Breast cancer: Varied perceptions of social support in the illness experience

SW. Sci. Med. Vol. 16. PP. 483 to 491, 1982 Printed in Great Britain. All rights reserved

0277-9536/82/040483-09!503.00/0 Copyrght 0 1982 Pergamon Press Ltd

BREAST CANCER: VARIED PERCEPTIONS OF SOCIAL SUPPORT IN THE ILLNESS EXPERIENCE HOLLY Department

PETERS-GOLDEN

of Behavioral

Sciences, The Johns Hopkins University, School and Public Health, Baltimore, MD 21205, U.S.A.

of Hygiene

Abstract-Social support has been identified as an important factor in cancer. However, the stigma associated with cancer often leads to avoidance behavior and withdrawal of support. This investigation examines perceived social support in a population of 100 breast cancer patients, and anticipated social support among 100 disease-free individuals. Results demonstrate that healthy individuals report assignment of stigma and avoidance behavior directed towards cancer patients, yet they believe they themselves would have a dense network of support to call upon if stricken with cancer. Patients report nonmaterialization of expected support networks, and decreased adjustment due to this subjective experience. In addition, patients assert that the support extended to them is often inappropriate in nature, due to the mistaken assumption on the part of healthy individuals that the most salient concern of a mastectomized woman is the loss of her breast, rather than the fact that she has cancer.

for a cancer patient’s obituary to read “died after a long illness”. Intense fear is a major contributing factor in the stigmatization of an illness, and cancer is feared more than any other disease [25-311. Even the word is powerful [25,32]. Many illnesses with worse prognoses are accepted with less terror [26]. Numerous explanations have been offered for this widespread phenomenon, and the following attributes of the disease may contribute to the stigma. (1) Perhaps the most pervasive belief about cancer is that it is unerringly fatal [25,33-351. Reports of spontaneous remissions, hopeful prognoses with early detection, and advances in radio- and chemotherapy are greeted suspiciously: although the public eagerly awaits ‘the cure for cancer’, they still regard the cancer patient who is doing well as ‘lucky’. Surviving after the diagnosis of cancer is a fluke. Sontag [25] quotes Wilhelm Reich: “what is not fatal is not cancer”. (2) Cancer not only means death, it means a spectacularly wretched death [30,35,36]. Cancer creeps, invading slowly, and eventually devouring the host. It causes unbearable pain [37]. (3) Before it kills, cancer mutilates [37]. Sometimes this mutilation is part of the treatment (as in the case of mastectomy for breast cancer), but other times the tumor itself erodes the patient. (4) This erosion from within, beginning with a single aberrant cell, exemplifies the traitorous nature of cancer: the body turns on itself in a particularly frightening way [14]. Cancer can be silent-without any warning a person can be at an advanced stage of the disease. This stealthiness seems particularly unfair. (5) Cancer, to many, is a uniquely ‘unclean’ disease [27]. The cancer patient is repugnant, with a singular ability to “evoke physical aversion and disgust in others” [31]. This image of contamination-both of being contaminated and having the ability to contaminate others-is found throughout the literature [15; 24,25,38]. Not only others are repelled; some cancer patients themselves “share an inner revulsion, a concept of feeling themselves unclean” [23]. (6) The mistaken belief that

An individual’s support network has been defined as “that set of personal contacts through which the individual maintains his social identity and receives

emotional support, material aids and services, information, and new social contacts” [l]. The functions of a support network are many and varied, and take on increased importance during times of crisis, conflict, and stress [2]. The network may both provide absent feedback [3] and reduce confusing feedback Cl], as well as offer greatly needed information and advice. The support system has been seen to act as a ‘buffer’, protection from the stressful aspects of a crisis [4], and as a ‘preceding factor’ [S] which may reduce the likelihood of the crisis occurring. Support can be tangible (money, assistance in activities) or intangible (encouragement, affection). The literature is replete with examples of the benefits of social support, and the detriments of its absence. Pilisuk and Froland [6] found that “a person living a socially marginal existence or one who has recently lost his circle of intimate relationships through geographic mobility, becomes substantially more prone to illness, in all forms”. The importance of social support to the health of an individual has been examined at all stages of the illness process: at the onset in relation to disease etiology [7], during the illness crisis [l], and during convalescence and rehabilitation [8,9]. The crises of bereavement [6,8, lo], tuberculosis [ll], psychiatric disorders [2,3], heart disease [7], and cancer [9] have all been shown to be positively influenced by social support. With the diagnosis of cancer comes a uniquely desperate need for social support, often eliciting an equally desperate need on the part of others not to provide that support. The stigma assigned to cancer is widely reported [8, 12-261, and stigma is often a salient factor in avoidance behavior and withdrawal of support. Cancer patients refer to themselves as “the new lepers” [23], and the literature provides numerous anecdotes to support that assertion. The stigma persists even after death: it is not uncommon 483

HOLLY PETERS-GOLDEN

484

cancer is contagious is a curious myth. Perhaps one reason it is so widespread is that cancer is still, by and large, very much a mystery. Although some types can be linked with causal agents (cigarette smoking and lung cancer, for example), for the majority of cancers no specific etiology is understood. If the cause of cancer cannot be determined, who, then, is to say that it is not contagious? (7) Cancer is different not only because it fails to conform to the Western model of (known) cause and (predictable) effect, but also because even if the patient cooperates fully with the physician and follows the treatment regime faithfully. there can be no guarantee that therapy will succeed [36]. Moreover, even when cancer is thought to have been ‘cured’. there is the constant likelihood that it will return. (8) Successful or not, cancer therapy is uniformly dreaded. It is not unusual for patients to feel that the treatment is worse than the disease [lS. 24.34.393. In fact, it is often the case that the cancer has produced no discomfort, while the drugs used to treat it cause very unpleasant side effects, chief among them nausea and vomiting, hair loss. fevers, infection and mouth ulcers. (9) Many illnesses are thought to be retribution for some wrongdoing. This ‘punitive myth’ is an important feature in the image of cancer. Wortman and Dunkel-Schetter [31] report that there is evidence that “individuals are motivated to believe in a ?ust world’ in which people ‘get what they deserve and deserve what they get.’ Since having cancer is such an undesirable fate. individuals may be strongly motivated to protect themselves by attributing the disease to others’ undesirable personal characteristics or their past behavior”. This example of ‘blaming the victim’. if substantiated, may contribute to the imputation of stigma. (10) The prospect of stigmatization and social ostracism has been cited as a major contributing factor to cancerophobia [19,23-251. (11) Cancer is incorrectly believed to be the leading cause of death in the United States and abroad [40]. In fact, a British survey found that. despite a public cancer education program, the percentage of respondents who believed that cancer was the main cause of death in the United Kingdom increased from 62% (1966) to 66% (1973). In addition to overestimating the number of deaths from cancer, the public also underestimates cancer’s rate of cure. If all types of cancer are included. the disease has a ‘cure rate’ (i.e. 5 year survival without recurrence after completion of treatment) of 47%. In contrast. 509;; of all stroke victims die within a year of their strokes: 350, of all coronary patients are dead within a month of their heart attacks [23]. The preceding attributes of cancer. along with the widespread uncertainty as to the ‘correct’ thing to say to a cancer patient, all contribute to the withdrawal or nonmaterialization of support often encountered by cancer patients. There is evidence [31] that those patients whose support needs are met report higher postoperative levels of self-esteem and self-efficacy. emotional adjustment, and coping skills than those who felt inadequately supported. METHODS

the other of disease-free individuals. One hundred women with a diagnosis of primary breast cancer were interviewed at an out-patient follow-up clinic in a state cancer facility. Interviews, which lasted from 30 to 40min, were guided by a question schedule designed to elicit a variety of cultural, social, and psychological data. A systematic sample of 100 diseasefree individuals. both male and female. were interviewed in the waiting area of a university general dentistry clinic. Both men and women were included in this population because the purpose was elicitation of lay health beliefs and attitudes towards cancer and cancer patients, and not a comparison of female cancer patients with well females. Interviews were guided by a question schedule which closely resembled that employed with the cancer patients, but altered to suit those without the disease. Cancer patients’ ages ranged from 26 to 80, with a mean of 57. All were white; 92 were Catholic, 6 Protestant, 1 Jewish, and 1 Greek Orthodox. Sixty-three were married, 18 widowed, 10 divorced or separated, 9 single (see Table 1). Ninety-three had been treated surgically upon diagnosis; 53 had recurrent disease. Of these 25 were receiving hormonal therapy. 19 chemotherapy, 2 radiation. Forty-five had no recurrent disease, but 14 of these were receiving adjuvant (prophylactic) chemotherapy. The remaining 31 were receiving no treatment (see Table 2). Patients ranged from 3 weeks to 21 years post-diagnosis and initial treatment, with the mean being 5; years (see Table 3). The disease-free informants ranged in age from 18 to 74. with a mean of 35. Sixty-one were female, 39 male. Ninety-two were white, 8 black. Forty-seven were Catholic. 22 Protestant, 15 Jewish. Forty-four were married. 36 single. 8 divorced, 5 widowed (see Table 4). SELECTED

Cancer is the disease most feared by the healthy population. an attitude which leads to avoidance behavior and. thus, diminished social support. Sixty-one percent said they would (56%) or might (5%) avoid Table 1. Cancer patient population (N = 100) Age At diagnosis

At interview

2G-29: I 3&39: 6 40-49: 32 5&59: 35 6&69: 17 70+: 7 NR: 1 Mean = 53 years

2&29: I 3@39: 2 40-49: 19 5tLb-59: 32 60-69: 26 70+ : 19 NR: 1 Mean = 58 years Marital

At diagnosis Married: 68 Widowed: 14 Single*: 9 Separated: 4 Divorced: 4

NR: 1 The sample of two hundred consisted of two populations. one comprised of breast cancer patients and

RESULTS

*Single = never married.

Religion Catholic: 92 Protestant: 6 Jewish: I Other: I Social Rucr White = 100

status At interview Married: 63 Widowed: 18 Single*: 9 Separated: 5 Divorced: 4 NR: 1

485

Breast cancer Table

2. Cancer

Surgical

patients:

stage of disease (N = 100) Medical

Treatment

Single mastectomy: Bilateral mastectomies: Lumpectomy: Mastectomy plus lumpectomy:

17 10 5

Totul =

93

Table 3. Cancer

and

I

patients:

Recurrent

treatment

regime

Treatment

diseuse

(N = 55)

Chemotherapy: Hormone Therapy: Radiotherapy: Untreated: Unrecorded treatment:

19 25 2 3 6

No recurrent disease Adjuvant chemotherapy: No treatment:

(N = 45)

interval

since diagnosis

14 31

(N = 100)

Time since diagnosis 6 months:

6 months+1 1-2 yr: 2-3 yr: 3-4 yr : 4-5 yr: 5-6 yr : yr: 7-8 yr: 8-9 yr : 9-10 yr: 61 yr: II-12yr: 12-13 yr: 13-14yr: 1415 l&l 1 yr: 15-16yr: 1617 yr: 20+ yr:

yr:

4 11 6 13 10 9 11

under 5 years 53

mean = 5+ years 7 4 21 1 5 5 2 2 i 3 2 1

more

than l5 years 6

with someone they knew had cancer; another 8% said they do not, but ‘other people do’. When asked if they would expect to be treated differently if they were cancer patients, 81% said they would (76%) or might (S??). When asked to specify how they might

contact

be treated differently, 32% anticipated that they would be pitied; 29% felt people would be nicer to them; 15% thought they would be avoided (see Table 5). Only 15% denied that they would ‘expect less’ of a cancer patient (less effectiveness at tasks, less com-

Table 4. Dental clinic population Gender

Social race

Male: Female:

Marital

39 61

Black :* White:

8 (women 92 (women

Religion

= 7. men = 1) = 54; men = 38)

47 22 15 8 8

Catholic: Protestant: Jewish: Other: No response:

Age

status

Married: Single: Divorced: Widowed: Cohabiting:

44 (men 36(men 8(men 5 (men 7 (men

= = = = =

14. women = 30) 18, women = 18) 5, women = 3) 0. women = 5) 2, women = 5)

18-24: 25-34 35-44: 45-54: 55-64: 65-74 Mean:

*Of the 8 blacks in the population: 5 = Protestant, 3 = married, 1 = widowed; 2 = 18-24. 2 = 3544, SAM. 16 4--1

(N = 100)

:

3 1 (men 29(men 12(men 13(men 9(men 6(men 36 years 34years

1 = Catholic. 2 = 55-64.

= 14, women = 14, women = 3, women = 2, women = 4, women = 2, women (men) (women) 2 = Other;

= 17) = 15) = 9) = 11) = 5) = 4)

4 = single.

486

HOLLY PETERS-GOLDEN Table 5. Disease-free

population:

major concerns post-mastectomy responses = 151)

(N = 100; number

of

Question: Once a woman learns she has breast cancer, undergoes a mastectomy and returns home to resume her previous routine, what do you think might be the most dificult or troubling aspects of her life? What are her major concerns?

Total Others’ &actions; people staring: Recurrence; ‘did they get it all’?: Sexual relationship with her husband: Self-image: Looking ‘normal’: Readjustment to old routine: Psychological and emotional reactions: Miscellaneous:* Physical recovery: She’d have nothing to worry about: Her family: Death: Pain: No response:

*Miscellaneous:

going swimming: 2; it depends:

39 24 19 17 15 10 8 5 4 4 3 1 1 1 iFi---

Women

N = 61

Men

N = 39

(43%) (25%) (18%) (16%) (18%) (10%) (7%) (3%)

13 9 8

(33%) (35%) (21%) (18%) (10%) (10%) (10%) (8%) (10%)

26 15 11 10 11 6 4 2 0 4 3 1 1 1 95

2; bending

(7%) (5%)

over:

1.

petence in general. less assumption of authority). cerns postulated for cancer are compared with those Ninety-four percent reported that they felt sorry for postulated for breast cancer, it is clear that mastecanyone with cancer. Only 28% said they made no tomy is regarded as the most prominent feature of the disease: concerns of the breast cancer patients are special effort to ‘cheer up’ a cancer patient, or exhibit assumed to be primarily cosmetic in nature. Invaoptimism in their presence; 66% said they would ‘go out of their way’ to cheer up a cancer patient. lidism and dependency, the projected major concerns of cancer patients, are not mentioned in the list of When asked on whom they would rely if they found they had cancer, 42% cited a combination of family, breast cancer patients’ presumed concerns; death, the friends, and professionals; 29% felt they would rely second most frequently cited concern of cancer primarily on themselves; 13% on their spouse; 13% patients, was mentioned by only one well person in on their doctor. Neither other patients nor self-help regard to breast cancer. While 39% presume the reacorganizations were cited. tions of others are of great importance to breast While opinions regarding cancer did not differ, for cancer patients, only 5% believe others’ reactions conthe most part, between men and women, beliefs cern the individual with cancer at any other site. Men regarding breast cancer did. Men made a major disoverwhelmingly cite the physical aspects of cancer tinction between having cancer and having breast 1(67%) as concerning them more than the social (26%); cancer: 82% felt that a woman would (72%) or might however, when assessing the concerns of a woman with breast cancer, men believe the social concerns (10%) be less likely to disclose the fact that she had breast cancer than cancer at any other site. Only 18% (337;) are similarly important to the physical (38%). felt a woman would be as likely to disclose breast Seventy-two percent of the breast cancer patients cancer as she would any other type of cancer. Seventyreported that they were treated differently after people seven percent of the healthy women reported that knew they had cancer. Of these, 72% found that the their disclosure pattern would not be altered if the most prevalent difference was that they were ‘misunbreast were the site of cancer; 16F/, said they would be derstood’; 52% found they were ‘avoided’ or ‘feared’; less likely to disclose breast cancer. Although only 14% felt they were pitied, and only 3% thought people 16% of the healthy population felt it would be embarwere ‘nicer’ to them than they had previously been. rassing to have cancer, 56% felt it would be embarWhen asked to explain how they felt ‘misunderstood’, rassing to have breast cancer: this opinion was held patients cited inappropriate comments by others, by 41% of the women and 79% of the men. Eightypriorities they assessed as misjudged (most prominent nine percent felt that the breast was or might be a among them, the emphasis on breast loss rather than sensitive and uniquely troubling site for cancer; only cancer treatment side effects, or fear of recurrence), 6% thought it was the same as any other site. When and expectations of behavior which differed from the asked if losing a breast was ‘one of the worst things patients’ own. In addition, they felt that interaction that can happen to a woman’, 70% of the women and was strained: when people met them on the street or came to visit, they were falsely cheerful. Patients 41% of the men said no; 26% of the women and 59% labeled this behavior incorrect: 60% were made to feel of the men said it would or might be. separated and alone by unrelenting optimism that When asked to list the major concerns of a woman seemed unauthentic. who has had a mastectomy for breast cancer, 39% Thirty-three percent of the patients stated that they mentioned ‘others’ reactions’ and ‘staring’; 24% recurrence; 19%, sexual relations; 17%, self-image; and relied on ‘no pne’ for support during their experience with cancer. Twenty-two percent depended on their 15% cited ‘looking normal’. Only one person mentioned death, and one said pain. When major conhusbands; 18% on a combination of family and pro-

Breast cancer Table 6. Cancer

patient

population:

487 support

(N = 100)

Question: Was the support you received from others adequate to fill your needs: Recurrent

disease

N = 55

Chemotherapy N = 19 4 12 3

Adequate support: Inadequate support: Inconsistent quality: Hormone therapy N = 25 Adequate support: Inadequate support: Inconsistent quality: Other* N = 11 Adequate support: Inadequate support: Total Total Total Total Total

12 7 6 9 2

No recurrent

N = 45

Adjuvant chemotherapy N= 14 Adequate support: (21%) Inadequate support: (63%) ‘I relied on myself: (16%) Undecided:

5 2 5 2

No treatment N = 31 Adequate support: (48%) (28%) Inadequate support: (24%) Undecided:

20 3 8

(82%) (18%)

50 26 9 5 10

adequate: inadequate: inconsistent: relied on self: undecided:

disease

Recurrent disease 25 (45%) 21 (38%) 9 (16%) 0 0

No recurrent 25 5 0 5 10

(36%) g!; (14;) (65%) (10%) (26%)

disease (55%) (11%) (11%) (22%)

100 *Other

= radiotherapy,

fessionals; 10% on religion; other cancer patients; and

untreated,

unknown.

8% on themselves; 5% on 4% on their doctors. Only

half the patients assessed the support they received as adequate to fill their needs. Twenty-six percent felt they received ‘inadequate’ support; 9% deemed their support ‘inconsistent’. Those with recurrent disease reported less satisfactory support than did those with no recurrence of their cancer. Furthermore, those patients with recurrent disease currently undergoing chemotherapy reported the least amount of adequate support (see Table 6). None of the patients said they would have altered their disclosure patterns had their cancer been at a different site. Only 10% found they had been ‘pitied because of their mastectomies. Sixty-nine percent reported no change in their self-image due to either their surgery of their cancer. Of those who felt they had changed in some way, 23% believed they were a ‘better person’ for their experience and appreciated life more fully. Only 6% of the patient population thought the breast was a uniquely sensitive or troubling site for cancer. The near-unanimous concern of the patients was recurrence of their cancer, whether or not they had already experienced one such recurrence. Ninety-nine percent of the population stated that recurrence was the primary concern of all cancer patients, regardless of the site, including themselves. INTERACTION It

AND SOCIAL

SUPPORT

is clear that the disease experience of the cancer patients in this sample differs greatly from that which is hypothesized by the healthy population. The latter’s misconceptions lead to a lack of fit between interactive and support needs as identified by the patients, and the quality of interaction and support provided by the healthy individuals who represent the largest

and most important part of the patient’s support network. The prospect of disclosing ones cancer is an issue which underscores the disease-free population’s isolation of the cancer experience from the rest of daily life, in contrast to the cancer patient’s incorporation of the disease into a new role. Thirty-one percent of the healthy population stated they would tell no one if they were diagnosed as having cancer; only 58% named even one person to whom they would disclose their illness. This is an unrealistic and untenable position. Discloure is not a matter of choice: the reality of the disease becomes so densely woven into the fabric of daily life that disclosure is a necessity. The overwhelming prospects of shame and stigma upon disclosure, as identified by the healthy respondents, are representative of the attitude which begins the pattern of avoidance behavior and withdrawal of support. Several explanations were offered by the healthy population for their avoidance of people with cancer. Most often mentioned was fear of death and dying. The presumption that cancer is fatal was commonly recognized by patients. It is indisputable that cancer is often a fatal illness, and the fear of dying from cancer is not unfounded. However, cancer patients feel that healthy individuals greatly overestimate the mortality associated with the disease; this, in fact, appears to be the case 12533351. Upon diagnosis, many patients are reassured that due to specific features of their case (among them cell type, site, stage of disease, and availability of treatment), there is reason for optimism. It is especially disconcerting to have this reassurance thwarted by the assumptions of family and friends. Discomfort about the ‘correct’ way to act is a salient factor in avoidance behavior, and is readily recognized by both groups. This discomfort takes several forms: individuals are not only unsure of

488

HOLLY PETERS-GOLDEN

what comments might be helpful. but are also afraid that they will say the wrong thing and instead do harm. One patient postulated that even when her friends knew what to say and what not to say, the need to be so conscious of these ‘rules’ was awkward. Barriers to conversation and communication lead to diminished support. It seems obvious that the logical course of action would be to offer the patient an opportunity to discuss his illness or not, as he desired. However. the overwhelming wish on the part of others to avoid becoming too closely involved (as well as the belief that it is better not to ‘remind’ the patient of his situation) appears to mitigate against this course for the majority of the disease-free population. There appears to be a great need to avoid identifying with the patient. Cancer, for all its horror, is an admittedly common illness. It is ironic that this feature of the disease should work in the patient’s disfavor. While patients often marvel that such a prevalent illness is regarded by others with the terror, disdain. and avoidance expected to be reserved for a rare medical horror. healthy individuals claim that it is their vulnerability to the same fate which keeps them away. This is especially true when they have been close to the patient. and have previously-formed bonds of identification. Some of the factors contributing to the stigmatization and avoidance of cancer patients are exaggerated, but grounded in fact. The overestimation of mortality and underestimation of cure rates are disconcerting to patients. but few things are as frustrating to them as the mythic notion that cancer is contagious. In addition. the fear of contagion is nearly impossible to combat. Despite the denial of such transmission by the medical establishment. such beliefs are widespread. and the burden of disproof-an impossible task-falls to the patient. Even respondents who said they knew cancer ‘isn’t really catching’ still admit they do harbor some doubt. While being avoided by others is clearly a source of distress for cancer patients. interaction is often equally disturbing. The conditional acceptance which underlies such encounters acts to discourage honest and mutually beneficial communication. This investigation supports the contention [31] that individuals bring to an encounter with cancer patients a set of beliefs and rules which govern both their own behavior and that which they expect from the patient. These expected social roles are derived from several sources: (1) the media: (2) medical knowledge: (3) individuals’ beliefs about illness in general. and cancer in particular: (4) contact with, as well as accounts of experiences with. cancer patients: (5) an understanding of our medical system and the experience of becoming a patient within it; and. (6) an understanding of the ‘meaning’ of cancer. and its social consequences. These factors coalesce to guide an interactive encounter. When asked if they would expect to be treated differently if they had cancer. 767; of the disease-free group replied affirmatively. Seventy-two percent of the cancer patients did report receiving different treatment after their diagnosis. Despite the similarity in incidence. however, the expected and actual reported differences were vastly discrepant in kind. Thirty-two percent of the healthy population projected they

would be pitied; 29% felt others would be ‘nicer’ to them; 15% felt they might be avoided. Cancer patients, however, reported much less benevolent reactions. Only 14% of the population reported being ‘pitied’; 3% found that people were nicer to them; 56% reported being avoided. In addition, 72”j, felt they were ‘misunderstood’ by people with whom they came in contact. This proportion is certainly striking. The healthy, while recognizing that relationships with family and friends are likely to be altered, seem to feel that the nature of interactions with others is much less disturbing than patients report it to be. Although they acknowledge that cancer is ‘the most terrible disthe social ramifications. ease’, they underestimate Those patients who had received expressions of pity from their friends and family felt this reaction was especially isolating. It is interesting to note that while 94% of the disease-free population reported that they felt sorry for people with cancer, only 32% believed that they themselves would be pitied if they were cancer patients. One of the most important features of the diseasefree role. as they see it, is to act as ‘encourager’ during an encounter with a cancer patient. Sixty-six percent reported that they would ‘go out of their way’ to cheer up a cancer patient, and this attitude has been previously reported [31]. Patients find that others do indeed exhibit this behavior, and identify it as one component of the ‘disease-free role’ which they most dislike. They report that such forced cheerfulness makes them feel ‘less normal’, and eclipses the opportunity to reveal and discuss their true feelings. This behavior may be a protective mechanism on the part of the healthy, and some patients recognize it as such. Another attribute of the disease-free role is repeated reference to how well the patient looks. Individuals seem to feel that telling a patient how well she looks-regardless of the statement’s veracity-will lift her spirits. Once again. patients report that this has the opposite effect. In addition to rules which guide their own behavior. the disease-free group appear to also have an image of the way patients ought to act. Information used in the construction of this putative social identity is gleaned from a variety of sources. It is assumed that the cancer patient knows this role, having been socialized as a healthy person. To this knowledge he adds the experience of having cancer. thus becoming a cancer patient. To the disease-free individuals the perspective of ‘cancer patient’ is created by the simple addition of one crucial experience. This assumption is at the base of many of the interactional difficulties encountered by the two groups. Wortman and Dunkel-Schetter [31] found that others believe that those patients who make no reference to their disease are the ‘healthiest’. The current healthy population also felt that those patients who wanted to discuss their illness were somehow less adjusted to their situation. Several individuals recounted surpriseand disapproval-at the desire expressed by an acquaintance with cancer to discuss his illness. This silence was not only expected to be for the patient’s benefit, but for his companion’s as well. If the patients insisted on discussing it, at least they were not to do so in negative terms. When the healthy person is making an effort to be cheerful and

Breast cancer optimistic, it is the patient’s responsibility to accept this optimism graciously and respond in kind. In fact, it has been noted [31,41] that those patients who have the opportunity to discuss their situation may be those who ultimately fare the best. Patients are both disturbed by this ban on communication and confused by the assumption that avoiding the subject would actually be better for them. Patients are aware that others seem to have an image of the way they ought to behave. In addition to being made to feel as if they are acting (and feeling) inappropriately, many patients report being made to feel incompetent to perform ordinary tasks which they are fully able to do. ‘Being babied (something surgical patients probably convalescing most encounter) lasted far too long, and patients resisted having this incapacitation foisted upon them via various strategies, such as saying that certain activities were specifically prescribed as therapy. There appears to be a point at which such patronizing ceased to be regarded as ‘helpful’ and became an oppressive limitation which interfered with normalization. The disease-free population confirmed patients’ feelings of underestimation: 76% of the former reported that they would expect less of a cancer patient (both at work and at home) than they would of others. It is interesting to note that while patients reported great distress at being prevented from carrying out their usual chores, it is just this ability to perform accustomed tasks which the disease-free group most often cited as indicating ‘good health’. The notions that the disease-free harbor about both their own and the patients’ roles act to discourage communication. Although most (84%) of the diseasefree group know someone with cancer (and it would be safe to assume that this is true of the general population as well), patients themselves appear to be an untapped source of information. It would seem likely that contact with a cancer patient would provide empirically grounded information on which to base expectations of the behaviors and attitudes of the prototypic cancer patient, as well as an opportunity to learn which behaviors on the part of the well person are most beneficial and desirable to the patient. However. numerous factors seem to mitigate against such exchange of information; hence, the roles of ‘cancer patient’ and ‘well interactor’ as constructed by the latter may be more presumptive and less based in fact than putative social roles assigned to others. The disease-free population expressed great confidence in the support they would receive from their social networks, in the event that they might have to call upon them for help in dealing with cancer. They describe dense networks of family, friends, and professionals from whom they could select those persons who would be most helpful. This attitude is also reflected by the low percentage (15%) of people in this group who felt they would be avoided were they to have cancer. Patients. however. find this expected network does not necessarily materialize. Feelings of having ‘no one to turn to’ were not uncommon (334;). The certainty on the part of the healthy group that ones support needs will be met is another example of their naivete regarding the integration of the disease into social reality. There is clear imputation of cause and effect in one patient’s comment. ‘Most people

489

would rather not discuss it, so I don’t have much support’, but the connection apparently escapes the disease-free. They do not wish to discuss cancer with patients, but do not associate that fact with the possibility that because this is so. they may find themselves unsupported. They do not translate the way they behave into the way they themselves might be treated. Patients report being ‘unprepared for the separation from other people’, perhaps because they too believed that their friends and family would be available to them in a time of great stress. The first indication, to many patients, that they would not receive the support they needed was the discovery that ‘people felt I was all of a sudden very different from them’. This led to the sense that people ‘began to shy away’. This evaporation of anticipated support has been reported elsewhere [31.42-J, and appears to be due to many of the same factors which lead to avoidance behavior. When support is offered, it is done so conditionally, much in the same way that social interaction is offered: contingent upon the patient’s acceptance of his role. It is in this way that interaction acts to socialize the patient. One woman recalled that she learned, through trial and error, which of her feelings she could vent with certain people. This sort of ‘testing the waters’, with support given or not depending on the circumstances, is a major part of a cancer patient’s socialization. Positively reinforced for ‘correct’ behavior, and negatively for ‘incorrect’, the patient begins to rearrange the network-adding and subtracting members, reassigning roles-until it becomes functional again. Many people expressed surprise at the ‘rearrangements’ in their friendships: many close friends from whom they had expected caring and understanding disappointed them, while seemingly ‘marginal’ friends helped them enormously. In an examination of emotional response to surgery for breast cancer, Bloom [43] identified social support as the most important predictor of adjustment in a sample of women with nonmetastatic breast cancer. Ervin [44] has found that a patient’s husband is the most pivotal person within this support network. The results of this investigation seem to support that assertion. Although the withdrawal of friends and other family members is a source of great consternation, the husband’s inability to offer support appeared to result in the most distress, as reported subjectively by patients. Conversely, those women whose husbands offered support and understanding reported making better adjustments to their situation, often citing that support as instrumental. To be sure, not all of those patients reporting adjustment problems attributed them solely to lack of support: some were in great pain, or confined to wheelchairs, or coming to terms with death. However, all of those who felt inadequately supported also claimed great difficulty in dealing with their illness experience. Those who felt least supported also felt most stigmatized: they reported being alone more often, avoided by family and friends, ‘branded’, and abnormal. Those women without adequate support had no liaison with the larger disease-free community, hence felt more separated both from others and from their former selves. In addition, they had less oppor-

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tunity to learn the expectations of others and begin readjustment. Women whose disease had recurred or who were undergoing chemotherapy reported more ‘inadequate’ or ‘inconsistent’ support than did those patients whose disease was arrested by mastectomy. This finding may be the result of both the increased need for support and the difficulty for friends and family in providing support to a patient whose illness has progressed or who is facing a toxic treatment regime. The disease-free population distinguishes between breast cancer and cancer at other sites, and the cancer patients point out that this is a common, if not constant, reaction. In the healthy group there was a significant difference in attitudes between men and women: 82% of men felt a woman would or might be less likely to disclose breast cancer than cancer at any other site. However, only 16% of women felt this would be true. Fifty-nine percent of the men but only 30% of the women believed losing a breast was one of the worst things that could happen to a woman. There appears to be a continuum formed by three perspectives: men (who distinguish cancer from breast cancer quite strongly, and focus on breast loss); women (who make less of a distinction, and emphasize breast loss less); and women with breast cancer (who may make a distinction between breast cancer and cancer at other sites, but who do so mainly on a medical basis, and who feel breast loss is a matter of secondary concern). Men in the healthy population cite physical factors (incapacitation, death) (67%) as more important concerns in cancer than social or emotional factors (26%). However, with regard to breast cancer, men anticipate less physical (33%) and more emotional (38%) concerns. Breast cancer seems to be viewed as a watereddown ‘women’s’ version of cancer; a less serious disease, although a social and emotional liability due to breast loss. Women in the disease-free sample seem to balance the two, regardless of site. The tendency of the lay population to overemphasize the loss of a breast, and not the fact that a woman has cancer, is an overwhelming complaint voiced by the patient population. They feel that cancer is generally regarded as a devastating physical illness, while breast cancer is simply viewed as losing a breast. Patients were surprised that family and friends did not understand that mastectomy was ‘a small price to pay’ for arresting their cancer. The fact that the cancer was in their breast seemed to serve as a diversion to others, clouding the issue at hand, and interfering with their interactions with family and friends. SUMMARY

To the healthy group, cancer is the most fearful of all diseases. It strikes without warning, rendering its victim incapacitated. It is, to quote one respondent, “a slow process of looking poorly”. With the physical deterioration it incurs often comes pain and disfigurement. Breast cancer, however, is regarded as less likely to be fatal; instead, concern revolves around the loss of an important physical attribute and the perceived assault on the feminine self-concept. The cancer patient is in need of mainly palliative social

measures: a kind word and an optimistic demeanor. The breast cancer patient needs reassurance of her femininity. To the cancer patient, the disease is both more and less serious than it is to the healthy. Less so in that it is not the inevitably terminal, incapacitating scourge it is imagined to be; more so in that it pervades every aspect of daily existence more than the healthy seem to realize. The breast cancer patient has an added concern, due to the meaning attached to the breast, and, consequently, its loss: she bears both the stigma of cancer and the image of being preoccupied with the loss of her breast. The fact that breast cancer patients are regarded less as cancer patients and more as ‘amputees’ deprives them of the support they need in order to cope with the ongoing tribulations of their disease. While it is true that the loss of a breast often poses psychosexual problems, mastectomized women identify themselves primarily as cancer patients. Within the group of patients, perspectives seem to evolve with the progression of the disease. Cosmetic concerns diminish, yielding to issues of survival. Recurrence and spread of cancer, and consequences of treatment regimes take precedence over breast loss. In an investigation of women with nonmetastatic disease, Bloom [43] has identified social support as the strongest predictor of adjustment to mastectomy. The results of the current investigation support this observation: although not every patient reporting significant difficulty blamed lack of support, all patients who felt they received ‘inadequate support’ reported problems in adjustment, as well as heightened feelings of stigmatization (expressed as isolation, avoidance, feeling ‘branded’ and ‘abnormal’). Withdrawal of support by family and friends of cancer patients has been widely recognized [ 15,24,3 1,421. Most investigators suggest that this phenomenon is due to the overwhelming stigma attached to the disease. The findings reported here demonstrate not only that expected support networks often fail to materialize, but that the support which is offered is often inappropriate in nature. Patients themselves suggest that this is the result of incorrect assessment of their needs and priorities. Many of these misjudgements arise from the well individual’s focus on breast loss. Cultural values which endow the female breast with enormous social and psychosexual meaning obscure the true issue as identified by patients. Many social scientific investigations of cancer have recognized the preconceptions brought to encounters by disease-free individuals. However, it would appear that most inquiries into the social and psychological correlates of breast cancer also begin with a bias-the assumption of primacy of breast loss. The devaluation of breast cancer as a life-threatening illness may be due to a number of factors: (1) as a ‘woman’s disease’ it may be regarded less seriously; 12) cancer in an organ which is easily accessible and, hence, easily removed may support the notion that it is more easily cured; (3) mastectomy is not incapacitating; it does not result in a limiting physical handicap, as the amputation of a limb or the removal of an internal organ (lung, stomach) might; and, (4) the focus on the breast may serve to detract from the gravity of the illness. The disease-free tend to view all cancer patients as

Breast cancer a homogeneous group. Patients contend that such an outlook precludes the satisfaction of unique support needs which arise at various stages of the disease and treatment regime. Because of the importance of social support in health care, a better understanding of the

short comings of support from the patient’s point of view may facilitate the delivery of more appropriate health care. While problems of recurrence and chemotherapy are addressed in formal support groups and among patients themselves, the public image of the cancer

patient

wide array

has

not

of concerns.

expanded

to encompass

Since healthy

their

individuals-

family and friends--comprise the largest and most important part of the cancer patient’s support network, it is imperative that they be better versed in the patients’ true concerns.

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