The Ambiguous Transforming Body Associated With Relative Weight Changes
In study I, the 95 women included were distributed evenly in 2 groups by initial adjuvant treatment: an endocrine treatment group (EG) and a CT ± endocrine group (CG) (Table 2). From the total cohort, the relative weight of 40 women remained stable between baseline and 18 months. A total of 54 women experienced weight change of greater than 2.5%, distributed in 16 women with weight loss and 38 women with weight gain (Figure 8). Weight variations between ±2.4% (stable weight) may seem insignificant. However, integrating the variation with the women’s experiences, it appears that even these small weight changes combined with extended waist circumference may influence their perceptions of their bodies and selves extensively (Figure 3). Weight gain and extended waist size induced a negative self-perception. Perceived as an adverse effect from cancer treatment, the changes were occasionally seen as a necessary cost for being alive or interpreted as an effect of normal aging.
As stable weight with extended waist affected the women’s perception of their body and self negatively, gains greater than 2.5% similarly influenced the women’s body and self-perception (Figure 4). These changes provided an alienation from former body perception and inflicted sense of womanhood and seeing oneself as an autonomous human being. The weight gain ranged from 2.6 to 10.4 kg, and in addition to the impact on looks and possibilities for normal living, concerns regarding a healthy body occurred, although weight gain could be a necessary cost in attempts to keep up with other adverse effects as nausea (Figure 4). By contrast, it seems that weight loss greater than 2.4% strengthens one’s self-identity and induces a feeling of being able to act autonomously, which leads to increased self-confidence. Weight loss also promoted the ability to be in motion. It was perceived as a means to prevent recurrence and turned the attention away from cancer illness toward a positive body perception (Figure 5).
The Ambiguous Transforming Body in the Past, Present, and Future
The majority of stable weight is observed in the EG, and although 2.5% to 5% changes are almost evenly distributed in the groups, the serious changes of greater than 5% appear in 17 in the CG compared with 6 in the EG (Figure 8). The women belonging to the CG (n = 48) were mainly premenopausal with less comorbidity than the EG (Table 2). They displayed several changes in body composition data that fluctuated over time and were statistically significant and of concern for health in that body fat mass turned out to be increased at 18 months. Interviewing a selected sample between 12 and 18 months after breast cancer diagnosis demonstrated how they interpreted their bodily changes in the light of past, present, and future. Comparing their bodies before diagnosis and during chemotherapy with an average change of 1.6 kg increase in total body water, they described their body as extremely changed and uncomfortable and seem to be prevented in beings and doings (Figure 6).
At 12 months, the average changes were decreasing, but now the weight gain of 0.9 kg was associated with excess fat mass. Despite the minor changes, some women experienced an unfamiliar body, confrontation with a transformed identity, new reality, and self-perception. As the body had to be obeyed during chemotherapy, some women now felt responsible for taking care of the bodily changes. Although the changes still prevented their normal beings and doings, some women felt the body was on its way to return to former weight and shape. At this distance from chemotherapy, the women articulated how they wished to perceive and control their bodies in the future to return to their normal weight and shape. In their attempts to regain a friendly and effortless body, they strived to find a new balance between demands, desire, and energy and thus be able to perform activities related to everyday beings and doings. However, at 18 months, the average weight showed an increasing tendency with 1.4-kg fat mass compared with baseline measurement.
The physical changes related to women in the EG (n = 47) was minor, but statistically significant regarding changes in waist circumference (Figure 7). The body changes in these women did not fluctuate as in the CG. Still the changes were perceived as uncontrollable adverse effects that reminded them of their cancer illness and the request for medication to avoid recurrence. In this group, 5 women were exposed for weight changes greater than 5%. However, in line with the quantitative results, it was not the weight changes that were of concern for the women interviewed (n = 5), but the extended waist circumference. The enlarged waist circumference was associated with developing an unhealthy body figure with increased abdominal fat. The total body fat increased with 0.2 kg during 18 months, which do not seem to be in accordance with the women’s experiences of their changed body.
Mean age in the EG was higher (66 years; range, 47–82 years) compared with the CG (50 years; range, 28–68 years) (Table 2), and the women interpreted the changes as a consequence of medication and also a sign of aging. Collaborating with the changed body by keeping an eye on nutrition, being physically active, or hiding the body changes with altered clothing style, the women tried to come to terms with what they perceived as unpreventable changes. This seems to prevent a strong division of the unified body subject as the body subject changed from “I was my body” to “I and my body” while hoping for regaining the former unified body subject.
The changed body reminded women of their illness, affected their sense of womanhood and self-respect, and questioned their ability to maintain or lose control. As such, these changes signaled an unhealthy body in discomfort, whereas regaining their former figure reminded them of being cured. To move to a higher level of comfort when the women perceived the body as diseased and disobedient,41 they endured and found meaning in their condition by interpreting the discomfort as adverse effects of medication or normal aging. Other studies confirm that weight gain influences identity and imposes negative attitudes toward oneself23–25,42 contrasted by weight loss that may strengthen self-identity and sense of being able to act autonomously and thus increased self-confidence.42
In the case of women who were overweight before breast cancer diagnosis, Halbert et al23 found a positive reaction on weight loss. Weight loss in overweight women may be voluntary,43 incentivized by a wish to obtain a healthier lifestyle.17 In the present study, weight loss turned the attention away from illness in the 2 women who lost weight. Furthermore, when attention was focused on the risk of recurrence, the meaning of weight loss was associated with being able to take care of one’s body and self as an autonomous responsible agent. In this context, the changed bodies made the women feel attractive; their body movements were eased, and their relationship with the world was positively affected. Given that modern society prefers the female body to be slim and toned and sees the body as an expression of one’s identity,44 the reaction to the changes may thus be a sign of a changed relationship with the world but is also connected to self-perception and identity. Furthermore, regardless of stable weight, weight gain, or weight loss, the changes seemed to be continuously related to fearing recurrence and death because of awareness of the possible association with fat tissue exposure to estrogen.6 Weight gain intertwined with fear of recurrence and health was also observed in the study of Maley et al.24 Unexpected weight gains inflicted self-blame related to the possible role of excess weight in recurrence, which also played a significant role in the present study.
In illness, the habitual body acts as a reference point for the present body and highlights how the actual body may be mutilated and obstructed in beings and doings.38 The largest change in measured weight and body composition except for the waist was observed at 6 months among women receiving chemotherapy (Figure 7). This is in accordance with other studies that report increasing weight after completion of chemotherapy.14–16 During and immediately after chemotherapy, the women perceived a body with comprehensive changes, out of control, and an object apart from initial self-perception. Perceived as heavy, hurting, big, and fat, the body was an entity that had to be obeyed. Compared with the habitual body, which used to be strong, enduring, and active, the body during chemotherapy turned into a sick and unknown body. The body subject turned into “I” and “it.”
The changes evened out at 12 months as shown,14 but while some women experienced a body on its way to becoming normal, other experienced a body with remaining and increasing changes. The body was perceived as unfriendly, fragile, and sensitive. The challenge of reconciling to this transformed identity is that the new reality and self-perception could be experienced as transitionally staying in the present body while longing for the habitual body. A healthy transition is perceived as well-being and involves development and movement from one state to another.45 However, staying in between 2 states, one can feel homeless and lost.46 Statements such as “it was not my body” indicate separation and could be a sign of feeling homeless, whereas the metaphor “being the master of one’s own life” points at an attempt to not go into a homeless existence. Struggling to feel at home in one’s body may thus be associated with an unfinished transition and discomfort.
Independently of belonging to the EG or the CG, when talking about the future, the women longed to return to their precancer weight and body, which usually remained unnoticed and required no effort. Some wanted to regain former waist circumference or lose weight, others to keep their weight loss, but all were increasingly focused on doing well for their bodies by being active and eating healthily. Long-term survival served as an internal motivational factor,47 but returning to a precancer body also provided distance from cancer illness and a feeling of being cured.
At 18 months, waist circumference was statistically significantly increased in both women receiving chemotherapy and women receiving endocrine treatment alone. However, the results at 18 months showed almost stable weight, body fat, and total body water among women in EG, whereas increased mean weight now consisted of increased fat mass in women from the CG. In general, the struggle to avoid the exposure to estrogen from fat tissue6 was not successfully accomplished. Body composition changed over time, although the women aimed to find a new balance between demands, desires, and energy and to regain a friendly body able to support everyday beings and doings.
The women struggled against capitulation to unpredictability and disorder by disciplining the body to maintain control.48 To be master of one’s own life, keeping autonomy, personal agency, and capability to carry out certain actions may be a way of seeking predictability. However, in the effort to remove the traces of illness and return to the same body and self as before breast cancer treatment, a disciplinary course of action might encompass fragmentation and dissociate the body as it. Although survival was the major goal, interpreting the changes as vanity and downplaying them as normal aging may be a sign of resignation or acceptance. Resignation and acceptance contribute to reintegration with the world and life with new limits.41 However, the association between fat tissue and breast cancer risk6 implies that some women apparently need special attention and help to maintain or regain a healthy body composition.
Studies I and II have briefly been presented to provide the ability to follow the entire research process through the integration. In a mixed-methods study, the strategies used to enhance validity should address design, data collection, data analysis, interpretation, and conclusion, and the study must satisfy the conditions for a mixed-methods study regarding integration.5,28 At the data collection level, lack of using participants from the same sample is a threat against validity.5,40 Consecutive inclusion that provided a representative sample, few dropouts, and missing data provided robust data from the cohort.49 Subsequently, 12 women from this cohort were interviewed to accommodate integration on sample level. It may be questioned whether repeated interviews could have contributed with a clearer description of changes in the body—and self-perception over time. However, including and interviewing participants for the qualitative component at study initiation could have prevented purposeful sampling and the ability to gain rich data about changes in weight and body shape.
As data have to be analyzed and assessed in their frame of logic,5 the analysis of qualitative data used intercoder agreement and bridling in joint discussions among the researchers to strengthen the internal validity.32,50 By means of statistical tools, the cohort of 95 women was divided into subgroups. Although some results showed a statistically significant difference, they have to be interpreted with caution. The generalizability of the findings from sample to the population of women in adjuvant treatment for breast cancer is thus delimited. However, at the same time, subgroup analysis revealed that a pooled sample can obscure findings at the group and individual levels, and given the adverse effect of increased fat mass, this enables an attention to the risk of these changes among women given chemotherapy.
The validity of integration of findings illustrated in joint displays builds on the validity of the 2 studies. In addition, the meta-inferences drawn and the validity of the mixed-methods study are enhanced when knowledge is found valuable and transferred to other contexts.32 This assessment will take place in the audience of health professionals. On behalf of the insight from this study, we argue that the influence of changes in weight and body composition on body and self-perception do not follow a linear relationship. Instead, the perception and meaning of the changes are filled with multiple meanings that change over time.
Conclusion, Implications for Practice and Future Research
The overarching meta-inferences from integrating quantitative and qualitative data showed that weight changes analyzed by statistical tools in a pooled sample do not account for or correspond with the perceived changes. Lack of understanding the women’s experiences may push to bodily alienation and social changes and challenge self-identity and integrity as even small changes in weight combined with extended waist circumference affected the women’s perception of body and self extensively and triggered fear of recurrence, shame, and self-blame. To cope with the unmanageable changes, the unified body-subject risk to become and remain dissociated keeps the women in an illness condition. Thus, quantitative findings suggesting that weight changes in general are overestimated must be challenged in a healthcare context that aims to provide holistic care.
Women in adjuvant antineoplastic treatment for breast cancer are at risk of changes in weight and body composition with serious implications. In addition to this health threat, the overall influence of the changes on the women’s perception of their body and self calls for ongoing attention from health professionals in their effort to provide a distance from the cancer illness and induce feelings of being cured. Staying in a transitional state between their habitual and present body, they need help to deal with bodily changes, as well as their influence on perception on body and self. The goal for the health professionals may thus be to support women in reintegrating their bodily changes into a new habitual body in accordance with the individual woman’s body and self-image.
Implementation of individual interventions regarding physical, psychological, and social concerns in the transition period from patient to survivor has demonstrated to reduce cancer-specific distress.51 Concrete suggestions for women in this transition period could address how to minimize weight-related adverse effects by educating the women in doing well for their body by being physically active, healthy eating, and controlling hunger. For example, attention has been on the effect of physical activity on quality of life among breast cancer survivors and clinic-based weight management programs.52 However, the question is whether “fixing or normalization” of the changed body contributes to a feeling of wholeness, a unified body subject, as no direct correlation is found between the degree of changes and the women’s experiences.
In addition to concrete recommendations and assessments by means of breast cancer–related quality-of-life questionnaires, Slatman,53 from a phenomenological and hermeneutical point of view, suggests that body evaluation in oncology after-care involves a narrative approach. Before deciding any interventions, the health practitioners must enter a joint narrative work with the women. During a quest narrative, the narrator may, in collaboration with the professional, tell, build, and interpret her story aiming to deal with the present situation with a special focus on how she values her physical appearance and sense of wholeness.53 From this stance, it may be possible to support the woman in the transition from one habitual body to a new one, while taking her body perception seriously independent of how the changes are displayed quantitatively. Furthermore, it may provide health professionals with directions for interventions that may influence the women’s perception of body and self in a positive way and thus provide comprehensive care for these vulnerable women.
Implementation of this joint orientation in a busy outpatient clinic may be a challenge. In line with a mixed-methods approach, long-term follow-up regarding body composition may be manageable as data collection on a bioelectrical impedance analysis is a cheap, easy, and noninvasive procedure. This will provide data on factual changes and knowledge of long-term changes. However, combining these measurements with breast cancer quality-of-life questionnaires is not sufficient to develop sensitivity to individual body experiences as they do not contain adequate vocabulary for the experiences.53 Developing a vocabulary from the women’s expressions of body changes and organizing it in a theme guide may provide the professionals with a tool to be used in clinical settings. This may be an assignment for future research.
The authors thank the women for their valuable contribution in providing knowledge of weight changes during and after antineoplastic treatment for breast cancer.
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Keywords:Copyright © 2017 Wolters Kluwer Health, Inc. All rights reserved
Body composition; Body perception; Body weight changes; Breast neoplasm; Descriptive analysis; Mixed methods; Phenomenology; Self-perception; Weight changes