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Journal of Clinical Oncology, Vol 26, No 24 (August 20), 2008: pp. 3943-3949 © 2008 American Society of Clinical Oncology. DOI: 10.1200/JCO.2007.13.9568 Psychological Reactions, Quality of Life, and Body Image After Bilateral Prophylactic Mastectomy in Women At High Risk for Breast Cancer: A Prospective 1-Year Follow-Up Study
From the Departments of Oncology-Pathology, Surgery, Reconstructive Plastic Surgery, and Molecular Medicine, Karolinska Institutet, Stockholm; and the Department of Surgery, Central Hospital, Västerås, Sweden Corresponding author: Yvonne Brandberg, PhD, Department of Oncology-Pathology, Karolinska Institutet, Radiumhemmet, Karolinska University Hospital, S 171 76, Stockholm, Sweden; e-mail: yvonne.brandberg{at}onkpat.ki.se
Purpose To prospectively evaluate body image, sexuality, emotional reactions (anxiety, depression), and quality of life in a sample of women having increased risk for breast cancer before and 6 months and 1 year after bilateral prophylactic mastectomy (BPM), and to compare preoperative expectations of the operation with postoperative reactions concerning the impact on six areas of the women's lives. Patients and Methods A total of 90 of 98 consecutive women who underwent BPM during October 1997 to December 2005 were included. Data were collected by self-administered questionnaires (eg, Hospital Anxiety and Depression scale, Swedish Short Term-36 Health Survey, Body Image Scale, Sexual Activity Questionnaire) before the operation (n = 81), and 6 (n = 71) and 12 months (n = 65) after BPM. Results Anxiety decreased over time (P = .0004). No corresponding difference was found for depression. No differences in health-related quality of life over time were found, with one exception. A substantial proportion of the women reported problems with body image 1 year after BPM (eg, self consciousness, 48%; feeling less sexually attractive, 48%; and dissatisfaction with the scars, 44%). Sexual pleasure was rated lower 1-year post-BPM as compared with before operation (P = .005), but no differences over time in habit, discomfort, or activity were found. Conclusion No negative effects on anxiety, depression, and quality of life were found. Anxiety and social activities improved. Negative impact on sexuality and body image was reported.
Women in Sweden with hereditary increased risk of breast cancer are offered regular follow-ups and are informed of the possibility to undergo bilateral prophylactic mastectomy (BPM) including immediate breast reconstruction. Prophylactic oophorectomy is also addressed. BPM has been shown to reduce incidence and mortality in breast cancer in women of families with a well-defined history of breast cancer1 and in women with BRCA1 or BRCA2 mutations.2-4 Few prospective studies of the effects of BPM on psychological variables, body image, and sexuality have been reported.5 The majority of the published studies conclude that BPM reduces psychological morbidity but may have negative impact on sexuality and body image.6-12 The aim of this study was to prospectively evaluate body image, sexuality, emotional reactions (anxiety, depression), and quality of life in a sample of women having increased risk for breast cancer before BPM, and 6 months and 1 year after. Another aim was to compare preoperative expectations on the operation with postoperative reactions in six areas of the women's lives. Approval of the study was received from the local ethics committee at the Karolinska University Hospital (May 1997; No: 97:137).
A collaborative group at the Karolinska University Hospital, consisting of geneticists, breast surgeons, plastic surgeons, oncologists, a psychologist, and nurses conducts a routine program for women at high risk for breast cancer considering BPM, described in detail previously.13 Women with small cup sizes and no wish to increase breast size receive permanent implants placed submuscularly using a skin sparing incision. For women with larger breasts and a higher body mass index, alternative skin incisions and expander implants were used.14 The total reconstruction times varies from 3 to longer than 12 months depending on the number of additional operations needed, (usually 2 to 3) including tattooing of the areolae.
Patients and Procedure
Questionnaires The Sexuality Activity Questionnaire (SAQ) consists of 10 items constituting three subscales (pleasure, discomfort, and habit), scored according to the original article.17 Items about sexual activity are included. Five professionals (three nurses, one sociologist, one psychologist) at the Karolinska Hospital translated the questionnaire into Swedish in 1997. No formal validation or reliability testing were performed on the Swedish translation. The English version has been shown to be a valid, reliable, and acceptable measure of sexual functioning.17
The Body Image Scale (BIS), designed for the assessment of body image in cancer patients to be completed after surgery,9,18 consists of 10 items scored from 0 (not at all) to 3 (very much), concerning impact of surgery on self-consciousness, physical and sexual attractiveness, femininity, satisfaction with body and scars, body integrity, and avoidance behavior. The BIS version 1 was used,9 translated to Swedish by the same group as described earlier. No formal validation or reliability testing were performed for the Swedish translation. The Cronbach
The Hospital Anxiety and Depression (HAD) scale consists of 14 items, 7 assessing anxiety and 7 assessing depression,19 scored 0 to 3, giving summated scores on each of the two scales between 0 and 21. Cutoff points were lower than 8 (within normal range), 8 to 10 (possible clinical cases), and The Swedish Short Term-36 Health Survey (SF-36) consists of 36 items constituting eight domains of health-related quality of life: physical functioning, role limitations associated with physical problems, role limitations associated with emotional problems, pain, general health, social functioning, vitality, and emotional well being. The mean scores on each of the domains are transformed to a 0- to 100-digit scale, high figures represent high functioning. The Swedish version has shown good psychometric properties21 and normative data for Swedish women are available.22
Statistical Methods The sum of the ten items in the BIS gives an overall score. Paired t-test was used to test difference in summated BIS scores between the 6-month and the 12-month assessment. Wilcoxon signed rank sum test was used to test differences between assessment points on the items in impact on six areas and body image. In the SAQ questionnaire, the sums of six items and two items give overall scores concerning sexual pleasure and discomfort, respectively. The HAD subscales were analyzed as suggested by the original authors19 and SF-36 subscales according to the scoring manual.22 Analysis of variance repeated measurement, including those who responded at all points of assessment, was used to evaluate differences between the assessments before BPM, 6-month and the 1-year follow-up on the HAD, the SAQ, and the SF-36 subscales. Unpaired t-tests were used for differences between those who responded at all points of assessment and those who did not. The P level of statistical significance was set to .01 due to multiple comparisons.
During the study period, a total of 98 consecutive women underwent BPM at the Karolinska University Hospital. Eight women were not included in the questionnaire study (not referred for consultation, n = 4; psychologist herself, n = 1; family reasons, n = 1; psychiatric diagnosis, n = 1; ovarian cancer, n = 1). Ninety women were thus included. Eighty-one women (90%) responded to the questionnaire before BPM, 71 (79%) at 6 months, and 65 (72%) at 1 year after BPM. Data for all eligible women on age at operation and BRCA1 or BRCA2 carrier status or estimated life time risk are presented in Table 1. Women registered as having prophylactic oophorectomy (n = 24; mean age, 46 years; range, 34 to 65) before BPM were statistically significantly older (t = 2.833; P = .006) than those who were not (n = 53; mean age, 40 years; range, 27 to 62). Data on prophylactic oophorectomy were missing for 13 participants.
Impact on Areas of Life Table 2 shows the number and proportion of women reporting negative or positive expectations preoperatively and negative or positive reactions after BPM. No statistically significant differences were found on any of the items between the assessment before BPM and the 6-month assessment or between the 6-month and the 1-year assessments (Wilcoxon signed rank sum test; data not shown).
Body Image Table 3 shows the proportions of women reporting in each response category at the two points of assessment after BPM. There was no statistical significant difference in summated BIS mean scores between the 6-month (mean, 4.57; SE, 0.56) and the 1-year assessments (mean, 3.71; SE, 0.45). Wilcoxon signed rank sum test for each of the BIS items revealed no statistical differences over time. No differences were found in summated BIS at any of the assessment points between women who had prophylactic oophorectomy before BPM and those who had not (data not shown).
Sexuality More than 80% reported having an intimate relationship at all three points of assessment. At the first assessment, 62% (n = 49) reported being sexually active. Corresponding figures 6 months and 1 year after BPM were 77% (n = 55) and 79% (n = 48), respectively. Women who responded "no" to the item asking about sexual activity were not asked to respond to the items on pleasure, discomfort, habit, or frequency of sexual activity. Frequencies of sexual activity during the last month for the three assessment points revealed no statistically significant differences over time (data not shown). Table 4 presents mean scores and SE for the three subscales at three assessment points. Pleasure decreased statistically significantly from the assessment before BPM to the 1-year assessment (df (2, 27); F, 5.839; P = .005). No statistically significant differences in habit or discomfort were found. There were no differences in pleasure or discomfort at any of the assessment points between women who had prophylactic oophorectomy before BPM and those who had not (data not shown).
Anxiety and Depression Table 5 shows mean scores and SE for the HAD anxiety and depression subscales at three points of assessment. Anxiety decreased over time (df (2, 53); F, 8.53; P, .0004). No statistical significant difference was found for depression. Before BPM 14 women (18%) scored above the cutoff point for possible clinical cases (8 to 10) on the HAD anxiety subscale and 14 (18%) above the cutoff for clinical cases (> 10). Corresponding figures for possible clinical cases at the 6-month and 1-year assessments were 8 (11%), 4 (6%), 9 (13%), 4 (6%), 5 (7%), and 4 (6%). Before BPM, two women (3%) scored above the cutoff point for possible clinical cases on the HAD depression subscale and four (5%) above the cutoff for clinical cases. Corresponding figures for possible clinical cases at the 6-month and 1-year assessments were 5 (7) and 4 (6), respectively. Two women (3%) scored above the cutoff for clinical cases at the 6-month assessment, but at the 1-year assessment no woman scored over this cutoff point.
Health-Related Quality of Life Mean values and SE on the SF-36 subscales at three points of assessment are presented in Table 6. No differences in quality of life between the three points of assessment were found.
Comparisons Between Those Who Did and Did Not Respond at All Points of Assessment There were no statistically significant differences found between women who responded at all points of assessment and those who did not on the SAQ subscales, the HAD subscales, and the SF-36 domains, with one exception. Those who responded to all three assessments scored higher on SF-36 general health (df (75); t, 3.22, P = .001; mean value for responders, 86.9; for nonresponders, 72.6). No differences were found at the 6-month assessment in BIS summated scores between those who responded at both assessment points and those who did not.
This study followed a consecutive sample of women with familiar risk for breast cancer who underwent BPM with the purpose to prevent breast cancer. There are several explanations for changes reported in the areas of life included in the questionnaire. The women were asked for changes related to BPM. It might seem contradictory that 61% of the respondents reported a positive change in life and that 46% reported a negative effect on intimate situations, and 25% negative effect on femininity 1 year after BPM. However, the item about change in life is unspecific in terms of what the women refer to when they respond. Some of them probably consider a negative impact in intimate situations to be a less important problem than having to live with the high risk of breast cancer. Thus, the reduction of risk by BPM and subsequently decreased worry for breast cancer might have influenced life in a positive way. The results indicate sexual and body image problems after BPM, also found in other studies.7,9,23,24 Problems in intimate situations could be related to body image which is no distinct dimension, but overlaps with sexuality and self-image.25 A substantial proportion of the women reported body image problems after BPM, although at a mild level. It should be noted, however, that those who failed to respond at the 1-year assessment tended to report higher levels of body image problems 6 months after BPM, although not statistically significant. Thus, the result at the 1-year assessment might be an underestimation of the body image problems experienced in the total sample. The impact on sexuality of BPM was also reflected by a decrease in pleasure after BPM as compared with before BPM. Some of the items in the BIS do not correlate as strongly as one would expect. Twice as many women report problems with self consciousness as with naked appearance. In addition, a larger proportion report feeling less sexually attractive as compared with less feminine. One explanation is that these items reflect various aspects. Self consciousness might be related to the woman's identity and naked appearance more to perception of the body. Similarly, femininity is a broader concept than sexual attractiveness. The number of women responding to the items on the SAQ subscales is lower than the total sample due to the fact that the questionnaire asks only sexually active women to respond to these items. Thus, if a woman was not sexually active at any of the assessment points, she could not be included in the analysis over time. This limits the sample size in that analysis. In conclusion, some women reported negative changes in intimate situations and body image problems that might have affected sexuality. It should be taken in consideration, that more than 25% of the included women had prophylactic oophorectomy before BPM, also known to affect sexuality. However, all premenopausal women are offered hormone replacement therapy after prophylactic oophorectomy and the mean age of those who had that procedure was higher than among those who did not. Anxiety decreased but depression did not change after BPM. Few patients reported levels above the cutoff points for possible clinical cases at the 1-year assessment. One drawback of this study is that cancer-specific worries were not measured, an important issue when assessing distress among women with hereditary cancer syndromes.12,26 Thus, the conclusions concern general anxiety and depression. The lack of negative psychological effects of BPM is supported by retrospective studies.7,11 In a prospective study, psychological problems decreased in women who underwent BPM as compared with a group who chose not to undergo the procedure.8 The means found on SF-36 domains were comparable with those in our previous study13 showing no statistical significant differences between women considering BPM and women of the same age in the general population. This study has a number of limitations. There are missing questionnaires at each of the assessment points, making the group that could be analyzed over time small and provides limited power to determine statistically significant differences. Thus, the descriptive data should also be considered when interpreting the results. It should be taken in consideration that the study is based on a clinical sample consisting of women who underwent BPM. Participation in our study was secondary to going through BPM. Thus, their willingness to respond to questionnaires varied and we considered it unethical to send more than one reminder. No statistically significant differences over time were found for the individual items in the impact on areas of life questionnaire or in the BIS. The interpretation of this result can be discussed. It could be that the questionnaires used were not sensitive enough to reveal differences. Another explanation is that the patients’ view did not change over time, and that perceived problems persisted. In order to evaluate the effects of missing data, comparisons were made between those who responded to all questionnaires and those who did not. Few differences were found. However, attrition might be biased with respect to general health, where responders scored better. Another possible limitation is the translations of the SAQ and the BIS. Comparisons with studies in other languages must therefore be made with caution. Some of the participants may be related family members. Analyses were not conducted to correct for this relationship. However, as this study reports on subjective perception of BPM and quality of life and consists of a consecutive series of women, the results represents women undergoing BPM during the study period. The total procedure, including filling of the prostheses and additional surgery usually takes 6 to 12 months. For a number of the women the procedure was not finished by the time of the second assessment 6 months after surgery. However, most problems seemed to persist to the 1-year assessment and the aim of the study was to study problems perceived by women during the first year after BPM. The results of this prospective study observing a consecutive sample of women with hereditary risk for breast cancer during the first year after BPM revealed no negative effects on anxiety, depression, and quality of life. On the contrary, anxiety improved. Negative impact on sexuality and body image were found.
The author(s) indicated no potential conflicts of interest.
Conception and design: Yvonne Brandberg, Kerstin Sandelin, Göran Jurell, Annelie Liljegren, Annika Lindblom, Brita Arver Financial support: Yvonne Brandberg, Brita Arver Administrative support: Yvonne Brandberg, Ann Lindén Provision of study materials or patients: Kerstin Sandelin, Staffan Erikson, Göran Jurell, Annelie Liljegren, Annika Lindblom, Anna von Wachenfeldt, Marie Wickman, Brita Arver Collection and assembly of data: Yvonne Brandberg, Ann Lindén Data analysis and interpretation: Yvonne Brandberg, Kerstin Sandelin, Annelie Liljegren, Marie Wickman, Brita Arver Manuscript writing: Yvonne Brandberg, Kerstin Sandelin, Staffan Erikson, Göran Jurell, Annelie Liljegren, Annika Lindblom, Marie Wickman, Brita Arver Final approval of manuscript: Yvonne Brandberg, Kerstin Sandelin, Staffan Erikson, Göran Jurell, Annelie Liljegren, Annika Lindblom, Ann Lindén, Anna von Wachenfeldt, Marie Wickman, Brita Arver
Supported by grants from the Swedish Cancer Society, the Swedish Association for Cancer & Traffic Victims, and the Stockholm County Council. Authors’ disclosures of potential conflicts of interest and author contributions are found at the end of this article.
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Copyright © 2008 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
coefficient for the BIS in the study sample at the 6-month assessment was 0.85. BIS was used at the two assessment points after BPM as it refers to body image after surgery. 
11 (clinical cases) for both scales, respectively.
