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© 2003 American Society for Clinical Oncology Long-Term Psychological Impact of Carrying a BRCA1/2 Mutation and Prophylactic Surgery: A 5-Year Follow-Up Study
From the Departments of Clinical Genetics, Medical Psychology and Psychotherapy, Medical Oncology, Surgical Oncology, Gynecology and Psychiatry, Erasmus MC, Rotterdam; Center of Human and Clinical Genetics, Leiden University Medical Center, Leiden, the Netherlands. Address reprint requests to Iris van Oostrom, MA, Department of Medical Psychology and Psychotherapy, Erasmus MC Rotterdam, PO Box 1738, 3000 DR Rotterdam, the Netherlands; e-mail: i.vanoostrom{at}erasmusmc.nl.
Purpose: To explore long-term psychosocial consequences of carrying a BRCA1/2 mutation and to identify possible risk factors for long-term psychological distress. Patients and Methods: Five years after genetic test disclosure, 65 female participants (23 carriers, 42 noncarriers) of our psychological follow-up study completed a questionnaire and 51 participants were interviewed. We assessed general and hereditary cancer-related distress, risk perception, openness to discuss the test result with relatives, body image and sexual functioning. Results: Carriers did not differ from noncarriers on several distress measures and both groups showed a significant increase in anxiety and depression from 1 to 5 years follow-up. Carriers having undergone prophylactic surgery (21 of 23 carriers) had a less favorable body image than noncarriers and 70% reported changes in the sexual relationship. A major psychological benefit of prophylactic surgery was a reduction in the fear of developing cancer. Predictors of long-term distress were hereditary cancer-related distress at blood sampling, having young children, and having lost a relative to breast/ovarian cancer. Long-term distress was also associated with less open communication about the test result within the family, changes in relationships with relatives, doubting about the validity of the test result, and higher risk perception. Conclusion: Our findings support the emerging consensus that genetic predisposition testing for BRCA1/2 does not pose major mental health risks, but our findings also show that the impact of prophylactic surgery on aspects such as body image and sexuality should not be underestimated, and that some women are at risk for high distress, and as a result, need more attentive care.
WOMEN IDENTIFIED with a BRCA1/2 mutation have a cumulative lifetime risk for breast cancer of 39% to 85%, and for ovarian cancer the risk is 11% to 63% at 70 years of age.1–3 The cancer incidence rates are of clinical relevance from 25 years of age onwards. Women from families with a BRCA1/2 mutation often have witnessed the disease in their close relatives. The identification as a carrier further implies that they themselves may pass or may have passed the mutation on to their own children. Several risk-reducing interventions are currently available for carriers: regular breast examinations; prophylactic bilateral mastectomy (PM) with or without reconstruction; regular gynecological examinations; prophylactic bilateral salpingo oophorectomy (BSO); and chemoprevention. In a large cohort of unaffected women undergoing genetic predisposition testing at the Rotterdam Family Cancer Clinic, about 50% of female BRCA1/2 mutation carriers opted for PM, and more than 60% opted for BSO.4 Psychological consequences of learning one’s genetic status have been studied since genetic predisposition testing for a BRCA1/2 mutation became available in the nineties, and until now no serious adverse psychological consequences have been observed.5–12 Most studies, however, followed participants only for a relatively short period of time (a maximum of 1 year after genetic test disclosure). To our knowledge, this is the first study to examine the long-term psychological implications of genetic predisposition testing for BRCA1/2 in women without a personal history of cancer. The first aim of this study was to learn more about the long-term psychosocial impact of carrying a BRCA1/2 mutation and its sequels, like PM and BSO. The second aim was to identify risk factors for psychological distress 5 years after cancer genetic predisposition testing.
Study Population and Procedure From 1995 to 1998, 118 unaffected women with a 25% or 50% risk of carrying a BRCA1/2 mutation applying for genetic predisposition testing at the Rotterdam Family Cancer Clinic were asked to participate in a psychological follow-up study. Of these 118 women, 85 consented to the study (72%). A baseline assessment that consisted of a questionnaire and interview took place shortly after blood sampling for genetic testing, but before test disclosure. Follow-up assessments were completed at 1 to 3 weeks and at 6 and 12 months after disclosure of the test result. The procedure and results of these prior studies have been described in detail elsewhere.10,11,13 In 2002, 79 participants (six of 85 women dropped out in the 1995–1998 study) were requested by letter to consent to a follow-up assessment consisting of a questionnaire and an optional semi-structured interview at home (conducted by the first author). Sixty-five women (82%; 42 noncarriers, 23 carriers) consented and filled in the questionnaire and 51 of these 65 women (31 noncarriers, 20 carriers) also agreed to be interviewed. Of the nonparticipants, nine women (seven noncarriers, two carriers) did not want to participate, four (three noncarriers, one carrier) had changed address and could not be traced, and one carrier had deceased. Of the four carriers who were lost for this assessment, one opted for PM and BSO and three for regular breast surveillance (one of which opted for BSO). The original study and the procedure of the assessment 5 years after disclosure of test results were approved by the institutional review board at the Erasmus MC (Rotterdam, the Netherlands). The range of time of follow-up was 4 to 6 years.
Measures Psychological distress and help-seeking behavior. To compare the level of general anxiety and depression to that in earlier assessments, participants completed the Hospital Anxiety and Depression Scale (HADS).14,15 This questionnaire consists of two scales assessing feelings of anxiety and depression. To assess hereditary breast/ovarian cancer-related distress, the Impact of Event Scale (IES) was used. This questionnaire measures intrusive feelings and thoughts about breast/ovarian cancer and avoidance of these feelings and thoughts.16 We did not compare the 5-year level of cancer-related distress with that measured in earlier assessments, because we used the original response categories of the IES (in contrast to earlier assessments). Breast cancer-related worries were measured with five items of the Cancer Worry Scale (CWS).17,18 Studies have demonstrated that the HADS, IES and CWS have acceptable psychometric qualities.15,19–22 Furthermore, participants indicated whether they had consulted a professional for psychological support and whether they used psychopharmacological medication since genetic test disclosure. Participants who opted for PM and/or BSO reported on a 5-point scale whether they agreed or disagreed with the following statements: "PM and/or BSO made me less anxious about developing cancer" and "PM and/or BSO was worth the adverse effects".
Body image and sexual functioning.
Body image and general sexual functioning were assessed by the Body Image/Sexuality Scale,11 which was constructed following recommendations made by Cull23 and Hopwood.24 The instrument comprises three scales: body image (range 5 to 25), breast-related body image (range 2 to 10) and general sexual functioning (range 15 to 17). A higher score indicates more problems. Reliability was adequate for the three scales (Cronbach’s
Family-related issues.
Openness of communication about the test result in the nuclear family (ie, partner, children) and the family of origin (ie, parents, siblings) was assessed by an adaptation of the Openness to Discuss Cancer in the Family Scale.25 Reliability of the adapted scale was adequate in the nuclear family and in the family of origin (Cronbach’s Risk and test perceptions. Perceived risk perception (" I feel like my chance of breast cancer is. . . ") was rated on a 7-point scale varying from ‘very low’ to ‘very high’. Perceived seriousness of carrying a mutation predisposing for breast/ovarian cancer and having doubts on the validity of the personal genetic test result were assessed with 5-point scale items. Interview data. Consequences of prophylactic surgery on body image, such as satisfaction with naked appearance, were explored in the interview. Also, participants were asked whether genetic predisposition testing and its consequences (ie, prophylactic surgery) had affected the sexual relationship with their partner. Indicated changes were explored. When participants indicated that nothing had changed, we concentrated on how they had adapted to the reconstructed breasts. In the baseline interview shortly after blood sampling, plans for risk management and experiences with breast/ovarian cancer in relatives had been explored in order to predict distress (ie, onset age of cancer, personal involvement, being bereaved).13
Statistical Methods To understand whether cancer-related distress (IES) and cancer worry measured 5 years post-test disclosure were associated with variables measured at baseline, the method of linear regression analysis was conducted with the following variables: having young children; being younger than 40 years; considering prophylactic mastectomy if the patient is a carrier; hereditary cancer-related distress; and experiences with cancer in the family. In all analyses, age, marital and carrier status were adjusted for. The variables that contributed significantly to predicting long-term distress were entered in a multiple regression analysis (method backward), adjusted for age and carrier status. To investigate which variables measured 5 years post-test disclosure were related to cancer-related distress and cancer worry, we followed a similar strategy with openness of family communication, risk perception, seriousness of carriership, having doubts about the validity of the test, and changes in relationships due to testing.
Sample Characteristics No differences were found between carriers and noncarriers on several sociodemographic characteristics (Table 1  ). Of the 23 carriers, 19 had PM and 12 had BSO; all but two underwent PM at the Rotterdam Family Cancer Clinic (Rotterdam, the Netherlands), and 17 had a reconstruction. Two carriers were diagnosed with breast cancer during the follow-up period; in one participant breast cancer was detected by magnetic resonance imaging and one participant was found to have an axillary lymph node metastasis 7 months after prophylactic mastectomy. Also, two noncarriers were diagnosed with breast cancer at age 47 and 58.
Long-Term Psychological Distress and Help-Seeking for Psychological Distress Logistic regression analysis with distress scores measured 5 years after test disclosure revealed no differences between carriers and noncarriers with respect to cancer worry (P = .5; 95% CI, 0.9 to 1.3), hereditary cancer related intrusions and avoidance (P = .5; 95% CI, 0.9 to 1.1; P = .8; 95% CI, 0.9 to 1.1), and on general anxiety and depression (P = .9; 95% CI, 0.9 to 1.1; P = .5; 95% CI, 0.9 to 1.2). Compared to assessments 1 year after disclosure, however, both carriers and noncarriers showed a significant increase in anxiety and depression (P = .009 and P = .005, respectively). The increase in depression tended to be higher for carriers than for noncarriers, but this interaction did not reach significance. The course of anxiety and depression for carriers and noncarriers for whom data were complete on every assessment are depicted in Figures 1 and 2, respectively.
All the women who opted for PM and/or BSO indicated that their fear of developing breast/ovarian cancer had decreased after surgery and most women felt that PM and/or BSO was worth the adverse consequences (79% and 80%, respectively). During the 5 years since genetic test disclosure, 44% of the carriers and 33% of the noncarriers consulted a psychologist, psychiatrist, social worker or a family doctor for psychological support (P = .4; 95% CI, 0.6 to 4.7). The reason for consulting was related to hereditary cancer for 50% (5/10) of the carriers and 29% (4/14) of the noncarriers. Carriers did not report using more psychopharmacological medication since test disclosure than noncarriers (30% and 17% respectively; P = .2; 95% CI, 0.7 to 8.0).
Body Image and Sexual Functioning
In the interviews however, carriers reported more changes in their sexual relationship since genetic test disclosure (  2 = 16.32; P  0.001) than noncarriers. Of the 16 carriers who had undergone PM and/or BSO and who were sexually active, 11 (70%) reported changes in their sexual relationship. The interviewed carriers opting for neither PM nor BSO (aged 33 and 34) did not report changes in their sexual relationship. The reported changes are indicated in Table 2.
Predictive Factors for Long-Term Psychological Distress Results of the backward regression analyses are indicated in Table 3 . Participants with more hereditary cancer-related distress at baseline reported significantly more hereditary cancer-related distress and more cancer worry 5 years later. Moreover, participants with children younger than 15 at baseline showed significantly more hereditary cancer-related distress 5 years later. Participants with one or more relatives who died from breast/ovarian cancer reported more cancer worry 5 years later.
Women who communicated in a less open manner about genetic testing with relatives and who expressed more doubts about the validity of their personal test result had significantly higher levels of hereditary cancer-related distress and cancer worry 5 years following test disclosure. Also, participants who indicated more changes in the relationship with relatives showed significantly more hereditary cancer-related distress, and participants who perceived their risk of breast cancer to be higher reported significantly more cancer worry.
We found that also on the long-term, most women were able to cope with their BRCA1/2 carrier status and with subsequent risk-reducing interventions. Carriers did not differ significantly from noncarriers regarding psychological distress levels, cancer worry, and psychological help-seeking behavior. In carriers and noncarriers, the mean general and hereditary cancer-related distress levels were below the clinical cut-points.14,16 However, both carriers and noncarriers showed an increase in anxiety and depression from 1 to 5 years after genetic test disclosure, whereas carriers almost reached the level of anxiety and depression reported at the time of blood sampling. In addition to this, the utilization of the health care system for psychological support and psychopharmacological medication was considerable. Our results suggest that genetic predisposition testing and prophylactic surgery alter the level of distress temporarily, but that other characteristics determine the intensity of psychological distress on the long-term. One of the most powerful predictors of long-term hereditary cancer-related distress and cancer worry was the level of hereditary cancer-related distress at baseline, a finding that concurs with results of other studies on genetic predisposition testing for late onset diseases.10,11,26,27 The experience with affected relatives was another determinant of cancer worry. We found that women who lost a family member to breast/ovarian cancer tended to be more worried about developing cancer. This finding adds to the emerging evidence on the association between loss experiences and distress levels.22,28 Furthermore, women with young children at baseline reported more distress 5 years later. This may be related to their fear of leaving young children behind and to difficulties with informing children about their cancer risks.29–31 Perceptions of cancer risk and the genetic test also affected distress levels. In line with other studies, women who perceived themselves at higher risk of developing breast cancer were more worried.22,32,33 We also found that having doubts on the validity of the personal test result was associated with more distress and cancer worry. This finding was partly due to the noncarriers who tended to doubt more often than carriers, and whose overestimation of the risk of breast cancer was impressive (60% of the unaffected noncarriers overestimated their risk by > 10%, compared to 29% of the carriers). These results imply that noncarriers of a BRCA1/2 mutation also may have difficulties with adapting to a life without an increased risk of breast/ovarian cancer. This phenomenon has also been seen in noncarriers from families with the dominant inherited late onset neurological disease, Huntington’s Chorea.34 Less openness to discuss the test result with family members was associated with more cancer worry and more distress. Women might experience a lack of social support when the communication on this subject is limited. Studies have shown that support of the partner or relatives is important when coping with an elevated cancer risk.35–37 Also, the women who reported an impact of testing on relationships with relatives (both positive and negative) experienced higher distress. It is, however, unclear how changes in relationships are related to the observed distress. To gain more insight into this aspect, more research is needed on family dynamics and communication about hereditary cancer. Most women in this study expressed their satisfaction with prophylactic surgery, which is consistent with findings from other studies.38–42 A major psychological advantage of prophylactic surgery was the diminished fear of developing cancer, although carriers who opted for prophylactic surgery were less satisfied with their bodies and breasts and reported (in the interview) more problems with sexual functioning than noncarriers. Another point to note is that the carriers who opted for PM while having no partner were very reluctant to start a new relationship after having PM. Our findings should be viewed with the perspective that the reported changes in sexual functioning were not problematic for most women. They frequently stated that it was the price to pay for not dying of cancer at a young age, that sexuality was less important for them than for other people, or that sexuality would become less worthwhile anyway because they were getting older. Life was more valuable for them than breasts, ovaries, and sexuality. The sense of perspective that the women in this study demonstrated can in part result from an attempt to escape from cognitive dissonance.43 Cognitive dissonance theory suggests that an autonomously made decision will be positively evaluated, especially when the decision is difficult to change. Worldwide large variation exists in the appreciation of PM by at risk women and their doctors.44 In the Netherlands and the United Kingdom the demand for this procedure is high, whereas in France and other countries the procedure is rarely performed. This difference is likely related to a more general negative attitude towards PM in these countries. The issue of sexual functioning after prophylactic surgery has received little attention until now. In studies that used questionnaires to address the issue of sexuality, no41 or some40,42 detrimental effects on women’s sexual relationship were found. However, sexual problems and diminished sexual satisfaction have been reported in two interview studies.45,46 Since sexual functioning is an intimate issue, aspects of sexual functioning might be easier expressed in the private atmosphere of an interview than in a questionnaire. We therefore recommend including interviews in future research on the effects of prophylactic surgery. To our knowledge, this is the first long-term psychological follow-up study of women who opted for genetic predisposition testing for BRCA1/2. For a longitudinal study, the dropout was modest (24% dropped out between informed consent and the last assessment) and dropouts were equally distributed among participants with respect to marital status, educational level, having children, and baseline hereditary cancer-related distress. Carriers who opted for PM were, however, overrepresented in our group when compared with the group of identified carriers at our center.4 Furthermore, the groups of women opting for PM or BSO were too small to determine whether PM or BSO had more detrimental effects on sexual functioning. Our impression is that PM has more detrimental effects on body image and BSO on sexual functioning. Future research on the long-term impact of cancer genetic predisposition testing in larger and more representative groups is needed to identify the impact of PM and BSO on sexual functioning separately. Finally, this study exclusively assessed a group of self-selected women who all wanted genetic predisposition testing. In order to learn more about women declining genetic predisposition testing, we asked women who declined but were eligible for testing in our surveillance program to participate in our study.47 This resulted in a group that was too small to be compared with the test acceptors. Consequently, we cannot generalize the results of this study to all women eligible for cancer genetic predisposition testing. Our results have several clinical and practical implications. We recommend that genetic counselors pay additional attention to women with high event-related distress, women who lost one or more family members to breast/ovarian cancer, and women having young children. The issue of how the test-applicant discusses hereditary cancer-related issues with relatives also merits standard evaluation. At genetic test disclosure it might be helpful to provide a copy of the test result to some noncarriers who have difficulties believing the test result and to inform them more extensively on the molecular genetic test procedures used. Before performing prophylactic surgery, it is essential to address the issues of sexuality and body image thoroughly. The way the woman experiences her sexuality and body image should be explored and the possibilities of coping with the consequences of surgery should be discussed. Additional attention is mandatory for single women, because for them, starting a new (sexual) relationship may be problematic. In the follow-up contacts with the specialist after PM and BSO, sexual functioning should be one of the standard issues explored to ensure that women are referred to a sexologist or a psychotherapist when necessary. For the carriers opting for surveillance, no standard psychological follow-up seems mandatory, but future research needs to confirm this.
The authors indicated no potential conflicts of interest.
We thank the participants for their valuable contributions to this study.
This study was supported by the Department of Clinical Genetics, Erasmus MC, the Netherlands.
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41. Hatcher MB, Fallowfield L, A’Hern R: The psychosocial impact of bilateral prophylactic mastectomy: Prospective study using questionnaires and semistructured interviews. BMJ 322:1–7, 2001 42. Tiller K, Meiser B, Butow P, et al: Psychological impact of prophylactic oophorectomy in women at increased risk of developing ovarian cancer: A prospective study. Gynecol Oncol 86:212–219, 2002[CrossRef][Medline] 43. Festinger L: A theory of cognitive dissonance. Stanford, CA, Stanford University Press, 1957 44. Julian-Reynier CM, Bouchard LJ, Evans DG, et al: Women’s attitudes toward preventive strategies for hereditary breast or ovarian carcinoma differ from one country to another. Cancer 92:959–968, 2001[CrossRef][Medline] 45. Lloyd SM, Watson M, Oaker G, et al: Understanding the experience of prophylactic bilateral mastectomy: A qualitative study of ten women. Psychooncology 9:473–485, 2000[CrossRef][Medline] 46. Payne DK, Biggs C, Tran KN, et al: Women’s regrets after bilateral prophylactic mastectomy. Ann Surg Oncol 7:150–154, 2000[CrossRef][Medline] 47. Lodder L, Frets PG, Trijsburg RW, et al: Attitudes and distress levels in women at risk to carry a BRCA1/BRCA2 gene mutation who decline genetic testing. Am J Med Genet 119A:266–272, 2003 Submitted January 16, 2003; accepted August 1, 2003.
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Copyright © 2003 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
= .86, .84, and 0.92, respectively). 
