet items, reducing food home in order to reduce the number of required,
and beverage intake prior to drug administra- but inconvenient, hospital visits, their noncom-
tion, and ingesting carbohydrate rather than pliance may continue. One report of multidrug
protein source meals. While food aversions may therapy with adults having hematologic malig-
not involve appetite or weight loss, patients may nancies indicated that self-reports (vs. sera
unknowingly develop aversions to their favorite reports) overestimated compliance by a factor
foods and this can affect their daily routine and of two (Richardson et al., 1987).
perceived quality of life (Jacobson & Schwartz, Psychological interventions have focused on
1993; Knox, 1991). a variety of methods to improve patient
Second, fatigue is a problem reported by the compliance, including appointment reminders,
majority of patients receiving radio- or che- clearly written and specific treatment commu-
motherapy (Nail & King, 1987; Smets, Garssen, nications (Anderson & Kirk, 1982), home visits,
Schuster-Uitterhoeve, & deHaes, 1993). Fati- and medication-taking shaping interventions
gue, and related symptoms described by (Richardson et al., 1987), as well as hospital
patients as tiredness, lack of energy, sleepiness, interventions such as offering a tour of the
confusion, and poor concentration have been oncology clinic, videotape presentations about
related to cancer morbidity and poor treatment the therapy, discussion/question sessions, and
compliance. Although a common experience, take-home information (Burish, Snyder, &
few studies have been conducted on the Jenkins, 1991). Burish et al. and others (e.g.,
correlates of fatigue (see Irvine, Vincent, Nail & King, 1987; Rainey, 1985) suggest that
Bubela, Thompson, & Graydon, 1991, for a preparatory information can improve coping
review; Pickard-Holley, 1991; see Smets et al., with treatment.
226 Cancer

Importantly, psychological interventions can (1992) suggest that the delay in intervention
reduce distress during and immediately follow- may have been beneficial because it afforded
ing cancer treatments. We now present the patients the time to reduce feelings of being
findings from two illustrative studies. Cain, overwhelmed and they were, therefore, more
Kohorn, Quinlan, Latimer, and Schwartz ready to participate in the intervention.
(1986) compared individual and group therapy Additionally, data indicated that patients with
formats with 72 women with recently diagnosed lower ego strength and cancer diagnoses other
gynecologic cancer or who were currently than breast cancer reported greater distress
receiving therapy for such a cancer. The and, therefore, particularly benefited from the
intervention had eight components including intervention, while patients with higher ego
discussion of the causes of cancer at diagnosis, strength tended to cope well regardless of the
impact of the treatment(s) on body image and intervention. These and related data (e.g.
sexuality, relaxation training, emphasis on Forester, Kornfield, & Fleiss, 1985; see An-
good dietary and exercise patterns, commu- dersen, 1992, for a review) attest to the
nication difficulties with medical staff and significant distress that occurs when patients
friends/family, and setting goals for the future are in the midst of coping with diagnosis and
to cope with uncertainty and fears of recur- treatment. Importantly, impressive gains can be
rence. The eight-session program was con- achieved by the end of the intervention and
ducted during individual sessions conducted in often these positive gains are stronger with
the hospital or the woman's home or in weekly continued follow-up. Again, these effects have
groups of four to six patients conducted at the been achieved with brief interventions.
hospital. Outcome measures were administered
pre- and post-treatment and at a six month
follow-up. Post-treatment analyses indicated all
8.09.4.3.6 Choosing cancer treatments
groups improved with time; however, anxiety
was significantly lower for the individual Psychological and behavioral data have been
therapy subjects only. Gains for the interven- (and should continue to be) important to
tion subjects were more impressive with the six patients and physicians alike for making
month follow-up data when there were no choices among comparable treatments. Treat-
differences between the intervention formats, ments that result in less quality of life
but both groups reported less depression and disruption often become standard treatment.
anxiety and better psychosocial adjustment The most obvious example of the importance of
(including health perspectives, sexual function- psychological data influencing cancer treat-
ing, and use of leisure time) than the no ments was that documenting the more positive
treatment control group. Thus, the brief outcomes (e.g., feeling more attractive, fewer
intervention, delivered either in individual or sexual difficulties) for women treated with
group format, appeared to be immediately breast-saving procedures (lumpectomy plus
effective, with gains enhanced during the early adjuvant radiation and/or chemotherapy)
recovery months. rather than modified radical mastectomy
Edgar et al. (1992) provided a psychosocial (e.g., Margolis, Goodman, & Rubin, 1990).
intervention to 205 patients who were rando- Similarly, lower rates of erectile and ejaculation
mized into two groups: one group received the difficulties (e.g., 30% vs. 90%) are important
intervention soon after entering the study and reasons for some men to choose supervoltage
the other group after a wait of four months. irradiation rather than surgery for prostate
The majority (n =159) of patients had been cancer (radical prostatectomy; see Andersen &
diagnosed with breast, colon, lung, uterine, or Lamb, 1995, for a review). Parallel treatment
head and neck cancers. Both groups were data are available for women with genital
assessed on depression, anxiety, illness worry, cancer including those with uterine disease
perceived personal control, and ego strength at (Andersen, Anderson, & deProsse, 1989a) or
entry into the study, and at 4, 8, and 12 month preinvasive vulvar disease (Andersen, Turn-
intervals. The intervention (comprising five quist, LaPolla, & Turner, 1988). Additionally,
one-hour sessions) focused on coping skills and Rathmell, Ash, Howes, and Nicholls (1991)
included problem solving, goal setting, cogni- suggest that unless a survival advantage is
tive reappraisal, relaxation training, and, at demonstrated, patients with advanced head and
four month intervals, workshops on healthcare neck cancer may want radiotherapy alone vs.
information and available resources. While surgery plus radiotherapy, as the treatment
coping improved over the year for all patients, combination is associated with poorer quality
the later intervention group experienced lower of life scores (e.g., psychological well-being,
levels of distress sooner than the group who had speech quality, ability to eat, levels of energy
received the intervention earlier. Edgar et al. and activity).
Psychological, Social, and Behavioral Impact of Cancer 227

8.09.4.4 Recovery and Long-term Survival a Diagnostic and statistical manual of mental
disorders (American Psychiatric Association,
The most important cancer end points have 1994) diagnosis of post-traumatic stress dis-
been treatment response rates, length of disease- order. It is unlikely that such extreme distress
free interval, and survival. Yet, as the prognosis occurs for the ªaverageº cancer patient, and
for some sites has improved, there has been instead may only be a possibility for those who
increased attention to the quality of life, have undergone the most difficult of treatment
particularly for long-term survivors of cancer. regimens (e.g., BMT), multiple agent and/or
The term ªsurvivorº typically refers to indivi- lengthy chemotherapy regimens, as might be
duals surviving at least five years, as the given to Stage III ovary patients, or those who
probability of late recurrence declines signifi- undergo life-altering and/or disfiguring cancer
cantly after that time for most sites. As treatments (e.g., limb amputations, pelvic
individuals recover and resume their life exenteration, laryngectomies). As is the case
patterns, there may be residual emotional with anxiety disorders, individuals with a prior
distress, with some difficulties which require history of traumatic stress might also be at
continued coping, and even the appearance of heightened risk.
still other problems (late sequelae). We will Secondly, some cancer survivors may need to
discuss each of these circumstances, and provide cope with the expected, but nevertheless
examples of both emotional and physical troubling, sequelae which may be consequences
challenges which may confront the cancer of the disease or treatment and be permanent.
survivor. For example, coping with altered abilities (e.g.,
An investigation by Dunkel-Schetter, Fein- loss of natural speech following laryngectomy)
stein, Taylor, and Falke (1992) sheds light on or changes in organ functions (e.g., infertility)
the strategies cancer patients use as they recover may require adjustment which demands new
and resume their life activities. They studied behaviors or emotions. Others may have to cope
coping patterns of 603 cancer patients. Patient with losses (e.g., a sexual relationship that does
diagnoses included breast cancer, gastrointest- not include intercourse). Thirdly, late side
inal, circulatory or lymph, gynecological, and effects of cancer treatment, for example, a
respiratory cancers, as well as others. The bowel dysfunction that is traced to pelvic
timing of the assessment ranged from initial radiotherapy, can occur and change health
diagnosis to more than five years post-treat- status as well as impact mood and coping.
ment. Five coping patterns were identified: Despite these possibilities, longitudinal data
seeking or using social support, focusing on indicate that if the disease is controlled, by one
positive aspects, distancing, cognitive escape- year post-treatment the severe distress of
avoidance (e.g., fantasizing or wishful thinking diagnosis will have dissipated and emotions
with fatalistic thoughts of poor outcomes), and will have stabilized. The first longitudinal
behavioral escape-avoidance (e.g., social with- studies conducted in the UK for breast cancer
drawal, drug use). All patients used multiple patients indicated that by 12 (Maguire et al.,
coping strategies, but distancing was the most 1978) and 24 months (Morris, Greer, & White,
common. Unique patterns were found for 1977) that approximately 20% of the patients
subgroups. For example, individuals who had problems with moderate to severe depres-
viewed cancer as more stressful tended to use sion in comparison to 8% of benign disease
cognitive and behavioral escape-avoidance comparison subjects. However, controlled long-
strategies, whereas patients reporting less dis- itudinal studies of breast (Bloom, 1987; Vino-
tress relied on seeking or using social support, kur, Threatt, Caplan, & Zimmerman, 1989) and
focusing on the positive, and distancing. Data gynecologic (Andersen et al., 1989b) patients
such as these may have many uses, such as being conducted in the USA and replicated with data
used to tailor psychological interventions to from The Netherlands (deHaes, van Oostrom,
patient subgroups (e.g., identifying those pa- & Welvaart, 1986) have indicated no differences
tients who are likely to use drugs/alcohol to between the levels of emotional distress of
cope). women with cancer and either benign disease or
Lingering emotional distress from the trauma healthy comparison subjects. Similar declines
of diagnosis, treatment, and, more generally, and lowered levels of distress have been found in
life threat, may occur for a small subset, 5±10%, retrospective (Cella & Tross, 1986) and long-
of cancer patients. When pronounced, this itudinal (Devlen et al., 1987) studies of
long-term distress has been likened to post- Hodgkin's disease and non-Hodgkin's lympho-
traumatic stress disorder. In fact, having ma patients. The consistency of findings for the
residual distress from the diagnosis and treat- studies conducted during the 1980s is important
ment of a life-threatening illness is included as because it represents replications across site,
one of the circumstances which may precipitate and, to some degree, treatment toxicity. In sum,
228 Cancer

we preface the remaining discussion by noting complications associated with long-term adju-
that global adjustment problems do not occur vant tamoxifen therapy for breast cancer, Wolf
for the majority of cancer survivors; a more & Jordan, 1992; female androgen deficiency
likely scenario is the occurrence of problem syndrome resulting from cytotoxic agents and/
areas. or bilateral salpingo-oophorectomies, Kaplan
Irvine, Brown, Crooks, Roberts, and Browne & Owett, 1993). Controlled longitudinal studies
(1991) concluded in their review of survivorship of breast cancer patients (Maguire et al., 1978;
following breast cancer that few patients Morris et al., 1977) and gynecologic cancer
experience long-term psychological distress, patients (Andersen et al., 1989a) have indicated
yet 20±30% will experience loss of roles (e.g., that if sexual problems develop, they do so as
employment), decreased functional abilities, soon as intercourse resumes, and, if untreated,
and problems with social relationships. Data they are unlikely to resolve (see Andersen &
on the adjustment of BMT survivors reveal a Elliott, 1994, for a discussion).
somewhat slower recovery (Syrajala, Chapko, In addition to medical contributors, we have
Vitaliano, Cummings, & Sullivan, 1993). Com- focused on identifying sexual relevant psycho-
parison of BMT survivors and other cancer logical factors in predicting risk for sexual
patients on maintenance chemotherapy indi- morbidity. Specifically, sexual self-schema (self-
cated that psychological functioning was satis- concept) is a cognitive view about sexual aspects
factory for both groups when assessed three to of oneself; it is derived from past experience,
four years postdiagnosis (Altmaier et al., 1991). manifest in current experience, and it guides the
However, when BMT patients were assessed processing of domain-relevant social informa-
sooner (two or four years post-treatment), they tion (Andersen & Cyranowski, 1994). The
reported poorer physical functioning, greater concept includes two positive aspectsÐan
impaired personal functioning (e.g., need for inclination to experience romantic/passionate
self-care assistance), and more relational pro- emotions and a behavioral openness to sexual
blems (e.g., sexual difficulties) than individuals experiences and/or relationships; and a negative
on maintainence chemotherapy (Altmaier et al., aspectÐembarrassment and/or conservatismÐ
1991). Also, there are data to suggest that there which appears to be a deterrent to sexual
may be some risk of neuropsychological expression. Using a measure developed for this
impairment from BMT procedures. Data from purpose, the predictive power of sexual schema
Andrykowski et al. (1992) suggest impairments was examined in the context of risk for sexual
in memory and higher cognitive processing, morbidity following gynecologic cancer. Con-
which may be a sequela of BMT, per se, or prior sistent with our definition of the construct, we
cancer treatments which precede BMT (e.g., anticipated that women with a negative sexual
cranial radiation, intrathecal chemotherapy). self-concept, in contrast to women with a
The many difficult aspects of BMT noted above positive sexual self-concept, would be at greatest
(e.g., intensive chemotherapy, possible whole risk for sexual difficulty. Negative sexual
body irradiation, long recovery time, isolation) schema women would be expected to have
may account for this slowed and potentially more difficulties because they are, in general,
more problematic recovery (see Andrykowski, less romantic/passionate in their emotions, less
1994; or Winer & Sutton, 1994 for a review). open to sexual experiences, and more likely to
Data suggest that sexuality may be one have negative feelings about their sexuality.
dimension that is more likely to undergo In a field test of sexual schema in the
disruption than other major life areas. All prediction of gynecologic cancer outcomes
cancer patients with solid tumors (approxi- (Andersen, Woods, & Copeland, 1997), we
mately 85% of adult patients) are vulnerable to assessed 62 women who were currently disease
sexual dysfunction. Across sites, estimates range free but who received treatment from six months
from 10% (e.g., breast cancer patients treated to five years previously for Stage I±II disease.
with lumpectomy), 70±90% (e.g., women with Comparison subjects included 68 women seek-
vulva cancer treated with modified radical ing routine gynecologic care. Analysis of the
vulvectomy), to 100% (e.g., men with prostate quality of life data replicated earlier prospective
cancer treated with radical prostatectomy), with longitudinal findings (Andersen, Andersen, &
the distribution skewed toward greater levels of de Prosse, 1989a)Ðspecifically, sexuality is the
disruption (see Andersen & Lamb, 1995, for a major life area of disruption for the survivor.
review). Among the hematologic malignancies, For example, there were no differences between
such as Hodgkin's disease, estimates are in the groups in the areas of mental health
the range of 20% (Andersen & Lamb, 1995). (emotional distress, depression) or social func-
The data within treatment sites indicate that tioning. In contrast, a comparison between the
disease and treatment factors are the primary samples in terms of current sexual functioning
etiologies for sexual problems (e.g., gynecologic found significant differences, with the cancer
Psychological, Social, and Behavioral Impact of Cancer 229

sample reporting lower levels of sexual beha- Hamovitch (1988) found that those kin who
vior, sexual responsiveness, and global evalua- were functioning poorly (e.g., lower perceived
tions. We tested the utility of the schema personal control, less adequate emotional
construct with the cancer sample in the support from close others, and greater stress
prediction of sexual responsiveness (e.g., desire, unrelated to cancer) when the patient was
excitement, orgasm, and resolution) and sexual diagnosed, or who lost personal and social
behavior (frequency of intercourse) with regres- resources during the patient's treatment and
sion analyses. Sexual self-schema accounted for recovery, tended to function poorly at follow-
a significant and large portion of the variance up. In sum, a subset of partners and family
(26%) in the prediction of current sexual members appear to be at psychosocial risk. For
responsiveness. a review of strategies (focusing on information
The high incidence of sexual and fertility and support) that have been used to assist
disruption has, in part, been the reason for the spouses of cancer patients cope with stress over
concern over marital disruption among adult the illness course, see Northouse and Peters-
cancer patients. An early clinical study of Golden (1993).
women receiving radical mastectomy noted Finally, other, nonpsychological difficulties
the realistic feelings of body disfigurement that may occur following cancer, and these problems
both the women and spouses would feelÐ may have psychological concomitants (e.g., low
prompting sexual retreat, emotional estrange- self-esteem, perceived worthlessness). For ex-
ment, and, not surprisingly, marital disruption ample, it has been found that survivors of
(Bard & Sutherland, 1952). Other concerns over childhood or adolescent cancer are at risk of
the marriage originate from analyses of the rejection from the armed services or college
interpersonal relationships, per se, (Wortman & entrance and have difficulty obtaining health
Dunkel-Schetter, 1979). Despite the emotional and life insurance (Teta et al., 1986). Job
distress and, for some, accompanying sexual discrimination and insurance difficulties have
disruption that couples experience, data from also been reported by survivors of bone marrow
retrospective studies with comparison groups transplantation (Wingard et al., 1991).
(Cella & Tross, 1986) and from the controlled There have been few interventions targeted
longitudinal studies previously discussed indi- for cancer survivors per se. One such study was
cate that the majority of marriages remain intact that by Telch and Telch (1986). They compared
and satisfactory. These data are consistent with the effectiveness of coping skills instruction vs.
prospective studies showing that, when health supportive therapy for a heterogeneous sample
problems arise for newly married couples, they of cancer patients on follow-up. An important
are not among those problems precipitant to research design aspect was the screening of the
divorce (Bentler & Newcomb, 1978). However, subjects, and only those with ªclear evidence of
multicenter studies have indicated that young psychological distressº were included in the
survivors of childhood cancers are significantly trial. Both interventions were offered in a group
less likely to marry, and once married they may format. Instruction in coping skills taught
be at greater risk for subfertility (Byrne et al., cognitive, behavioral, and affective strategies
1985, 1988; Teeter, Holmes, Holmes, & Baker, and included goal setting, self-monitoring, and
1987). role playing. Relaxation training and stress
Yet, the cancer experience is stressful for management skills were also included and
those closest to the patient (see Baider, Cooper, patients provided ratings of their home practice.
& Kaplan De-Nour, 1996, for a review), and the The group support intervention provided an
kin's distress may approach that of the patient's environment for patients to discuss concerns
(Baider & Kaplan De-Nour, 1988; Cassileth but there was no specific agenda. Each group
et al., 1985). Family strain appears to be affected met for six weeks. Forty-one cancer patients
by illness variables (e.g., prognosis, stage/ completed the study. Analyses for the emotional
duration of illness, care-giving demands, pa- distress data indicated that the coping skills
tient's distress), family variables (e.g., age and group improved significantly across all mea-
gender of family members, socioeconomic sures, the support group improved on anxiety
status, other family stressors), and relational and depression only, but the no treatment
variables (e.g., quality of marriage, marital control worsened and reported significantly
communication, family stage, and social sup- more mood distress.
port; see Sales, Schulz, & Biegel, 1992, for a
review). Those couples in which the wife/mother
has cancer and young children are still in the 8.09.4.5 Recurrence and Death
home may be at heightened risk for relationship
difficulties (Vess, Moreland, & Schwebel, 1985). Cancer recurrence is devastating; the magni-
In addition, Ell, Nishimoto, Mantell, and tude of distress is even greater than that found
230 Cancer

with the initial diagnosis (Mahon, Cella, & fewer phobic responses and lower anxiety,
Donovan, 1990; Thompson, Andersen, & fatigue, and confusion and higher vigor than
DePetrillo, 1992), and studies contrasting the controls. These differences were evident at
cancer patients showing no evidence of disease all assessments but the magnitude increased
with those receiving palliative treatment (e.g., from 4 to 12 months. There was also a
Cassileth et al., 1985) have reported the greatest significant decrease in the use of maladaptive
distress for those with disseminated disease coping responses by the intervention group.
(Bloom, 1987). Patients recently told of their Regarding the findings from the hypnosis
cancer recurrence reported being less hopeful, substudy, women receiving hypnosis within the
more discouraged, having increased thoughts of group support intervention reported no change
death and dying as well as feelings of guilt and in their pain sensations during the year, while
regret about their previous treatment decisions. pain sensations significantly increased for the
In one study (Mahon et al., 1990), 45% of the other women in group support who did not
patients indicated that they perceived their receive hypnosis. Similar findings were reported
recurrence as ªpunishment.º Therefore, diffi- for pain sufferingÐa slight decrease for the
cult decisions (e.g., beginning a regimen that women who also received hypnosis and a
offers little chance for cure and has side effects significant increase in suffering for the remain-
vs. no treatment) are made in a context of ing intervention women. It is important to note
extreme emotional distress and physical debil- that pain sensation scores for both groups were,
itation. However, the few studies of psycholo- however, significantly lower than those for the
gical interventions for adult patients have no intervention controls, suggesting that the
indicated that important emotional gains can hypnosis component provided an additive
be achieved during terminal stages (Linn, Linn, analgesic effect to other group treatment
& Harris, 1982) and that children and adoles- components. The most startling data from this
cents, as well as adults, can make independent project were reported in a survival analysis
decisions about the continuation of therapy described at the beginning of the chapter. A
when death is imminent (Nitschke et al., 1982). variety of follow-up analyses, controlling for
At this time of significant emotional turmoil initial disease stage, days of radiotherapy, or use
and physical difficulty, psychological interven- of androgen or steroid treatments were con-
tions appear to enhance the quality of life. One ducted and all indicated the same survival
example is an investigation of a group support differences favoring the intervention partici-
intervention for women with breast cancer pants. Unlike other studies, interventions for
conducted by Spiegel and colleagues (Spiegel terminal patients tend to be intensive and
& Bloom, 1983; Spiegel, Bloom, & Yalom, lengthy, such as ªseveral sessionsº or ªuntil
1981). Women were randomized to no treat- death.º
ment or a group treatment intervention that Finally, a frequent complication of dissemi-
included discussion of death and dying, family nated disease is pain. Although it might be one
problems, communication problems with phy- of the first symptoms of cancer or be present
sicians, and living fully in the context of a when disease is localized, pain is more common
terminal illness. The intervention subjects were and less controllable for those with metastatic
also randomized a second time to two condi- disease (Ahles, Ruckdeschel, & Blanchard,
tions: no additional treatment or self-hypnosis 1984). Some 80% of patients with recurrent
for pain problems (Spiegel & Bloom, 1983), cancer report moderate to severe pain compared
which was incorporated into the support group with 40% of earlier stage patients (see Ashburn
format. All intervention groups met for weekly & Lipman, 1993, for a review). The major cause
meetings for one year, for a total of 75 therapy of cancer pain, accounting for roughly 70% of
hours. At the end of the first year the groups the cases is due to direct tumor involvement
formally ended, but members could continue to (e.g., metastatic bone disease, nerve compres-
meet as they wished or were able; some groups sion). Another 20±30% of cases are due to
lasted for an additional two years. Eighty-six medical therapy (e.g., postoperative pain,
women, 50 intervention and 36 no treatment radiation-induced pain). The remaining cases
control, with metastatic breast cancer and are individuals with pain problems unrelated to
referred to the intervention by their oncologist, their cancer (e.g., osteoarthritis; Foley, 1985).
participated. Following random assignment, Thus, the pain experienced by cancer patients
there was subject loss (e.g., refusal, too weak, can be any combination of acute malignant
death) with the study beginning with 34 pain, chronic malignant pain, and/or chronic
intervention and 24 control participants; how- nonmalignant pain (Ashburn & Lipman, 1993).
ever, the survival data are reported for the As the pain experienced by each patient is
original sample of 86. Analyses indicated that variable (e.g., type, duration, resting vs. active,
the intervention group reported significantly diagnosis/treatment factors), it is important
Conclusion 231

that a pain assessment be completed before and patients might be at greatest risk for adjustment
during implementation of treatment for pain difficulties (see Andersen, 1996, for a discus-
control (Ashburn & Lipman, 1993; Coyle, sion). The latter is an important step toward
Adlehardt, Foley, & Portenoy, 1990). Besides designing interventions tailored to the difficul-
pain-specific qualities and diagnostic/treatment ties and circumstances of cancer patients.
considerations, other factors are also important The mental health community emphasizes the
in assessing the patient's experience of pain. For need to reduce stress and prevent deteriorations
instance, pain is associated with depression, in quality of life for those with cancer. The
anxiety, and delirium (Massie & Holland, 1992), importance of such efforts is underscored by
and may increase suicidal ideation (Coyle et al., three contextual factors. One, the stability of
1990). If pain worsens or is difficult to control, many cancer mortality rates, particularly those
quality of life deteriorates and emotional with the highest incidence such as lung and
distress increases (Massie & Holland, 1992), breast, makes it imperative that new, innovative
physical mobility may lower (Ashburn & Lip- treatments be developed to improve survival
man, 1993), and social interactions may decline rates. Two, research has demonstrated that
(Strang & Qvarner, 1990). psychological interventions result in significant
The most difficult circumstance of pain improvements in quality of life (see Andersen,
control is when chronic pain accompanies 1992, for a review). Three, both qualitative
disease progression. Treatment combinations (Maier, Watkins, & Fleshner, 1994) and
of antitumor therapy, anesthetic blocks, and quantitative (Herbert & Cohen, 1993a, 1993b)
behavioral approaches are considered. Beha- summaries of the psychoneuroimmunology
vioral research has focused on assessment literature conclude that psychological distress
strategies (Daut, Cleeland, & Flanery, 1983; and stressors (e.g., negative life events, both
Keefe, Brantley, Manuel, & Crisson, 1985) and acute and chronic) are reliably associated with
on pain reduction interventions, particularly changesÐdownregulationÐin immunity. Thus,
hypnosis, to reduce pain (Spiegel & Bloom, addressing the mental health needs of those with
1983). When palliative therapy is of little use cancer will have important quality of life
and/or brings further debilitation, psychologi- benefits and the possibility is raised of positive
cal interventions may provide support and pain biologic (or health) consequences as well. Figure
control and, secondarily, treat pain sequelae 1 provides a conceptual model of the psycho-
(e.g., sleep disturbances, reduced appetite, logical and behavioral factors and biologic
irritability). mechanisms by which disease or health out-
comes might be influenced. The majority of the
paths move in one causal direction. We have
8.09.5 CONCLUSION discussed the importance of conceptual models
in guiding future intervention research and in
Significant progress has been made in under- testing for any health benefits of psychological
standing the psychological, social, and beha- interventions (see Andersen et al., 1994).
vioral aspects of cancer. There has been A growing literature on the use of psycho-
progress in prevention and control. Research logical interventions to improve the cancer
on smoking prevention and cessation addresses patient's quality of life also exists (Andersen,
the factor responsible for 30% of all cancer 1992). The effectiveness of these interventions is
deaths. Similar efforts to encourage participa- robust, as they have reduced distress and
tion in screening and early detection programs enhanced the quality of life of many cancer
for breast, cervix, skin, prostate, and colon and patients differing on disease stage as well as
rectum cancers may also improve mortality disease site. Despite the challenges of studying
rates. these patients, well-controlled investigations
More is known about the psychological have been conducted. Improvements in emo-
processes and reactions to the diagnosis and tional distress are found at the end of the
treatment of cancer than is known about any interventions with continued gains at follow-up.
other chronic illness. Breast cancer patients (see In addition, change in other areasÐself-esteem/
Glanz & Lerman, 1992, for a review) have been concept, death perceptions, life satisfaction,
well studied, but other disease sites, men, and and/or locus of controlÐhave been found.
children, are becoming more commonly stu- Important for quality of life, psychological
died. Future research will probably test the interventions could also lower or stabilize pain
generalizability of these descriptive data and reports. The positive outcomes for terminal
formulate general principles of adjustment to patients are notable considering their worsening
illness. While providing estimates of the pain and/or increasing debilitation.
magnitude of quality of life problems, these While there appear to be unique intervention
data can be used for models that predict which components for different phases of the disease,
232 Cancer

Cancer Disease:
Compliance
diagnosis and Local
treatment
CNS
innervation

Neuro- Immunity Disease


Stress endocrine course

Reduced Health Disease:


QoL behaviours metastatic

Figure 1 Theoretical model. A biobehavioral model of the psychological, behavioral, and biologic pathways
from cancer stressors to disease course. CNS = central nervous system. From Andersen et al. (1994).

there are some commonalities. Therapy com- more than situational improvement and may
ponents have included: an emotionally suppor- alter an individual's longer-term adjustment
tive context to address fears and anxieties about processes is suggested by data indicating that
the disease, information about the disease and adjustment gains continue (and often increase)
treatment, behavioral coping strategies, cogni- during the first post-treatment year. Immediate
tive coping strategies, and relaxation training to and longer-term psychologic changes may, in
lower ªarousalº and/or enhance one's sense of turn, increase the likelihood of changes in
control. The descriptive data also highlight the behavioral mechanisms, such as increasing the
need for focused interventions for sexual likelihood of adaptive health behaviors (com-
functioning, particularly those treated for plying with medical therapy; improving diet,
gynecologic, breast, and prostate cancer, and exercise, etc.), to improving mental health
the intervention studies attest to the effective- directly, ªadjustmentº and, possibly, medical
ness of these specific components. These various outcomes (e.g., disease-free interval). These
components appear more important to outcome data indicate that, increasingly, issues of quality
than procedural variations. For example, of life are being raised, and positive results have
therapy format, such as individual or group, been achieved by the behavioral scieces. But as
appears to have little impact. Also, there were with most issues, further commitment and
null findings for (group) interventions that action are needed.
included no structured content, suggesting that
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