A number of important social and medical changes have occurred that have resulted in dramatic changes in the way cancer in general, and breast cancer in particular, is viewed by the public. Primary among these has been growing attention to the patient’s role in decision making across the course of care. In contrast to an earlier period when there were fewer treatment options, less shared decision making, and broader use of “one-step” procedures, today women with a diagnosis of breast cancer are aware of the plurality of views about primary breast cancer treatment. In 18 states, laws require the surgeon to inform a woman that she has the option of a two-stage surgical procedure (separating her diagnostic from her definitive surgery) and to discuss two treatment options of mastectomy or lumpectomy with irradiation (6). How or the extent to which this is done varies widely by state and by clinical practice. However, research suggests that these laws make a difference. In those states that mandate such information, more women receive breast conservation (7,8).

Women recognize, or come to learn, that there is no “best” treatment in some cases, but that they have options and that personal preference may be an important factor in selecting care. The vast majority appreciate the opportunity for open dialog with their surgeon about disease management, as well as the care and respect afforded them through participation in this process. These conversations often help reduce a woman’s anxiety about treatments proposed. However, because important information may be missed or processed differently, most information should be conveyed in a variety of ways (e.g., verbal, written, audiotaped, or videotaped) and repeated as necessary. Encouraging women to become more informed about their options can also help them plan better for their needs and ultimate recovery. There are nevertheless two potential down sides to these otherwise beneficial changes. The first is a
sense of increased psychological burden of responsibility and concomitant anxiety for women about making the “right choice.” Women often talk about their experience as one in which they believed they “had to become a breast cancer expert overnight.” Some women when faced with their diagnosis become emotionally paralyzed. They are overwhelmed by the knowledge that they have breast cancer and by its potential threat to life. These women benefit from referral for psychiatric consultation.

The second limitation to the new era of shared decision making is the possibility that in seeking additional opinions and information, a woman may receive conflicting recommendations. This may leave her with the difficult task of deciding which physician she trusts and which treatment plan to accept; meanwhile, considerable time can be lost. For surgeons who see a patient who has visited multiple other consultants, it may be important to help set a limit on further information gathering. This can be done very concretely by recommending that she set a date after which to stop her search, or by which time she should be scheduled for surgery. Referral for counseling around decision making can also be helpful in these situations.

During the diagnostic workup period, the woman must cope simultaneously with the need to keep her distressing emotions of anxiety and fear within tolerable limits while making the difficult decision about treatment for a potentially fatal disease. To accomplish this, she must assimilate new medical information that, in itself, produces anxiety. One study has shown that before and after breast biopsy, anxiety and information overload compromise some women’s decision-making ability, making informed decisions difficult at best (9). Valanis and Rumpler noted that a woman’s previous experiences, her personal and demographic characteristics, and those of her social support network (family and friends) and her physician influence her treatment selection (10). Research and clinical observation indicate that the time between diagnosis and initiation of treatment is the most stressful period in the breast cancer experience; this is followed closely by the experience of waiting for surgical or other test results.

More recently, a number of cancer centers across the United States, including Georgetown’s Lombardi Cancer Center, have developed multidisciplinary breast clinics to address the need for women to seek opinions from diverse specialists. In these centers, women are usually seen after their initial biopsy and meet with a surgeon, medical oncologist, and radiation oncologist, and, in some centers, other breast specialists, including a pathologist, radiologist, plastic surgeon, mental health professional, and clinical research nurse. The concept behind this one-stop visit is to provide the woman with information about all treatment options in a comprehensive setting and to outline treatment that can be tailored to her specific cancer and personal needs. Clinical experience suggests that such programs are helpful in reducing the stress experienced by women around decision making and facilitating information gathering.

Although many women report decision-making as highly stressful, research indicates that women who are given a choice about treatment do better than those who are not (11,12,13,14). In addition, involving a husband or partner in the process appears to be helpful for subsequent adaptation of both (15). Other studies have reported that the quality of the physician–patient relationship is an important determinant of later psychological well-being in patients with breast cancer (16). Finally, although the majority of women faced with cancer want to have information about illness, not all women want to make the final decision about treatment (17). There is considerable demand on surgeons to be able to recognize these individual differences, and to tailor any discussion and recommendations to meet each patient’s needs. At times, this may mean tempering a woman’s demands for unrealistic treatment, agreeing to another’s desire to defer her decision to the physician or a loved one, or in some cases, reassuring a woman that she has time to review her options and make a decision that is best for her. A broader review of women’s response styles and physician–patient communication is provided elsewhere (18,19,20,21).

Each woman brings her own personal history and expectations, repertoire of coping skills, and supportive resources to the illness experience. Coping style tends to be a very stable characteristic within each individual. A quick, and often insightful, way to assess how a given woman will respond to the crisis of breast cancer is to ascertain how she has managed stressful situations in the past. Although coping has a traitlike quality, new coping skills can be learned if old or usual ones prove maladaptive. Many of the interventions that have been developed
to help women adjust to breast cancer include training in active coping.

Studies of patients with breast cancer suggest that women who use an active, problem-solving approach to the stresses of illness exhibit less distressed mood and better adaptation (22,23). In addition, because adaptation to illness is necessarily a dynamic process, those who exhibit flexibility in their efforts cope better. For example, Glanz and Lerman noted that although information-seeking and problem-solving skills may be critical during treatment planning, use of denial and avoidant coping strategies during active chemotherapy or radiation may be more helpful in reducing or minimizing treatment side effects (4). The relative efficacy of each style thus may be situation specific (24). Finally, women who are able to draw on and use available social resources and support adapt better as well (25,26). In contrast, women at risk for poor coping are those who exhibit a passive, helpless, hopeless, or pessimistic stance in the face of illness, are rigid in their use of coping strategies, and tend to be socially isolated or to reject help when offered. Further studies suggest that women who exhibit a pattern of active, “fighting spirit” to their disease not only have better quality of life, but may also survive longer than women who appear to “give up” (27).

In the context of any discussion of coping responses, it is important to note that the relationship between attitudes and cancer survival, as well as risk, has become a growing area of public interest and psycho-oncologic research (28,29). Because breast cancer is a prevalent neoplasm and one with great psychological impact, the possible role of psychological variables in risk and survival has been explored extensively. The question of a potential role for emotions in vulnerability to breast cancer and its progression has received much attention in the public press. Many women express concern that they “brought it on themselves,” or that their attitude is bad and that they or their lifestyle may be making the cancer worse. In a study of what women attributed to having caused their breast cancer, Taylor et al found that 41% of their well-educated sample believed they were responsible for the development of the disease and that stress was a major contributor to its development (22). In our own research at Georgetown University among women 4 to 12 months posttreatment for node-negative breast cancer, 44 of 151 women interviewed (29%) indicated that they believed stress and/or emotions contributed to their illness; 21% believed such factors played a major role in disease onset (30).

The belief that they may be responsible for their own illness and its outcome has become an added psychological burden for many women with breast cancer. Indeed, it is a hazard for those who, based on these beliefs, seek questionable and unproved therapies as primary treatment for their breast cancer, either never starting or discontinuing conventional treatments. Publication in the public media of early and controversial findings about emotions in breast cancer is a growing concern. For these reasons, it is important that surgeons are familiar with the status of psychological research in breast cancer risk and survival to answer their patients’ questions on the subject and provide clarification and reassurance.

An important mediator of coping is access to social support. Considerable literature now exists documenting the stress-buffering and health-promoting effects of social support (31,32,33). A number of studies have been published that document the role of social support in recovery from cancer in general, and breast cancer in particular (25,34,35). It is our clinical experience that few women manage the crisis of breast cancer in isolation; of those who do, the outcomes tend to be more problematic. Just as most breast cancers are treated by a clinical team, the woman is expected, and needs, to have her own social support team. Furthermore, it can be expected that support needs will vary across the course of illness and in relation to disease stage and treatment. Assessing the availability and adequacy of this network early in the course of care and at regular intervals thereafter is important. Because of their particular role in women’s adjustment, the impact of breast cancer on partners and family is discussed in greater detail later in this chapter.

A woman’s past experience with breast cancer may also be a powerful mediator of coping. The memory of the death of a mother, sister, or favorite aunt from breast cancer, or that of a close friend, makes the diagnosis seem far more ominous and may result in greater levels of psychological distress during and after treatment. In contrast, the woman who has seen others do well with this disease may face her own diagnosis with less alarm. Some women with a high investment in their bodies cannot tolerate even the idea of loss or damage to a breast. Such women are at risk for delay in seeking consultation when a symptom occurs; they may also be at risk for problems in adaptation after treatment, particularly if hoped-for attempts to preserve cosmetic appearance are less than expected or must be abandoned due to the extent of the disease.

Finally, the point in the life cycle at which breast cancer occurs and the social tasks that are threatened or interrupted are of prime importance. Concerns about the threat to life and future health, as well as fears of potential disfigurement, disability, and distress associated with treatment, are common to all women faced with a diagnosis of breast cancer. However, these may be more pronounced in younger women (36). Mor et al identified several factors that may put younger women at greater risk for problems in adapting (37). These include the “off-timedness” of a cancer diagnosis in someone younger; disruption of primary role as a caregiver and, increasingly, “breadwinner”; and their perception of having more to lose, including career advancement, the chance to see children grow up, or the attainment of hoped-for activities (e.g., retirement, travel, home ownership, additional education). Some researchers have suggested that the older patient may experience less distress due to greater familiarity with medical settings (38). With increasing numbers of women reaching older ages with less hospitalization or serious illness history, this pattern may change. At the other extreme, breast cancer in the woman older than 70 years of age may be experienced in the context of other major life changes (e.g., retirement, relocation, death of spouse, serious comorbid illness) that can compromise adaptation. In addition, one more recent report suggested that older women are significantly less likely to receive appropriate surgical care or rehabilitation (39). Thus, women at both ends of the developmental spectrum are at particular risk for psychosocial problems in adjusting to cancer. Although the threats to body image, sense of femininity, and self-esteem may be greater in younger women, particularly those who are single or without a partner, it is important to note that these threats also may be concerns of older women. This is increasingly the case as our population of “young old” grows.

What is clear is that prolonged anxiety or depression is not an expected reaction to a cancer diagnosis (40). The common stress reactions that accompany diagnosis and initiation of treatment can be readily evaluated and managed by the surgeon, nurse, or designated cancer counselor. However, when
these symptoms persist, or other psychological risk factors are present, referral for psychiatric or psychological consultation is helpful. These include a history of anxiety or depressive disorder, substance abuse, or other mental illness; history of sexual abuse or assault; inability to make a treatment decision; conflict with staff or inability to comply with hospital rules; or presence of additional major stressors (e.g., significant marital or parenting problems, recent losses, pregnancy, strong family history of breast cancer). Although rarely encountered in the evaluation and treatment phase, if suicidal thinking is expressed, a formal psychiatric evaluation should be requested.

The stage of breast cancer at diagnosis, the treatment required, the prognosis, and the rehabilitative opportunities available constitute the medical variables that influence psychological adjustment. Key among these is a woman’s relationship to a supportive surgeon or primary care physician. It is important to recognize that the surgeon’s recommendation continues to play a critical role in a woman’s choice of local treatment. Furthermore, although many women will see multiple providers in the course of their cancer care, most women are followed by a surgeon. Many women report that follow-up visits with their surgeon are among the most reassuring. Both the greater duration and intensity of treatments, and the recognition that women treated for breast cancer must be followed for life, have placed an added burden on physicians, who are expected to provide support across the course of care, often involving years of follow-up. In this new era of extended care, the office staff, clinic nurse, and treatment team often become the patient’s “second family.”

Changes in the approach to breast cancer treatment and rehabilitative options over the past 15 years have changed the experience of women so substantially that the extensive literature on adjustment to mastectomy, particularly radical mastectomy, applies to a far lesser degree. Rather, the focus is increasingly on research around recovery from more limited surgery and mastectomy with reconstruction. Reactions to each of these are discussed in greater detail.

Because it was for so long the standard treatment for breast cancer, and still continues to be recommended for large numbers of women, there is considerable research on the impact of loss of one or both breasts on women’s physical, social, and emotional functioning. Among the effects documented are feelings of mutilation and altered body image, diminished self-worth, loss of a sense of femininity, decrease in sexual attractiveness and function, anxiety, depression, hopelessness, guilt, shame, and fear of recurrence, abandonment, and death (2,41). Although mourning the loss of a cherished body part and the threat to life are universal, the extent to which other sequelae are experienced varies. Early research indicated that 10% to 56% of women studied 1 to 2 years after mastectomy experienced some degree of social or emotional impairment (42,43). However, a large prospective study found that women who are well adjusted before they have a mastectomy and whose disease is in an early stage can expect at 1 year to have a quality of life equal to unaffected peers, a finding since replicated in other controlled studies (44,45). In addition to more advanced disease, other predictors of poorer adaptation in this study were additional concurrent illness or stress, expectation of poor support from others, and a tendency to perceive events in life as less under one’s own control. More recently, research suggests that although most women report improvement in emotional and physical well-being over time, for a significant minority (20% to 25%) problems may persist beyond 2 years posttreatment (46). Many of these problems relate to difficulties with body image and sexual functioning. Missing in most longer-term follow-up studies, however, has been reference to a control group of healthy, age-matched controls. In one study that included a group of women who had not experienced a mastectomy, researchers found that body image, total self-image, and self-esteem scores were actually higher in women postmastectomy with or without reconstruction than in the control group (47). These data underscore again the generally high level of adaptive coping observed in women after treatment for breast cancer. They also emphasize the need to control for population differences across the developmental spectrum in interpreting the impact on psychosocial and physical well-being of any illness state.

There has been a dramatic shift away from more radical surgical approaches to breast cancer based on scientific evidence that systemic versus more extensive local management therapy was more critical to survival (56). This also has been advanced by the hope that, by sparing breast tissue, much of the psychosocial morbidity associated with the disease could be reduced. Since 1980, more than 36 studies have examined the differences on social, emotional, and sexual functioning among women undergoing mastectomy or breast-conserving therapy (BCT) (57). Despite the variability in methods used, the early pattern of results was very consistent: women who underwent breast-sparing surgery were less self-conscious, had a better body image, reported greater satisfaction with sexual activity, and manifested a somewhat better overall adjustment (58,59,60). In contrast to women undergoing mastectomy, women in the conservation group believed they were less sexually inhibited, had sex more frequently, and reported that their husbands were more sexual and affectionate.

Although the overall data suggest that women undergoing BCT have, as a group, adapted well (61,62), three important criticisms have been leveled at this research. First, most of these studies evaluated women within the first year and often the first few months of their treatment. Thus, it was not known whether these early differences were sustained over time. Indeed, there is some evidence to suggest that women in the conservation group fare no differently from (63,64,65) or may do worse than their mastectomy peers in the long term (66). Second, in the majority of the studies conducted, women undergoing each option were self-selected, raising concern about potential presurgical differences or selection bias. The few exceptions to this include studies by Schain et al (59,67), de Haes and Welvaart (68), Fallowfield et al (69), and Lasry et al (70). In each study, the women were randomized to undergo either mastectomy or limited resection and radiation. The data of Schain et al and those of de Haes and Welvaart indicated more positive feelings about body image among the lumpectomy and irradiation group, but little difference with respect to the other parameters measured. In contrast, Fallowfield et al found no significant differences between the groups; if anything, the lumpectomy group appeared to do somewhat worse. The Lasry et al data fell in between: patients who underwent lumpectomy had a better body image than did those who underwent mastectomy, but the women who received irradiation exhibited higher levels of depression. A further, or third, confound to interpretation of the results of published studies is that younger women, already at increased risk for psychosocial problems in adaptation to breast cancer by virtue of age and developmental stage disruption, tend to select breast conservation.

Given the expected dramatic emotional benefit that saving the breast was expected to provide women, the differences seen are less than might have been predicted (71,72). In some cases, although statistically significant, the differences observed do not appear to be clinically significant. It is important to be aware that breast conservation is not a psychosocial panacea (66); rather, it serves to provide a woman with options in her care that may facilitate her particular adaptation.

Two critical factors that continue to influence surgical decision making are attitudes about cancer and radiation exposure. The thought of leaving tumor cells in the breast is intolerable for some women who feel more secure with mastectomy. Other women fear radiation or are unable to devote 6 to 7 weeks to daily radiation therapy treatments due to competing financial, family, or work demands or distance from a treatment center. Personality characteristics also influence a woman’s decision. Women selecting BCT over mastectomy have been found to be more concerned about insult to body image and more dependent on their breasts for self-esteem, and they believed they would have had difficulty adjusting to loss of the breast to mastectomy (11,73,74). In contrast, patients choosing mastectomy perceived the breast containing cancer as an offending part that should be removed, and they were more fearful of the side effects of radiation. Although it has been suggested that older women may be more likely to select mastectomy (74), there is some concern that this may reflect as much a bias in the provision of treatment options as personal preference (75). Although it is not clear what percentage of women nationally are offered a choice, figures suggest that approximately 50% of women with early-stage breast cancer undergo breast conservation (76). However, this may be an underestimation of the true proportion receiving BCT currently. Furthermore, both the increasing diagnosis at all ages of early-stage and in situ disease due to broader use of screening mammography, and the growing use of neoadjuvant or preoperative chemotherapy will likely increase the numbers of women who are candidates for and undergo BCT in years to come.

It is important to remember that it is only in the past decade that American women have routinely been given a choice between lumpectomy and mastectomy; even today this is mandated by fewer than half the states. Frustratingly little is still understood about how women make their decisions. It is likely that a significant proportion of decisions are made on the nature of the care that is available (7,8,39). For women diagnosed in communities that are removed from major medical centers, mastectomy may simply be a more practical and safer treatment choice. Another deciding factor may be the availability of high-quality radiation therapy. Restricted access to implants and to plastic surgeons having extensive experience with transrectus abdominus myocutaneous (TRAM) flap reconstruction has
already limited the availability of reconstructive options. Cultural and ethnic values may also direct or even dictate choice, although the role of these values is poorly understood. All these issues warrant further research.

Clinical experience indicates that many women who are treated by breast conservation may not feel the emotional effect of the experience until they begin the daily routine of radiation therapy. Spared the loss of their breast, these women often believe they should be grateful and not complain. They also may experience themselves as more fortunate than their mastectomy peers. There is evidence that women receiving BCT elicit, or at least perceive themselves as receiving, less emotional support from others than women undergoing mastectomy (66). Some of these women may react with distress only when the radiation begins, with its attendant daily visits to the clinic, placing of permanent tattoos, exposure to others with cancer, and experience of treatment-related symptoms. The realization of what they have gone through can overwhelm women during this sensitive period. Research has shown that women undergoing radiation are at higher risk of psychological disturbance than has been assumed, particularly depressive symptoms (70,77). Although these may be due to the side effects of radiation, which may vary widely in the degree of discomfort and fatigue produced, mood states need to be monitored. Physicians and staff should be aware of these delayed reactions because they too may perceive these women as having less severe psychological trauma.

Women undergoing radiation therapy experience initial anxiety, which is usually allayed after a few treatments. It often returns, however, as the end of treatment is approaching because of fear of regrowth of the tumor without treatment, as well as in anticipation of the loss of close observation and frequent visits with the doctor and staff. To ease the transition, patients should be made aware of when treatment will end and the common paradoxical increase in distress. Reassurance should be provided about staff availability by telephone contact and by systematic scheduling of follow-up appointments. Fears of disease recurrence remain high in many women and reach distressing levels before follow-up visits and scans and while waiting for test results. Anxiety returns to usual levels with news of normal findings.

When discussing women’s reactions to radiation, one additional important factor to consider is the risk for lymphedema. The proportion of women affected by this problem has decreased dramatically, largely with the use of less radical nodal dissection practices and routine encouragement of arm rehabilitation exercises and skin precautions. Although certainly less common than only 20 years ago, risk of lymphedema remains a problem for some women after treatment for breast cancer (78). Women undergoing radiation and surgical resection of axillary lymph nodes are at highest risk for developing upper extremity lymphedema (UEL) (79,80,81). These problems can occur immediately posttreatment or several years later (82). The actual proportion of women who will develop UEL remains unclear, with estimates ranging from as low at 4% to as high as 72% (83). For women who develop this problem, the impact on emotional, social, and physical functioning can be profound. The few studies examining psychosocial functioning in this area report high levels of anxiety, depression, social inhibition, sexual dysfunction, and disability (83,84,85,86). In at least one study, no association was seen between severity of UEL, duration, and psychological distress (83). However, variables that have been found to increase a woman’s risk for problems in functioning include pain, lack of social support, and avoidant coping. In addition, women with UEL in their dominant hand tend to have more difficulties than women whose nondominant arm is affected (83). For women who develop arm swelling as a problem, prompt intervention that includes not only physical rehabilitation but also education, consideration of pain medication, emotional support, counseling, and, as appropriate, referral for sexual counseling is warranted.

The U. S. Food and Drug Administration hearings, opened in November 1991, on the safety of silicone gel-filled breast implants brought to the attention of the public and the medical community several important questions: how many women seek implants, what are the benefits of their use, and what are the medical risks associated with these devices? These questions were no more keenly felt than among the estimated half a million breast cancer survivors with implants. Winer et al, in a study conducted in the wake of these hearings, found that 55% of women who had undergone breast reconstruction with silicone implants in an earlier period (1985 to 1990) were worried about the safety of these devices (87). Importantly, however, 76% of these women also reported that reconstruction was important in helping them cope with their cancer.