**1. Introduction**

26 Topics in Cancer Survivorship

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Worldwide, breast cancer is the predominant form of malignancy in women (Hortobagyi *et al.*, 2005). However, when diagnosed in an early stage, women have a good chance to survive for a longer period of time. Therefore, it is important to focus on the impact of breast cancer and its treatment on long-term psychosocial outcomes. In recent years, quality of life (QOL) has become a primary endpoint in oncology (Movsas, 2003, Sprangers, 2002). Body image is an important aspect of QOL, especially in breast cancer patients (Avis *et al.*, 2005), because of the mutilating effect surgical treatment may have. Body image is a component of the self-concept of a woman, which includes feeling attractive and feminine (Fobair *et al.*, 2006). Body image is defined in different ways, but typically conceived as a multidimensional construct, consisting of perceptual, attitudinal, and behavioral aspects.(Jolly *et al.*, , Sarwer and Cash, 2008) Body image evaluation (e.g., satisfaction or dissatisfaction) and body image investment (i.e., the psychological importance of one's appearance to his or her sense of self or self-worth) are the most central body image dimensions.(Sarwer and Cash, 2008) Patients experience a body image problem when a marked discrepancy exists between the actual or perceived appearance or function of a discrete bodily attribute(s) and an individual's expressed ideal regarding this bodily attribute(s).(White, 2000) A positive body image is related to patients' ability to cope with cancer (Pikler and Winterowd, 2003). In this study, the focus will be on the dimension of body image evaluation.

Women with breast cancer often experience a decrease in satisfaction with body image after surgery, irrespective of type of surgical treatment (Brandberg *et al.*, 2008, Ganz *et al.*, 1992, Kraus, 1999, Lindop and Cannon, 2001). There is no consensus whether the type of surgery received is related to dissatisfaction with body image after surgery. Some studies found that women receiving MTC report lower scores on body image compared with women receiving BCT (Anagnostopoulos and Myrgianni, 2009, Engel *et al.*, 2004, Ganz *et al.*, 1992, Janni *et al.*, 2001, Janz *et al.*, 2005, Kenny *et al.*, 2000, Schou *et al.*, 2005). However, a number of studies did not find type of surgery to be a relevant factor in satisfaction with body image (Fobair *et al.*, 2006, Goldberg *et al.*, 1992, Schover *et al.*, 1995, Wolberg *et al.*, 1989). Furthermore, previous research was also inconsistent regarding adjuvant therapy. Although most studies

Changes in Body Image in Women with Early Stage Breast Cancer 29

Women with a palpable lump in the breast or an abnormality on a screening mammography were referred by their general practitioner to the outpatient clinic of the St. Elisabeth Hospital (Tilburg), the Maasland Hospital (Sittard; since August 2004), or the Jeroen Bosch Hospital (Den Bosch; since January 2006) in the Netherlands between September 2002 and September 2007. Women were included if they had an abnormality in the breast, were able to read, speak and write Dutch, and were 18 years or older. Women who had a history of abnormalities in the breast, benign or malignant, or had a breast tumor that was too large (>5 centimeter) for BCT, were excluded from the study. After written informed consent and before the first appointment with the surgeon, the participating women completed a set of questionnaires. Thus, women completed the first set of questionnaires when the diagnosis was still unknown. After this baseline measurement (Time-1), a set of questionnaires was also completed one (Time-2), three (Time-3), six (Time-4), and 12 months (Time-5) after diagnosis (BBP) and/or surgical treatment (BC). The breast cancer group consisted of 219 patients; the women with benign breast problems (BBP group) consisted of 381 patients (See Figure 1). Non-participants (57.8 ± 10.1 yrs) were older than participants (55.0 ± 10.4 yrs; p=.001) in the study. They did not differ on other sociodemographic (i.e., living with a partner, having children, educational level) or clinical characteristics (i.e., disease stage, type of surgery, adjuvant therapy). The length of the questionnaires and the amount of stress the women experienced during the diagnostic period were the reasons for not participating in

All women completed questionnaires on personality factors (only at baseline) and the WHOQOL-100 Body Image and Appearance facet (all time points). The BC group also completed the EORTC-QLQ-BR23 Body image subscale from Time-2 onwards. Both instruments were chosen since both subscales complement each other, i.e., the Body and Appearance facet covers more general concerns (satisfaction with they way the body looks, acceptance of bodily appearance, and inhibition by own looks), while the Body image subscale

The Neuroticism-Extraversion-Openness Five Factor Inventory (NEO-FFI) (Costa and McCrae, 1992, Hoekstra *et al.*, 1996) was developed to study an individual's personality by testing the five domains of the Five Factor or Big Five Model: neuroticism (i.e., the tendency to experience distressing emotions, such as fear, guilt, and frustration), extraversion (i.e., the disposition towards cheerfulness, sociability, and high activity), openness (i.e., the tendency to have a receptive orientation towards varied experiences and ideas), agreeableness (i.e., the inclination towards interpersonal trust and consideration of others) and conscientiousness (i.e., the tendency towards persistence, sense of duty, organizing, planning, and self-discipline). This self-report questionnaire consists of 60 statements. Each statement is rated on a 5-point scale ranging from 1 (*strongly disagree*) to 5 (*strongly agree*), resulting in dimension scores ranging from 12 to 60. The psychometric properties are

The World Health Organization Quality of Life assessment instrument-100 (WHOQOL-100) (De Vries and Van Heck, 1997, WHOQOL Group, 1998) is a cross-culturally developed generic multi-dimensional quality of life measure. This questionnaire consists of 100 items

covers feelings of low attractiveness and femininity as a result of cancer or treatment.

the study. This study was approved by the local ethics committee.

acceptable to good.(Costa and McCrae, 1992)

**2. Methods 2.1 Participants** 

**2.2 Questionnaires** 

showed that chemotherapy (Fehlauer *et al.*, 2005, Joly *et al.*, 2000), hormone therapy (Ganz *et al.*, 1998), and radiotherapy (Fehlauer *et al.*, 2005, Hopwood *et al.*) did not negatively affect body image, Schover et al. (Schover *et al.*, 1995) concluded that chemotherapy did have a negative impact on body image, while hormonal and radiation therapy did not.

Women's perception about their bodies may be influenced by the length of time since treatment. In general, most studies found that body image improved over time (Hopwood *et al.*), for MTC and BCT (Ganz *et al.*, 1992, King *et al.*, 2000).However, in a more recent study, it was found that most body image scores were quite stable, especially for MTC patients. Only BCT patients felt more attractive and feminine after two years (Engel *et al.*, 2004). Information about the effect of surgery across time is lacking and few studies measured body image before diagnosis making it impossible to know the effect of treatment on patients' body image. Therefore, the first aim of this prospective follow-up study was to examine changes in body image across one year, starting before diagnosis and comparing women with benign breast problems (BBP group) with women with breast cancer (MTC and BCT).

The impact of disease and treatment on general QOL seems to vary with age, marital status, and educational level, with younger women and women with lower levels of education reporting lower QOL scores when patients received chemotherapy (Janz *et al.*, 2005, King *et al.*, 2000). Two studies reported a strong relationship between age and body image (Al-Ghazal *et al.*, 1999, King *et al.*, 2000, Yeo *et al.*, 2004). The largest negative impact of MTC on body image was found amongst young, married women (King *et al.*, 2000, Yeo *et al.*, 2004). In contrast, other studies did not find differences in scores on body image between younger and older women (Engel *et al.*, 2004, Hartl *et al.*, , Kenny *et al.*, 2000, Zimmermann *et al.*, 2009).

Body image is not only influenced by life events such as having breast cancer, but also by culture, socio-economic status, and personality (Diener *et al.*, 2003). The personality traits extraversion (the disposition towards cheerfulness, sociability, and high activity) and neuroticism (the tendency to experience distressing emotions, such as fear, guilt, and frustration) may have an effect on QOL (Diener *et al.*, 2003). Only one study examined these characteristics and found that neuroticism was acting as a vulnerability factor for anxiety and/or depressive symptoms one year after breast cancer surgery (Millar *et al.*, 2005). Besides, Costa et al. (Costa *et al.*, 1992) found that neuroticism was correlated with a negative body image and extraversion was correlated with a positive body image. However, there is a lack of prospective data on possible relationships between psychological, clinical, and demographic factors and body image (Hartl *et al.*, 2003, Zimmermann *et al.*, 2009). Therefore, the second aim of this prospective study was to examine the effects of personality, sociodemographic factors, and type of surgery on body image in breast cancer patients at different time points after treatment over a one-year period. In contrast with previous studies on satisfaction with body image in breast cancer patients, this study examined which factors from a combination of factors (age, marital status, educational level, work status, disease stage, type of surgery, chemotherapy, radiotherapy, hormone therapy, neuroticism, extraversion, agreeableness, openness to experiences, conscientiousness) predicted body image. It is hypothesized that body image problems arise from surgery and are most commonly experienced following MTC. In addition, body image problems are a function of personality (i.e., neuroticism).
