Breast Cancer: Psychosocial

Consequences for the Patient

Jean M. Wainstock

HANGES IN treatment and societal attitudes over the past 30 years have made coping with breast cancer a very different experience today. ’ The patient now has more treatment and rehabilitation options, greater participation in decision making, better societal acceptance, and can expect less disfigurement. Consumerism requires physicians to give full information about treatment options and survival statistics. Women now know that no option offers complete assurance of survival and that doctors often cannot be certain which treatment is best.’ Greater use of adjuvant therapies and related clinical trials add further complexity to the treatment. Longitudinal studies are beginning to provide better information about short-term and longterm psychosocial adjustment after primary treatment. The impact of recurrence of breast cancer and issues in advanced disease have only recently become the focus of research in a very limited number of studies.

C

PRETREATMENT

PHASE

Studies indicate that the time from discovery to treatment is the most stressful time for many women with breast cancer.2*3 Eighty-three percent of patients in a descriptive, longitudinal study by Northouse3 indicated that the presurgery phase was more stressful than any other time up to 1 month postsurgery. Factors that contributed to this presurgery distress included a sense of uncertainty, scheduling problems, inadequate information, and the need to make difficult treatment decisions with minimal guidance. Treatment selection is more complex than ever before as the patient is asked to participate. Whether she perceives this as a burden, an opportunity, or something in between may affect her stress level and ability to make a good decision. A multitude of complex treatment choices must be understood: one-step versus two-step procedure (less an issue today than in the past); mastectomy versus lumpectomy plus radiation; immediate versus delayed reconstruction; preoperative or postoperative adjuvant chemotherapy (perhaps on a clinical trial); and the specific tumor features or test results that influence the relative merits of all the options. Seminars

in Oncology

Nursing,

Vol 7, No 3 (August),

1991:

pp 207-215

Deciding on primary treatment usually requires consultations with at least one or more specialists, including another surgeon, a radiotherapist, a plastic surgeon, and a medical oncologist. Scheduling difficulties in obtaining these appointments may create frustration and delay. Second opinions, often required by insurers, may conflict. No studies have yet addressed the impact of conflicting opinions on the decision-making process and psychologic outcome. Anxiety may decrease critical thinking ability when it is most needed. Scott4 studied women hospitalized for breast biopsy before receiving pathology results and again 6 to 8 weeks after receiving biopsy results. Critical thinking and general reasoning ability were significantly lower at the time of biopsy compared with later. Anxiety was extremely high before knowledge of biopsy results, with the group average above norms for acutely ill psychiatric patients. The high anxiety subgroup showed a significant inverse relationship between anxiety and critical thinking, which suggests that this subgroup may have difficulties in decisionmaking in the pretreatment phase. Women who were to undergo breast biopsy were more anxious than those undergoing definitive surgery for diagnosed breast cancer.5,6 Among the group of patients diagnosed with cancer, those with greatest concern about appearance had higher anxiety scores.’ Those patients who chose lumpectomy or immediate reconstruction rated higher on their concern about appearance than those who chose mastectomy, randomization to treatment group, or not to opt for reconstruction. Thus, concern about appearance is a very important consideration in treatment decision making. Most women are able to make a choice regarding treatment once options are explained, although some women will need special counseling.‘.6.7 In a study by Owens et a1,6 6 of 18 women had diffiFrom the Department qf Surgical Nursing, Johns Hopkins Hospital, Baltimore. MD. Jean M. Wainstock, MS, RN, OCN: Surgical Oncology Clinical Nurse Specialist, Johns Hopkins Hospital. Address reprint requests to Jean M. Wainstock. RN. 1422 Putty Hill Ave. Baltimore, MD 21204 Copyright 0 1991 by W.B. Saunders Cornpan! 0749-2081/91/0703-0009U.OOiO 207

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culty selecting a treatment option and found guidance by a clinical psychologist helpful. In another study,7 none of the 22 women who had chosen between modified radical mastectomy(MRM) and breast conservation (BC) wanted the treatment decision to be madewithout her involvement. Half of them wanted the decision to be completely their own, while the other half wished to share it with someoneelse, such as the doctor, spouse,or other family member. Ninety-one percent strongly agreed that they had participated as much as they desired in the decision-making process.They identified “people” information resources (doctor, nurse, family, and friends) as more important than other information resources(media, scientific journals, videotape, and the surgical options comparison sheet). Ninety-five percent agreed they had adequateinformation on which to base their decision. The majority strongly disagreed that they were so distressedat the time of the decision that they had difficulty thinking (64%) and strongly agreedthey had adequatetime to make a decision (77%). Interestingly, a standardapproachto delivery of information and decision-making assistancewas used in this study and could very well be responsible for the overall positive responsesof subjects regarding their decision-making effectiveness.The clinic, surgeon, and two nurseswere also the same for all subjects. Standardinformation included (1) an unbiased surgeon’s description of each procedure; (2) viewing of a videotape; (3) reading of the surgical options comparison sheet; and (4) review and discussion of information with the nurse. Care was taken by the investigators not to express a preferencefor one option over the other. Wilson et al8 also describe an approach using the physician, nurses, and slidetapes on each option in an organized way to facilitate successfuldecision making. Though not written within the context of a study, others have suggestedstrategiesnurses might use to facilitate patient decision making regarding treatment.“” Knowing what factors women consider when selecting therapy allows development of more effective educational materials. Results of two studies7,8showed that women who chose MRM expressed more concern about efficacy and side effects, inconvenience, or disruption of radiotherapy, as well as the uncertainty of whether they would later need a mastectomy. In contrast, women who choseBC were significantly younger.

JEAN M. WAINSTOCK

They reported that their choice was primarily basedon concernsof body integrity and, to a lesser extent, on physician’s or significant other’s opinions, other’s negative experienceswith breastcancer surgery, or vague reasons that were hard to classify. Comparedwith the MRM group, the BC group gave significantly higher importance to three decision-making factors: equal survival rates for the two types of surgery, concern about losing a breast, and the fact that breastreconstruction could be accomplished.7 Ward and Griffin” suggest the need to determine whether patients have understood information regarding treatmentoptions. They describethe development of their Breast Cancer Information Test-Revised (BCIT-R), an l&item instrument to test women’s knowledge of surgical treatment options for early-stage breast cancer. In one study, 26% of women who had lumpectomy did not feel they received adequateinformation preoperatively, especially regarding lymph node removal and its sequelaeand the need for radiation therapy postoperatively. ‘* Knowledge assessmentby the nurse preoperatively with a tool like the BCIT-R could have allowed identification and intervention related to these knowledge deficits. It might even have madea difference in treatment selection by these women. PRIMARY TREATMENT AND RECOVERY

A number of studieshave comparedthe psychosocial impact of mastectomyversusBC.5,‘3-23The majority of studies found no difference between groups in psychologic adjustment (anxiety or depression); however, body image was significantly better in the BC groups.‘3-15917~19921,22 The one exception was the study by Leinster et al5 in which all groups had similar levels of body satisfaction nearly equal to the general population. In this study, women who were not candidates for BC could opt for immediate reconstruction. Levels of sexual dysfunction and marital satisfaction did not significantly differ as a function of type of Thus, BC does not greatly surgery.5,13-15,17,19,23 protect the woman from psychosocial adjustment difficulties except in the area of body image. Study results conflict regarding whether being allowed to choose treatment improves psychosocial adjustment. 5*16,20Although Morris and Royle” found no differences in anxiety or depres-

PSYCHOSOCIAL

CONSEQUENCES

FOR THE PATIENT

sion up to 2 months postoperatively between mastectomy and BC groups who chose their treatment, the mastectomy group who did not have a choice had higher levels of anxiety and depression. However, no immediate reconstruction option was given. Conversely, Levy et all6 attributed greater depression and distress at 3 months postsurgery in a BC group to choice. However, unlike the mastectomy group, this group also reported significantly less social support. They were also treated at different institutions, which might have influenced the differences. Breast reconstruction also impacts psychosocial adjustment. Women who opt for immediate reconstruction report high levels of satisfaction, a return to preoperative sexual functioning (unless they had chemotherapy), feelings of maintained sexual attractiveness and femininity, appropriate anticipatory and actual mourning of the lost breast, and no feelings of deformity or change in style of dress. 24-26Although Leinster et al5 found no differences in body satisfaction between women who chose BC or mastectomy with or without reconstruction, Wellisch et alI4 found that disturbance of body image in women with reconstruction tended to fall between those for BC and mastectomy alone. Future studies should help determine reasons women select a particular reconstructive procedure. The comparative psychosocial impact of tissue expander versus immediately full breast mound-producing procedures, and possible differences in satisfaction, mood, and body image are additional areas for future research. Women who pursue delayed reconstruction tend to have a greater sense of mutilation, are more depressed, and want to eliminate an uncomfortable external prosthesis. 2s After reconstruction, these women report improved mood; decreased feelings of deformity; a return to premastectomy clothing styles and activities; improved sexual functioning, attractiveness and femininity; and tremendous satisfaction.25*27 Demographic and medical variables are related to adjustment. Younger women are more likely to have a greater sense of isolation, anxiety, depression, anger, resentment, sexual problems, and fears of recurrence.28-31 However, advanced disease at diagnosis and radical surgery have strong effects on mental health in women of all ages.29*32 Marital status affects emotional and psychologic well-being. Although married women were less depressed than widowed and divorced women, be-

ing married offered little protection against mastectomy-related concerns.3’ Feather and Wainstock33 found being married had a significant positive relationship to emotional support and aid. Most married women report no marital problems related to cancer and feel their husbands give them as much understanding and affection as they need. Women who do report problems in this area tend to be younger. Emotional support is the type of support most helpful and is positively correlated with adjustment.34 Mood disturbance in response to breast cancer is not likely to reach a psychopathologic level and appears to decrease over time.29,35 Upheavals in emotional, social, and vocational adjustment have been shown to persist for at least 16 months, but long-term follow-up at a mean of 5 years showed no significant difference in adjustment compared with benign disease controls.3s Northouse3 studied mastectomy patients and their husbands at 3 days, 30 days, and 18 months postsurgery. While mood and role functioning improve over time, subject’s levels of distress did not. Thirty-five percent of patients continued to report moderate to severe distress levels at 18 months. At 3 days and 30 days postsurgery, concerns regarding survival are greatest compared with other concems.36 Factors that patients reported helpful to coping were emotional support, religious faith/beliefs, information, positive attitude, distraction, and tangible aid. Nurses should foster these coping strategies to help women in the early primary treatment phase. ADJUVANT

THERAPY

The impact of adjuvant therapies on psychosocial adjustment has not been well studied. The few recent studies that have addressed this issue provide some beginning information about mood, body image, quality of life, and sexuality in women receiving adjuvant radiotherapy or chemotherapy. Radiotherapy A few investigators have recently looked at psychosocial outcomes in women receiving adjuvant radiotherapy for stage 1 and II breast cancer. Hughson et a137compared women receiving no radiotherapy (NRT) with those receiving adjuvant radiotherapy (RT) after simple mastectomy with axillary dissection. The NRT group had stage 1

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disease, while the RT group had stage II disease. Psychologic assessmentof both groups was conducted after surgery at 1 month (but before RT), 3 months (2 to 3 weeks after RT), and 6 and 13 months. Approximately 25% of all subjects were judged as mildly depressedor anxious, but disturbance of a clinical degree was very uncommon. The only significant differences found between groups at any time was greater lethargy, social dysfunction, and somatic symptomsat 3 months in the RT group. Presumably, this was secondaryto the physical effects of RT. Graydon3* studied predictors of coping and emotional distressin 57 women receiving RT after surgery for breast cancer. Variables measuredincluded amount of concern, social support, emotional distress, number of unanticipated events during RT, coping, age, and seriousnessof illness. Data was collected during the first week of RT and 7 weeks after therapy. The only variable predictive of the subjects’ coping after RT was the number of unanticipated events during therapy. The only variable predictive of emotional distress after RT was the amount of emotional distress at the beginning of radiotherapy. Thus, coping and emotional distress after RT were influenced by different factors. A controlled, randomized study by Bridge et a139indicates the efficacy of relaxation and imagery as an intervention for decreasing tension and depression in women receiving RT. Compared with control and relaxation groups, the relaxation plus imagery group had significantly reduced mood disturbance scores. Over the course of therapy, the relaxation group mood scores remained the same, while control scoresworsened. Women over 55 years old received the most benefit. Chemotherapy Several studieshave provided information about the psychosocial impact of adjuvant chemotherapy. Taylor et a13*found that having chemotherapy or radiotherapy had no independenteffects on psychologic adjustment. Those currently on chemotherapy appearedmore poorly adjusted, but controlling for prognosis showed there was no longer a significant relationship. Knobf4’ studied the degreeof physical and psychologic distress and life style changes in 78 women receiving cyclophosphamide, methotrexate, and 5-fluorouracil with vincristine and prednisone (CMFVP) or without (CMF) for stage II

JEAN M. WAINSTOCK

breast cancer. Fifty were currently on chemotherapy, and the other 28 had completed therapy. She found very low depression and anxiety scores in 97% of subjects.Depressionand anxiety were positively correlated with uncertainty of survival, changein appearance,less happy mood, difficulty concentrating, and more worried outlook. Subjects currently on therapy had more physical distressbut only of a mild level. Concern about loss of the breast and survival uncertainty were greater for those who had completed therapy, which may reflect a concern that active measuresare no longer being taken. Indeed, 35% of subjects expressed mixed or insecure feelings about ending adjuvant therapy. Weight gain during chemotherapy occurred in 70% of subjects in Knobf’s study,40with 40% of women being greater than 10% heavier than pretreatment. Reasonswomen cited for this weight gain were depressedmood, decreasedactivity, increased appetite, mild nausea (often relieved by food in the stomach), and taste changes. Those who gained weight were less happy, more worried, and more distressedabout appearancethan those who maintained or lost weight. Feather et a141 noted that appearance satisfaction in working women less than 66 years old tended to be influenced more by postsurgical treatment than by reconstruction, though both variables were significant. They suggest that, in a career context, appearancechangesother than breastloss (such as temporary hair loss or weight changefrom chemotherapy) are likely to be of greater importance and less easily managedor concealed. Investigators have suggestedthat nutrition and weight control counseling should be a part of the care of women receiving adjuvant therapy and have given someguidelines for nursing assessment and intervention. 40,42In a controlled, randomized trial, Winningham et al, 43demonstratedthe ability of a supervisedaerobic exercise program to stabilize body weight and reduce body fat deposition in women receiving CMF or CMFVP. Another effect of aerobic exercise that may moderateweight gain in these women is decreasednausea.44 Love et a145found that the type, intensity, and number of side effects directly contributed to increaseddistressin a sampleof 238 patients receiving chemotherapy, 40% of whom were being treatedadjuvantly for stageII and III breastcancer. The number of side effects was predictive of greater disruption of social life and work, while

PSYCHOSOCIAL

CONSEQUENCES

FOR THE PATIENT

nausea, vomiting, and anticipatory nausea were the most predictive individual side effects. Furthermore, when side effects proved to be resistant to coping efforts, emotional upset and functional disruptions were even more pronounced. Those with higher difficulty, distress, and disruption scoreswere also the ones more likely to consider discontinuing therapy, though they were also unlikely to have told the medical staff. Alopecia can also be a distressing side effect of chemotherapy responsible for decreased body image and selfcathexis.46 While information-seeking as a coping response was not significantly related to mood statesin one study,47this does not rule out the benefit of nursing assessmentand provision of specific information to enhancecoping. Carey and Jevne48describe the development of an information package for postmastectomypatients on adjuvant therapy. Other problems with the effectiveness of communication have beennoted. During initial consultation regarding adjuvant treatment, Siminoff et a149found poor agreementon the estimated benefits and risks of adjuvant therapy between physician and patient. Sixty percent of patients overestimated their rate of cure by 20% or more. Patients have also been shown to underestimatetheir possibility of side effects even when specifically taught about them.46 The degree to which hope influences estimatesof treatment efficacy is difficult to determine and has yet to be studied. Brand?’ found very low levels of hopelessnessin women receiving their first course of chemotherapy. The 2 of 30 subjectswho reported even moderate levels of hopelessnesshad extreme fatigue and pain at the time of data collection. Perceived helpfulness of religious beliefs in coping was related to lower levels of hopelessness,while more external locus of control tended to be related to greater hopelessness. Increased attention is being given to measuring quality of life (QOL) in women receiving adjuvant Levine et al” describe the dechemotherapy.51-53 velopment of the Breast Cancer Chemotherapy Questionnaire (BCQ) to measureQOL in clinical trials. This instrument consistsof 30 questionsthat focus on loss of attractiveness, fatigue, physical symptoms, inconvenience, emotional distress, and feelings of hope and support from others. Unlike other QOL tools used in this study, the BCQ was able to demonstratedifferencesbetweena 12-week and 36-week regimen of adjuvant chemotherapy.

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Measurementof QOL as an outcome of therapy in addition to survival measurementsbecomes increasingly important as more women receive adjuvant therapy for stageI breastcancers,particularly if no significant survival advantage is found between various therapies with significant QOL differences. Packer’* studied 13 women receiving CMF for stageII breastcancer to determine if adjuvant chemotherapy altered QOL. She found no significant decreasein subjects’sperceptionsof activity, daily living, health, support, or outlook; however, prechemotherapy and postchemotherapy total score comparisonsindicated a significant decreasein patients’ QOL while on therapy. Ganz et a153found significant differences in number of psychologic problems, mood states,and several QOL indices between women receiving (n = 20) and women not receiving (n = 30) adjuvant therapy with chemotherapyor hormones. The adjuvant group had more reports of worry about recurrence, anxiety, depression, anger, and being overwhelmed with emotions regarding the cancer. They also had more worry about successof therapy, difficulties with interactions in the health care setting, anxiety having diagnostic tests performed and waiting for results, communication difficulty with doctors and nurses,and concernsabout financial impact. Both groups had concern regarding job performanceand ability to work, with one fifth of each group having difficulty communicating with their boss or coworkers about their cancer diagnosis and treatment. The adjuvant therapy group had more mood disturbance compared with the no treatment group. Both groups reported similar precancerQOL on a linear analog scale, while current visual analog QOL and Functional Living Index-Cancer (FLIC) scores were lower for the adjuvant group. However, FLIC scoredifferences were minimal except on three items: maintaining usual recreation/leisure activities, nauseaaffecting daily functioning, and nauseaduring the last 2 weeks. Findings of this study must be interpreted cautiously. While the treatment group included both stage I and II patients, women in the no treatment group all had stageI disease.Thus, someadjustmentdifferences could have been due to poorer prognosis, as was found in another study.3’ Few studies have addressedthe impact of adjuvant therapy on sexuality. In Knobf’s study, 76% of subjects receiving CMF or CMFVP reported

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JEAN M. WAINSTOCK

mate role disturbance.40Fifty-six percent of premenopausal women and 41% of postmenopausal women reported decreasedfrequency and quality of sexual relations. Seventy-two percentof the premenopausal subjects had menopausal symptoms, and more of thesewomen reported changesin sexual relationships compared with symptom-free subjects. The likelihood of premature menopauseand the probability that it will be permanentincreasesafter ages35 to 40 years.54Due to symptomsof ovarian failure, women with premature menopause may experience decreaseddesire and arousability, dryness and a diffuse, burning pain with intercourse, and vulvar/vaginal soreness and light spotting Since estrogenreplacementto comafterward.54Y55 bat menopausal symptoms is usually contraindicated in women with breast cancer, nonhormonal agentsto treat hot flashes and lubricate the vagina during intercourse should be encouraged. RECURRENCE

Few studies have addressedthe psychosocial impact of recurrence. Only one study by Silberfarb et a15’ included only women with breast cancer. However, Weisman and Worden found no correlation between type of cancer and level of distress at time of recurrence. Therefore, until further disease-specific information is available, the following general findings should be considered when working with women experiencing breast cancer recurrence. Study results conflict regarding the relative impact of recurrenceversusprimary diagnosis. While some study findings indicate recurrence is more emotionally distressing than advanced disease or initial diagnosis, 57Y59Weisman and Worden5* found no difference between recurrenceand initial diagnosis distress levels. Risk factors for greater distressat time of recurrence include (1) more medical symptoms, physical disability, and illness-related confinement; (2) less social support from family and significant others; (3) more concurrent concerns; (4) younger age; (5) more pessimism; (6) less hope for recovery; (7) more surprise about recurrence; (8) desire to give up; (9) more concernsabout death; and (10) less religious, with no belief in an afterlife.58*60 Two descriptive studies provide additional information about the experience of recurrence.59’61

Chekryn studied the psychosocial meaning of recurrence to the marital dyad.61She found that recurrenceposedcertain individual and family hardships, including difficulties with closure; uncertainty; grief; feelings of injustice, fear, and anger; existential concerns; concern with coping; family impact; and the absence of a communicated, sharedmeaning betweenpatient and spouse about the recurrence. Many subjects said they did not talk about the recurrence with their spouse, though a lack of communicated shared meaning was not related to marital dysfunction. Findings from a second study are even more revealing.59Seventy-eight percent of subjectssaid the recurrence led to fears of physical limitations, although only 6% of them were actually experiencing any. Over half of the patients reported decreasedfamily supportiveness.They attributed this to new problems since initial diagnosis or to increased family member fearfulness about death, which interfered with their ability to effectively help the patient. Seventy-eight percent said recurrence was more upsetting than initial diagnosis for the following reasons:greaterthreat of death, more difficult treatment decisions, more severe side effects, greaterfear of uncontrollable pain, and more fatigue. Many patients reported dissatisfaction or anger with primary treatment choices, and all but one patient reported being much less hopeful. The majority (85%) statedthat their religious activities and participation were a major source of support since recurrence. However, 45% of subjects perceived cancer as some form of punishment. Averagepsychosocialconcern scoreswere significantly greater than norms for patients with cancer, particularly concerns about anxiety, depression, and fears of unattractiveness. The majority (>80%) experiencedintrusion of unwanted thoughts about the recurrence and often tried to avoid talking about it. However, patients also stated that caregivers usually inappropriately assumedthey had adequate support, were coping better than they were, and had knowledge about diseaseand treatment that they did not possess.Both Mahon et al59 and Chekry# noted that subjectswere willing to sharetheir experienceswith high levels of disclosure and found the processof discussing their concernswith someoneoutside of their family helpful. Acknowledging the normalcy of these mixed feelings aboutrecurrencecould help patients who have difficulty initiating these discussions.

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FOR THE PATIENT

213

ADVANCED DISEASE

The psychosocial impact of advancedbreastdisease is probably similar to that of other types of advancedcancer, A complete review of this literature is beyond the scopeof this article. However, results of a few studies provide particular insight into the advanced breast cancer experience and ways nurses might facilitate coping. Silberfarb et alJ7 found that women with advanced breast cancer receiving chemotherapy had less depression and anxiety than those with primary or recurrent cancer. They also had a low incidence of social isolation and impairment in daily routine; however, physical dysfunction did increaseas the diseaseadvanced.In addition, 3 1% reported decreasedsexual desire and frequency of coitus. In another study, women with advancedcancer ranked fear of cancer diagnosis and progression, restrictions on activities, and side effects of treatment equally as their number one problem related to their cancer.62Worry about their family’s future and general emotional disturbance were ranked fourth and fifth, respectively. The most prevalent coping strategy usedwas taking actions that would help others cope after they died, such as fostering independencein children. Other prevalent coping

strategies included talking to oneself, praying, having faith and hope, talking to others, living for today, and finding something meaningful about the situation. Lewis63 found that advanced cancer patients who were able to derive meaning and purposefrom their situation had greater self-esteem and were less anxious than other patients, She suggeststhat meaning and purpose are important targets for nursing intervention. In a study by Spiegel et al,@ women with metastaticbreastcancerrandomized to weekly support group meetings had less mood disturbance, fewer maladaptive coping responses,and less fear than controls. Groups focused on problems of terminal illness, including improving relationships with family, friends, and physicians, and living as fully as possible. CONCLUSION

Findings from the studies cited above suggest the importance of nurses helping women with breastcancer explore and deal with fear of disease and progression, control symptoms, identify and use more effective coping strategies, develop a senseof meaning and purpose, and develop more effective communication with family and others.

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CONSEQUENCES

FOR THE PATIENT

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