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Background: The majority of older (aged >=65 years) women diagnosed with breast cancer are in the early stage. However, little is known about older women's posttreatment concerns in the early stages of survivorship.
Objectives: The purpose of this study was to describe posttreatment-related concerns of older, early-stage breast cancer survivors.
Methods: Fifty older women who completed treatment for early-stage breast cancer participated. Participants were interviewed within the first year since diagnosis. Content analysis was used to analyze transcripts about concerns after treatment.
Results: Older women experienced treatment-related adverse effects, but often discussed non-cancer-related concerns as being more pressing than concerns from breast cancer. Older women accepted treatment-related adverse effects as part of life and often attributed adverse effects to causes other than breast cancer. Older women also engaged in "compartmentalization," in which they separated past cancer experiences from everyday life.
Conclusion: Non-cancer-related concerns often overshadowed concerns from having had breast cancer. Compartmentalization was used to cope with cancer as a past, not current event.
Implications for Practice: New insights on how older women view their disease after treatment can guide nurses in educating older breast cancer survivors about treatment-related adverse effects.
The risk for breast cancer increases with age, and most women are diagnosed with breast cancer after age 61 years.1 The majority of these diagnoses will occur prior to metastasis, ensuring survival rates near 98%.1 The number of women with breast cancer is expected to increase as the baby-boomer generation ages, making survivorship and quality of life (QOL) in older (aged >=65 years) women with early-stage breast cancer a particularly important topic to study.
Compared with their younger counterparts, older survivors have been shown to be more accepting of a diagnosis of breast cancer, reporting significantly less psychological cancer-related distress.2,3 Older women also seem to quickly integrate having had cancer into their lives.4 These findings are interesting, given that survivorship after cancer treatment has been documented to include declines in physical functioning,5-8 cognitive functioning,9 mental health,7 and overall QOL3,10,11 in older women. These reports of declining health and overall QOL are consistent with findings that older breast cancer survivors report significantly more physical problems such as fatigue, pain, and sleep changes compared with their younger counterparts.3
Despite these reported declines, older breast cancer survivors report remaining active after treatment and experiencing little alteration in lifestyle.12 Study findings also indicate that older women experience illness and adverse effects differently from younger women because of age and other comorbidity.13-17 In addition, older women tend to attribute their symptoms to causes such as aging and other chronic illnesses instead of breast cancer.2,18 This attribution may be correct as older cancer survivors report similar changes in functioning after cancer treatment as do their noncancer peers.19
Differences in symptom attributions and expectations may impact the efficacy of interventions to improve QOL in older breast cancer survivors. Few intervention studies have focused specifically on older survivors.20 Most studies designed to decrease or manage symptoms or improve QOL target a broad age range of women and typically lump together the responses of older and younger women.21-24 However, generalizability of findings from intervention studies with a mean age in the 50s cannot be assumed. For example, a secondary analysis of a successful psychoeducational intervention to improve QOL in breast cancer survivors revealed that QOL in women 65 years or older slightly declined despite intervention.10 This suggests that older women's concerns after treatment were not addressed during the study.
Research about older, early-stage breast cancer survivors' concerns after treatment is needed to explain why older women experience declines in health, functioning, and QOL, but report little distress related to these issues. This study addresses this need by investigating the posttreatment concerns of older, early-stage breast cancer survivors. Information from this study provides information for developing relevant interventions to improve health, functioning, and QOL in older survivors.
Content analysis was used to examine transcripts from interviews conducted with older breast cancer survivors. Fifty women were asked about their life after treatment for early-stage breast cancer. Women were encouraged to discuss cancer-related concerns such as lingering treatment-related adverse effects and other events or experiences in their life that were a concern for them at the time of the posttreatment interview.
Institutional review board approval was obtained prior to beginning the study. Participants were recruited from a community cancer center in the southeastern United States. Older women with breast cancer were screened and approached by the center's research nurses and given an informed consent form to review. If interested, they were contacted by the principal investigator and enrolled prior to the interview. Informed consent was obtained prior to any data collection. No incentives were given as part of this study.
The average age of the participant was 72.1 years (range, 65-83 years). Most women were white (82%), spoke English (87.5%), and had at least a high school/trade school education (96%). More than half of the women were married (56%), and 66% lived with at least one other person in the household. Most women (84%) were not employed. Half of the women reported an income of $30 000 or less. Disease-specific variables indicated that 70% had stage I breast cancer. Most received a lumpectomy (72%) and radiation therapy (78%) and did not receive chemotherapy (82%). The majority (84%) were on hormonal therapy at the start of the study.
Semistructured interviews using open-ended questions were used to gather information about how older women treated for early-stage breast cancer viewed their life after treatment. Three main interview questions were asked of all participants during the initial interview: (1) Describe any adverse effects you have had since treatment; (2) Describe how your life has changed since having been diagnosed with breast cancer; and (3) What are you most concerned about now that treatment has completed? Probing questions were tailored and asked of each participant to elicit more information during the interview. Five different research nurses conducted the interviews. All initial interviews took place, on average, 8 months after diagnosis and were conducted in the participant's homes. Participants were later given the opportunity (through follow-up phone calls) to update or add information about adverse effects, life changes, and concerns at 3 and 6 months after the initial interview. Each initial interview lasted approximately 1 hour. Follow-up phone calls lasted from 5 to 20 minutes.
Content analysis of the data was based on a systematic process.25 First, all transcripts were read thoroughly prior to coding to gain an overview of the quality and content. Second, data were reread, and codes were generated using language closely reflecting the language used in the transcript. For example, if the transcript stated that the woman experienced a particular adverse effect or was concerned about an ill family member; data were coded as "adverse effect" or "ill family member," respectively. Third, these codes were defined and grouped according to similarities. This third step resulted in the final coding scheme.
As evidence of data confirmability, a colleague reviewed 5 randomly selected transcripts. The colleague was a professional nurse for more than 20 years and a doctoral student with experience in qualitative methods. Her research focuses on women with chronic illness, and she has no oncology experience. After explaining the aim of the analysis, the doctoral student was asked to review the transcripts and identify themes. Next, the investigator and doctoral student compared the themes they derived independently and discussed them until they reached consensus. For example, a participant had a daughter with breast cancer. The investigator coded the theme as "daughter with breast cancer," and the doctoral student coded the theme as "daughter illness." These codes were determined as consistent.
It is clear that breast cancer was not the only focus in the lives of older, early-stage breast cancer survivors after treatment. Although the women acknowledged lingering symptoms, adverse effects, and problems related to having been diagnosed and treated for breast cancer, they also reported a multitude of problems that were unrelated to cancer. Most non-cancer-related problems were durable over time. Some of these ongoing non-cancer-related problems were more typical of older women. Older women were willing to dismiss cancer experiences, including ongoing symptoms and adverse effects from cancer treatment, and either accept them as "part of life" or attribute them to everyday problems they felt were not related to cancer. Content analysis of the transcripts also depicted a coping strategy, which we term compartmentalization, which involved separating cancer experiences from everyday life. The only cancer-related concern that was not typically taken in stride was fear of cancer recurrence.
Cancer-related concerns included multiple treatment-related adverse effects which were accepted as a part of life and, for most women, fear of recurrence. As will be explained below, these two positions, acceptance and fear, coexisted in most women. When fear of recurrence was notably absent in what could be considered a fear inducing situation, the lack of fear appeared to be another manifestation of acceptance.
Older breast cancer survivors experienced numerous treatment-related adverse effects and cancer-related concerns. Treatment-related adverse effects included fatigue, pain, sleep disturbance, hot flashes and other menopausal sequelae, continued nausea, weight gain, limited range of motion and mobility, lymphedema, confusion and other cognitive changes, altered body image and sexuality, and negative mood states (eg, anxiety, depression, irritability, and uncertainty). Other cancer-related concerns included worry about how health status would affect finances (eg, insurance coverage, ability to work) and questioning why cancer had happened to them. The prevalence of these topics during discussion was not surprising, given that women had recently completed treatment and were being asked questions about specific adverse effects they experienced.
More noteworthy than the discussion about cancer-related concerns, however, was that there was limited mention of the women being bothered or distressed by the symptoms and adverse effects. Rather, most of the women qualified their reports of cancer and cancer treatment-related adverse effects with statements that they expected to "live with" or take the symptoms and adverse effects "in stride." Also of note is that some women were not taking action to manage the adverse effects because they believed the problems were "not severe" or were a "part of life." Even the women who described frequent (eg, "occurring all the time") and therefore presumably bothersome symptoms indicated acquiescence.
Another factor that helped older women accept adverse effects as part of life was their ability to "compartmentalize" common breast cancer sequelae from their daily life. Many older women seemed to cope with their cancer by putting it behind them and not recognizing current adverse effects and concerns as being related to their past cancer. Older women went to great lengths to inform their research nurse that most of their symptoms and concerns were not cancer related even though particular symptoms such as fatigue are commonly experienced by breast cancer survivors. In fact, a number of the women were concerned that they were not helping in the research study because they believed their symptoms and problems were not cancer related. Women seemed very reluctant to attribute current or continuing symptoms to breast cancer and its treatment that had been completed several months before entry onto the study.
Examples of compartmentalization include a woman who had a difficult boarder living in her home. This woman complained of "physical and mental fatigue," but she did not think her fatigue was cancer related as much as related to the stress of having the boarder. Another woman who was caring for an ill spouse and later grieving his death felt similarly. She also had multiple health problems (ie, pain from arthritis and limited mobility from a knee replacement) as well as a home in need of repairs she was unable to complete. She did not believe that the physical and emotional problems she had could be attributed to her breast cancer or its treatment. She repeatedly expressed concern about her problems not being from breast cancer but from other situations in her life. Although this may be true, she continually failed to recognize the impact breast cancer and subsequent treatment-related adverse effects may have had on her current health issues.
Although there were a few exceptions, one area related to breast cancer that was usually not taken in stride was the fear of recurrence. Routine mammograms, newly discovered lumps, and additional biopsies after diagnosis and treatment of initial breast cancer were common worries for most women. For example, one woman who required a biopsy when a shadow was detected on a follow-up mammogram described a week of "emotional ups and downs" that only abated once she learned that the results were negative. Yet another woman described the fear she felt as she waited for the results of her first follow-up mammogram. She was extremely concerned about possibly going through treatment again if the mammogram was positive for recurrence. The woman "thinks about it [recurrence] all the time."
Another woman, however, reported no concern when her oncologist discovered a new breast lump during a follow-up visit and recommended surgery to remove the lump. Similar to acceptance described above, this woman believed that "snags along the way" were "expected." This woman stated she had "a very positive attitude, dealing with life as it comes." It is unknown if this woman's acceptance and positive attitude would have persisted if the lump was cancerous (her surgery occurred after the interview).
Older women also discussed issues that seemed to be more pressing for them now that treatment was completed. These issues included other health problems in addition to cancer, caring for seriously ill family members, and ongoing "everyday" stressors. Interestingly, some women discussed these topics more than cancer-related topics.
Older women discussed having acute, transient illnesses (eg, common colds, bronchitis, urinary tract infections, and headaches) as well as a report of ongoing chest pain. Consistent with the age group selected for this study, women also discussed numerous chronic illnesses that are more prevalent in older people,26,27 including diabetes mellitus, irritable bowel syndrome, diabetic neuropathy, and osteoporosis. Pain and physical limitations were often accompaniments to these chronic conditions. The women more often attributed pain to their acute or chronic illness experiences even when asked about cancer symptoms and adverse effects. For these women, chronic conditions and their associated pain and/or physical limitations worsened or, at best, remained constant over time.
Women were typically able to cope well with chronic health conditions and maintain their daily activities despite apparent major health-related obstacles. Even if a woman was temporarily overwhelmed by an exacerbation of an existing chronic health problem and the chronic health problem coexisted with a cancer-related symptom, she would describe herself as actively coping. For example, a woman with multiple chronic illnesses and a sick husband in addition to lymphedema from cancer described herself as "plugging away with life's problems." This woman continued to work part-time and take care of her ill husband. Even though the woman reportedly admitted to fluctuating between "feeling down and feeling positive," she also felt that her "quality of life is excellent." She elaborated, "Nothing stops her."
Several of the women were caring for an ill family member during all or a significant portion of their diagnosis, treatment, or posttreatment phases. In one instance, a woman described caring for her gravely ill spouse when she was diagnosed and treated for her breast cancer. He died subsequently while she was undergoing treatment. Another woman was currently caring for a critically ill daughter. This influenced how she took care of herself. She discussed having chest pain for over a month and ignored it because she was so focused on her daughter that she "has not been centered" on herself. Like other, albeit less extreme examples, several women who were caring for ill family members ignored their own health and minimized their health problems.
Older women also discussed everyday stressors or daily hassles. For many women, these everyday stressors were multiple and long-standing. They experienced family issues (eg, "disagreements with adult children"), housing problems, financial concerns, stressful living conditions, change in primary physician, car and transportation issues, motor vehicle accidents, holidays, and weather events (eg, hurricanes).
In one instance, a woman was living in central Florida with 2 grandchildren and 4 great-grandchildren in a small house without air conditioning. Her husband was in a nursing home. She stated that her relatives were "bothersome and irritated her" and that she felt "hopeless" over her multiple family problems. She appeared "worn down and overwhelmed by life." Another woman had a boarder with "behavior problems" living in her home. She had "tried to kick him out several times." Despite continual problems with her boarder, she has done nothing to change the situation. This woman also had multiple health issues (ie, diabetic neuropathy, foot ulcers, limited mobility, and pain).
This research provides information about the posttreatment concerns and coping mechanisms of older breast cancer survivors. Study findings suggest that older, early-stage breast cancer survivors adopted an attitude of "business as usual" and focused on everyday concerns even though they continued to experience symptoms that were likely adverse effects from cancer treatment. They attributed many typical cancer-related adverse effects to aging instead of cancer. This finding about symptom attribution is consistent with the literature. Heidrich et al18 demonstrated that older breast cancer survivors attribute the causes of their symptoms after treatment to chronic illness, aging, or unknown causes instead of breast cancer.
In addition, older women in this study were accepting of adverse effects as part of aging and part of life. Few women were bothered by the adverse effects, and few seemed to seek treatment. The only cancer-related concern that did seem to affect older women was fear of recurrence. However, some women in this study were able to accept the possibility of recurrence and take it in stride. Fear of recurrence in women with breast cancer is well documented in the literature,28-30 although no studies could be located that discussed variation in or predictors of fear of recurrence.
After treatment, non-cancer-related concerns overshadowed concerns from having had breast cancer, and cancer seemingly had very little impact on their lives. They compartmentalized their experience with cancer and were eager to move on. These older women felt their non-cancer-related concerns were more a source of current problems. For example, they attributed fatigue and anxiety to current everyday problems rather than to the cancer or treatment itself. Although there is no way of determining the origin of the women's symptom, it is noteworthy that many of the symptoms the women distinguished as non-cancer related, namely, fatigue, anxiety, and insomnia, are commonly reported symptoms in breast cancer survivors.31-33
The phenomenon of compartmentalization was an interesting finding in this study. Although the interviews provided ample examples of compartmentalization, they lack sufficient detail to explain why older women compartmentalize cancer from their everyday lives. They do, however, contain information for speculating. Older women reported a number of chronic illnesses. They were familiar with daily symptoms such as pain, limited mobility, sleep disturbance, and fatigue from their chronic illnesses. Some of these symptoms also resulted from ongoing, everyday stressors and caring for or worrying about seriously ill family members. Clearly, these older women had years of experience with accepting symptoms as a part of everyday life. It is therefore not surprising that the older women in this study transferred this management style to their experience with cancer. In fact, it could be argued that a developmental consequence of aging is learning to cope with life's hardships, including symptoms, through acceptance and taking things in stride.17,34 Once cancer was accepted as "part of everyday life," it would have been antithetical for the women to continue to focus on lingering problems from cancer as separate from other aspects of their lives. In addition, it is not unreasonable for anxiety over seriously ill family members to overshadow most anxiety-provoking aspects of the cancer experience, particularly when one's diagnosis is early-stage breast cancer, and active cancer treatment has ended.
Because of the sample characteristics, generalization of these results cannot be assumed. Women in the study were mostly white, English speaking, and unemployed/retired. Half of the women in this study had a household income of less than $30 000. The majority were diagnosed with stage I disease and received lumpectomy, radiation therapy, and hormonal therapy. Older women diagnosed with advanced breast cancer may have a different experience based on the inclusion of chemotherapy in their treatment plan. Younger women still in the workforce and those treated more aggressively may also have a different experience likely due to more intense treatment-related adverse effects.
These findings provide new information about how older women view and cope with their breast cancer in survivorship that can be used to inform future studies. In addition, this study provides a more comprehensive view of the phenomenon of older women surviving with breast cancer as it shows how cancer fades into the background as everyday concerns take over.
New findings from this study include depicting older women as viewing cancer as a way of life and compartmentalizing the experience of breast cancer. This tendency to minimize lingering symptoms and accept them as part of life may lead to decline in physical health and functioning and increase the risk of disability and frailty.35,36 Nurses and other healthcare professionals should consider that older women may not be able to readily determine which lingering adverse effects from treatment are worthy of reporting to their oncology team. Nursing assessment of posttreatment adverse effects should include asking direct questions about common treatment-related adverse effects and determining how older women differentiate symptoms that are similar to symptoms they experience from other comorbid or chronic illnesses. Older women who expect adverse effects as part of aging may need help in recognizing the impact of treatment-related adverse effects on their daily functioning. Additional patient education is also needed about the manageability of certain adverse effects and the health benefits that occur from managing rather than accepting symptoms.
Information from this study is useful for addressing the recommendations that interventions be modified or tailored to the specific needs and concerns of older breast cancer survivors.10 Tailoring interventions for older women must address how older women minimize symptoms and adverse effects related to their cancer and cancer treatments and address their concerns about everyday stressors and symptoms from other health conditions.
Future directions for research with older breast cancer survivors include more direct examination of older women's symptom attributions about cause and manageability and investigation on how these attributions are related to engaging in interventions to improve QOL. In addition, further research is needed to examine how older women use compartmentalization to cope with their breast cancer diagnosis. It is unknown if coping by compartmentalization is specific to breast cancer or if it is used to cope with other illnesses. Finally, studies that examine posttreatment concerns of younger women and women with advanced stages of breast cancer would provide useful information for comparison and generate more certainty about concerns that are unique to age or stage of disease.
This study describes posttreatment concerns of older women recently treated for early-stage breast cancer. Breast cancer is not an isolated event for older women. Older women seem to do well after treatment and focus on everyday-type problems and concerns instead of lingering on the fact that they were diagnosed with and treated for breast cancer. They also often accept adverse effects as part of life, which can be problematic if it interferes with managing cancer-related adverse effects. This study can guide education related to posttreatment symptoms and their manageability for older breast cancer survivors and assist nurses in helping older women identify and manage cancer-related concerns after treatment.
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