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Originally published as JCO Early Release 10.1200/JCO.2005.09.233 on October 3 2005 © 2005 American Society of Clinical Oncology. Satisfaction After Contralateral Prophylactic Mastectomy: The Significance of Mastectomy Type, Reconstructive Complications, and Body AppearanceFrom the Divisions of Medical Oncology, Statistics, Plastic and Reconstructive Surgery, Internal Medicine, and Surgery and Surgical Specialties, Mayo Clinic, Rochester, MN; and Cancer Prevention and Control Division, Moffitt Cancer Center and Research Institute, Tampa, FL Address reprint requests to Marlene H. Frost, RN, PhD, Mayo Clinic, 200 First St SW, Charlton 6, Rochester, MN 55905; e-mail: frost.marlene{at}mayo.edu
PURPOSE: Contralateral prophylactic mastectomy (CPM) is one option for reducing the risk of a second breast cancer in women with a personal and family history of breast cancer. Few data are available regarding satisfaction, psychological, and social function after CPM. The purpose of this research is to evaluate women’s long-term satisfaction with CPM, factors influencing satisfaction, and psychological and social function after CPM. PATIENTS AND METHODS: This was a descriptive study of all women with a family history of breast cancer, known to be alive, who elected CPM at Mayo Clinic (Rochester, MN) between 1960 and 1993 (n = 621). Ninety-four percent of the women (n = 583) completed a study-specific questionnaire. RESULTS: A mean of 10.3 years after the procedure, the majority of women (83%) were satisfied with their CPM. A smaller number were neutral (8%) or dissatisfied (9%). Women who had a subcutaneous mastectomy had more problems with reconstruction, and fewer of these women were satisfied than women with simple mastectomy. Decreased satisfaction with CPM was associated with decreased satisfaction with appearance, complications with reconstruction, reconstruction after CPM, and increased level of stress in life. The majority of women experienced no change or favorable effects in self-esteem (83%), level of stress in life (83%), and emotional stability (88%). Satisfaction with body appearance, feelings of femininity, and sexual relationships were the most adversely affected with 33%, 26%, and 23% of the women responding negatively. CONCLUSION: Although most women are satisfied with CPM, each woman should weigh the benefits alongside the potential adverse effects.
Women with a strong family history of breast cancer who develop breast cancer face complex decisions about treatment of the initial breast cancer and management of their increased risk for a second primary cancer. It is important that women making these decisions have information about the likely efficacy, psychological, and social outcomes of their options. The risk of a contralateral breast cancer in the general population of women with a prior breast cancer is approximately 0.7% to 1% per year, with a cumulative lifetime risk of approximately 15%. The risk increases significantly among women known to have inherited mutations in BRCA1/2, with an incidence of 12% to 20% at 5 years of follow-up1-2 and a cumulative risk of 52% by age 70 years.3 Young women with BRCA1 alterations who are less than 50 years old at the time of their first breast cancer have a 40% risk of a second primary at 10 years of follow-up.4 These high-risk women have several options to manage their contralateral risk. These include screening, chemoprevention, prophylactic oophorectomy, and contralateral prophylactic mastectomy (CPM). Each of these options has unique benefits and risks. CPM reduces the risk of contralateral breast cancer in women with a personal and family history of breast cancer by approximately 95%,5 but little is known about how this approach may affect a woman’s long-term quality of life. Information about how satisfied women are with this procedure, how the procedure affects psychological and social function, how reconstruction affects satisfaction with CPM and satisfaction with body appearance, and how the procedure affects women’s level of stress are important considerations for women who are making these decisions. With a unique-single institution cohort, we addressed several questions. What reasons do women identify for electing CPM? How satisfied are women after CPM? What factors are associated with satisfaction/dissatisfaction after CPM? How does reconstruction affect satisfaction after CPM? How does CPM affect women’s long-term psychological and social function? How does CPM affect women’s level of stress?
Sample We identified a cohort of 792 women through the Mayo Clinic Surgical Index with both a personal and family history of breast cancer who underwent CPM between 1960 and 1993 at Mayo Clinic (Rochester, MN). A study-specific questionnaire was mailed to those women known to be alive at the time of the study. Initial nonresponders received a second mailing and, if necessary, a telephone call. Details characterizing the study population have previously been reported.5 The protocol and all patient-contact materials and procedures were approved by the Mayo Clinic Institutional Review Board.
Questionnaire Face validity, question clarity, and inclusiveness of the queries were established by a panel of experts from the fields of medicine, psychology, nursing, survey research, and biostatistics. We then piloted the questionnaire with women who had prophylactic mastectomy. They indicated that the items were clear and inclusive.
Data Analysis
Of the 792 women with a personal and family history of breast cancer who had CPM between 1960 and 1993, 621 were living at the time of this study and were invited to participate by completing our study-specific questionnaire. Ninety-four percent of the women (n = 583) participated. There was a mean of 10.3 years of follow-up after CPM. Forty-two percent of the women (n = 244) had a subcutaneous mastectomy with reconstruction, 1% (n = 5) had subcutaneous mastectomy without reconstruction, 27% (n = 158) had simple mastectomy with reconstruction, and 30% (n = 176) had simple mastectomy without reconstruction. Ninety-eight percent of the women (n = 396) who elected reconstruction had implants, whereas 2% (n = 6) had transverse rectus abdominal myocutaneous reconstruction. Demographic and surgical data are listed in Table 1.
Stated Reasons for CPM Cancer in the other breast was cited most frequently as the number one reason for CPM (72% of women), followed by physician’s advice (59%) and family history (40%). Eighty-four percent of the women reported more than one reason for CPM, and 57% reported three or more reasons for choosing CPM. The combination of reasons most frequently cited included cancer in the other breast, family history, and physician’s advice.
Satisfaction With CPM
Open-Ended Comments About Satisfaction We used an open-ended question to ask women about their reasons for satisfaction/dissatisfaction with their CPM. Women who were satisfied or very satisfied with their CPM most frequently reported peace of mind, satisfaction with cosmetic results, the absence of problems with the procedure, or the benefit of risk reduction. Women who were dissatisfied or very dissatisfied most frequently reported dissatisfaction with cosmetic results, adverse symptoms or complications, or diminished body image.
Surgical Procedure, Reconstruction, Level of Stress, Body Appearance, and Other Variables Associated Most Strongly With Satisfaction With CPM
Stepwise multiple regression revealed strong associations between dissatisfaction with CPM and decreased satisfaction with body appearance, the need for reoperation because of complications with reconstruction, having reconstruction after CPM, and increased levels of stress in life after CPM. This combination of variables explained 25% of the variance in level of satisfaction with CPM (Table 2).
Variables Most Strongly Associated With Choosing CPM Again Stepwise multiple regression revealed strong associations between the women less likely to choose CPM again and diminished sexual relationships, increased level of stress after CPM, having a subcutaneous mastectomy, diminished feelings of femininity after CPM, and not being married. This combination of variables explained 22% of the variance in women’s willingness to choose CPM again (Table 3).
Psychological and Social Impact of CPM Overall, the majority of women reported no change or favorable effects in sense of femininity (57% and 17%, respectively), sexual relationships (70% and 7%, respectively), stress in life (58% and 25%, respectively), emotional stability (65% and 23%, respectively), and self-esteem (57% and 26%, respectively). Forty percent of the women reported no change with satisfaction with body appearance, and 27% reported a favorable change. Some women experienced adverse outcomes on the psychological and social variables. Body appearance was negatively affected in 33% of women. Additionally, some women experienced adverse outcomes in relation to sense of femininity (26%), sexual relationships (23%), stress in life (17%), emotional stability (12%), and self-esteem (17%; Fig 4).
Psychological and social outcomes were not significantly associated with age at CPM, length of follow-up, or extent of family history. Changes in self-esteem were strongly correlated with changes in satisfaction with body appearance (r = 0.74), feelings of femininity (r = 0.71), and sexual relationships (r = 0.50). Changes in satisfaction with body appearance were also strongly correlated with changes in feelings of femininity (r = 0.71) and sexual relationships (r = 0.46). Feelings of femininity were correlated with sexual relationships (r = 0.60). Level of stress was negatively correlated with self-esteem (r = –0.33), satisfaction with appearance (r = –0.38), feelings of femininity (r = –0.30), sexual relationship(s) (r = –0.23) and emotional stability (r = –0.21; Table 4).
Paradoxically, although more women with simple mastectomy were satisfied with CPM, decreased satisfaction with body appearance was more common in women who had simple mastectomy with reconstruction (38%) and simple mastectomy without reconstruction (36%) than women with subcutaneous mastectomy (29%; P = .029 and P = .001, respectively). Likewise, more women with subcutaneous mastectomy reported an increase in self-esteem (35%) and sense of femininity (36%) compared with women who had simple mastectomy without reconstruction (12%, P = .003; and 4%, P = .0004, respectively) and women who had simple mastectomy with reconstruction (26%, P = .19; and 28%, P = .019, respectively). There were no additional significant changes between women with simple mastectomy with or without reconstruction and women who had subcutaneous mastectomy.
Surgical Complications
A high-risk woman who develops breast cancer is faced with complex decisions about the treatment of her cancer and her risk for cancer in the contralateral breast. Although data on the efficacy of CPM have been reported,5 we had limited information about women’s satisfaction and psychological and social function after CPM. With this study, we provide long-term follow-up of a cohort of women with a personal and family history of breast cancer who elected CPM. The majority of women, at a mean of 10.3 years after their CPM, reported satisfaction with the procedure and that they would likely elect CPM again. The majority of women reported favorable effects or no change in satisfaction with body appearance, feelings of femininity, sexual relationships, self-esteem, level of stress in life, and overall emotional stability. Body appearance was the area that was rated negatively most frequently. The top three reasons for having CPM included cancer in the other breast, physician’s advice, and family history. The variables most strongly associated with dissatisfaction with CPM included decreased satisfaction with body appearance, reconstructive problems, reconstruction after CPM, and increased stress. The variables strongly associated with less likelihood of choosing CPM again included diminished sexual relationships, increased level of stress after CPM, having a subcutaneous mastectomy, diminished feelings of femininity after CPM, and not being married. The type of mastectomy affected women’s satisfaction with CPM and body appearance. More women with subcutaneous mastectomy than women with simple mastectomy were dissatisfied with CPM and would not choose CPM again. Paradoxically, more women with subcutaneous mastectomy reported that they were satisfied with their body appearance. The basis for the apparent difference in satisfaction with CPM may be reconstruction and the possible complications associated with reconstruction. Most women with subcutaneous mastectomy (98%) had reconstruction compared with only 48% of women who had simple mastectomy. As an entire group, women with subcutaneous mastectomy had more reoperations than women with simple mastectomy, which is a difference that continued to be significant when examining only women who had reconstruction. The significant impact of surgical complications cannot be overlooked. The need for a reoperation was associated with dissatisfaction. Twenty-seven percent of the women in this study reported at least one reoperation, including 43% of women with subcutaneous mastectomy and 15% of women with simple mastectomy. Subcutaneous mastectomy was performed more commonly historically and during the study period than it is presently. The current preferred prophylactic procedure for women at high risk of breast cancer is a simple mastectomy.7-9 This procedure allows more complete removal of breast tissue than subcutaneous mastectomy. Advances in breast and nipple reconstruction will also likely contribute to increased satisfaction with body appearance after simple mastectomy. Consistent with our BPM data,6 women who did not have reconstruction reported the highest level of satisfaction. On one level, this is likely the result of these women placing less emphasis on their breasts when defining themselves. In our study, fewer women with simple mastectomy and no reconstruction experienced a decreased sense of femininity than women with simple mastectomy who had reconstruction. Additionally, women who did not elect reconstruction would not be exposed to problems with reconstructive surgery or implant concerns. The majority of women reported no change or favorable effects in their level of stress as a result of the CPM; however, 17% reported adverse effects. Increased level of stress was strongly associated with dissatisfaction with CPM. Level of stress may be a cumulative result of adverse effects on psychosocial variables. An increased level of stress was associated with decreases in self-esteem, satisfaction with appearance, feelings of femininity, sexual relationships, and emotional stability. Comparisons can be drawn between the current data and our previously reported BPM data.6 Excluding the reason of cancer in the other breast, the same three reasons (physician’s advice, family history, and nodular breasts) were the most commonly cited for the prophylactic procedure in both the CPM and BPM groups. Women with CPM and BPM reported similar levels of adverse effects on all of the psychological and social function variables. Clearly, the diagnosis of cancer provides a different platform for decision making in the CPM group than for unaffected women who elect BPM. Women who elected CPM, unlike the BPM group, have experienced a diagnosis of cancer that necessitated surgery on one of their breasts. Our data on satisfaction substantiate differences between CPM and BPM. More women with CPM (83%) compared with BPM (70%) were satisfied, and fewer women with CPM (9%) compared with BPM (19%) were dissatisfied with their procedure. However, the factors that influenced satisfaction were similar in women with BPM and those with CPM. Body appearance, reconstructive complications, reconstruction after the procedure, and level of stress in life were strongly associated with satisfaction in both the BPM and CPM cohort. Only one variable strongly associated with dissatisfaction, that of increased stress as a result of CPM, entered into the model for less likelihood of choosing CPM again. Dissatisfaction with body appearance, the variable most strongly associated with dissatisfaction with CPM, did not enter the regression model for choosing CPM again. Thus, although body appearance plays a significant role in terms of dissatisfaction with CPM, it is not strongly associated with whether or not a woman would elect CPM again. However, the related variables of sexual relationships and sense of femininity did enter the model. Those who experienced diminished sexual relationship(s) or diminished feelings of femininity were less likely to choose CPM again. Women who had a subcutaneous mastectomy were less likely to elect CPM again. We know that fewer women with subcutaneous mastectomy (76%) were satisfied with their CPM compared with women with simple mastectomies with (84%) or without (90%) reconstruction. Additionally, women with subcutaneous mastectomy had more reoperations than women with simple mastectomy. Women who were not married at the time of the survey were less likely to elect CPM again. To our knowledge, our study is the only cohort study examining patient satisfaction and psychological function after CPM. Montgomery et al10 queried a convenience sample of 296 women who responded to an advertisement published in selected magazines that solicited women who had prophylactic mastectomy. They too found that women reported few regrets after CPM. Also consistent with our data, they noted that poor cosmetic results and a diminished sense of sexuality were associated with dissatisfaction. Montgomery et al10 reported lack of education about the procedure and options as a reason for regret. This concern did not arise in our open-ended questions about reasons for level of satisfaction with CPM. High satisfaction with surgical decisions has been reported in a similar population of women who have elected reconstruction after mastectomy.11-14 Specific percentages were reported for women who would choose the same reconstructive procedure again. At a mean of 2.5 to 6 years after surgery, 88% to 91% of the women said they would choose the same reconstructive procedure.11,14 These percentages are 4% to 7% higher than the percentage found in our population of women who would choose to have CPM again. Satisfaction with body appearance in women with mastectomy and reconstruction, as in our study, was the psychological variable most negatively affected. Only 71% of the women reported that they were satisfied with their body appearance.14 There are limitations to a retrospective study of this type. We collected data at one point in time with no presurgery baseline data. Thus, we do not know whether women could have experienced adverse effects on the various psychological and social variables before their CPM. The retrospective design also negates the ability to determine whether a response shift occurred. A response shift is defined as a change in one’s evaluation of a specific situation resulting from a change in internal standards of measurement, in values, or in how the situation is defined.15 After a diagnosis of breast cancer, women frequently report a change in their priorities, how they look at life, and what they value. As a result, what used to be identified as stressful or a factor that caused dissatisfaction may no longer be identified as such. Thus, response shift could contribute to the high level of satisfaction that these women report. Retrospective recall is also a concern because occurrences subsequent to their CPM, positive or negative, may erroneously be attributed to the CPM. We acknowledge that satisfaction levels may have been influenced by personality traits, which we did not measure in our study. Additionally, cognitive dissonance may have influenced satisfaction levels. Cognitive dissonance is an unpleasant emotional state created by an inconsistency between actions and attitudes. Cognitive dissonance theory holds that individuals will change attitudes and behaviors so that emotional discomfort is eliminated.16 For women who elected CPM, regret about having the procedure may cause emotional discomfort. In an attempt to decrease that discomfort, women may rationalize their satisfaction with CPM. Our study is also limited by our measurement. We devised these single-item questions for use in our previous research on satisfaction, psychological, and social outcomes after BPM. These items have not gone through the reliability and validity testing of an established instrument. We can only claim face validity of the items. Genetic testing was not available at the time our study participants made the decision to have their CPM. Today, many women with a new diagnosis of breast cancer and a concerning family history are interested in genetic counseling and BRCA1/2 testing before making the decision about their primary surgical therapy. Studies have shown that these BRCA1/2 test results have, in turn, influenced decisions about definitive surgical approach. Women identified as BRCA1/2 carriers are more likely to elect therapeutic mastectomy and CPM than women with uninformative results or women who declined testing.17-19 Conducting BRCA1/2 testing before surgery can minimize second surgeries for mastectomy(ies) and unnecessary radiation treatment.17 However, a substantial number of women choose not to be tested because of insurance and cost issues, assuming that their personal cancer occurrence identifies them as a carrier of whatever predisposition might be present in the family. Additionally, of the women who proceed with testing, many have uninformative results, which has been reported to be as high as 81%.17 This leaves them in a situation rather analogous to our patient population (obviously aware that they have had breast cancer and also aware of their family history). In conclusion, CPM is one option to reduce contralateral risk of cancer for high-risk women with a diagnosis of a first breast cancer. The majority of women are satisfied with this procedure and would elect to have CPM again. More women with subcutaneous mastectomy than women with simple mastectomy were dissatisfied with CPM and would not choose CPM again. The benefits of this procedure should be weighed by each woman along side the potential adverse effects. Among adverse effects, the need for reoperation, especially after implant reconstruction, and possible adverse effects on body appearance must be considered.
The authors indicated no potential conflicts of interest.
We thank all the participants in this study for their assistance in addressing these questions; Ann Harris, BA, and members of the Survey Research Center for their expertise and help in patient follow-up; and biostatistics personnel for data entry and data management.
Supported in part by Grant No. R01-80181 from the National Cancer Institute, Grant No. DAMD17-94-J-4216 from the Department of Defense, the Andersen Foundation, and Lonabelle "Kappie" Spencer. Presented in part at the 39th Annual Meeting of the American Society for Clinical Oncology, Chicago, IL, May 31-June 3, 2003; and the 10th Annual Meeting of the International Society for Quality of Life Research, Prague, Czech Republic, November 12-17, 2003. Authors’ disclosures of potential conflicts of interest are found at the end of this article.
1. Verhoog LC, Brekelmans CTM, Synaeve C, et al: Survival and tumour characteristics of breast-cancer patients with germline mutations of BRCA1. Lancet 351:316-321, 1998[CrossRef][Medline]
2. Verhoog LC, Brekelmans CT, Seynaeve C, et al: Survival in hereditary breast cancer associated with germline mutations of BRCA2. J Clin Oncol 17:3396-3402, 1999
3. Breast Cancer Linkage Consortium: Cancer risks in BRCA2 mutation carriers: The Breast Cancer Linkage Consortium. J Natl Cancer Inst 91:1310-1316, 1999 4. Verhoog LC, Brekelmans CT, Seynaeve C, et al: Contralateral breast cancer risk is influenced by the age at onset in BRCA1-associated breast cancer. Br J Cancer 83:384-386, 2000[CrossRef][Medline]
5. McDonnell SH, Schaid DJ, Myers JL, et al: Efficacy of contralateral prophylactic mastectomy in women with a personal and family history of breast cancer. J Clin Oncol 19:3938-3943, 2001
6. Frost MH, Schaid DJ, Sellers TA, et al: Long-term satisfaction and psychological and social function following bilateral prophylactic mastectomy. JAMA 284:319-324, 2000
7. Rebbeck TR, Friebel T, Lynch HT, et al: Bilateral prophylactic mastectomy reduces breast cancer risk in BRCA1 and BRCA2 mutation carriers: The PROSE Study Group. J Clin Oncol 22:1055-1062, 2004
8. Hartmann LC, Degnim A, Schaid DJ: Prophylactic mastectomy for BRCA1/2 carriers: Progress and more questions. J Clin Oncol 22:981-983, 2004
9. Meijers-Heijboer H, van Geel B, van Putten WL, et al: Breast cancer after prophylactic bilateral mastectomy in women with a BRCA1 or BRCA2 mutation. N Engl J Med 345:159-164, 2001 10. Montgomery LL, Tran KN, Heelan MC, et al: Issue of regret in women with contralateral prophylactic mastectomies. Ann Surg Oncol 6:546-552, 1999[CrossRef][Medline] 11. Giu GP, Tan S, Faliakou, et al: Immediate breast reconstruction using biodimensional anatomical permanent expander implants: A prospective analysis of outcome and patient satisfaction. Plast Reconstr Surg 111:125-138, 2003 12. Harcourt DM, Rumsey NJ, Ambler NR, et al: The psychological effect of mastectomy with or without breast reconstruction: A prospective, multicenter study. Plast Reconstr Surg 111:1060-1068, 2003[CrossRef][Medline]
13. Hartl K, Janni W, Kastner R, et al: Impact of medical and demographic factors on long-term quality of life and body image of breast cancer patients. Ann Oncol 14:1064-1071, 2003 14. Kovacs L, Papadopulos N, Ammar S, et al: Clinical outcome and patients’ satisfaction after simultaneous bilateral breast reconstruction with free transverse rectus abdominis muscle (TRAM) flap. Ann Plast Surg 53:199-204, 2004[CrossRef][Medline] 15. Sprangers MA, Schwartz C: Integrating response shift into health-related quality of life research: A theoretical model. Soc Sci Med 48:1507-1515, 1999 16. Festinger LA: A theory of cognitive dissonance. Palo Alto, CA, Stanford University Press, 1957
17. Schwartz MD, Lerman C, Brogan B, et al: Impact of BRCA1/BRCA2 counseling and testing on newly diagnosed breast cancer patients. J Clin Oncol 22:1823-1829, 2004 18. Stolier AJ, Fuhrman GM, Mauterer L, et al: Initial experience with surgical treatment planning in the newly diagnosed breast cancer patient at high risk for BRCA1 or BRCA2 mutation. Breast J 10:475-480, 2004[CrossRef][Medline]
19. Weitzel JN, McCaffrey SM, Nedelcu R, et al: Effect of genetic cancer risk assessment on surgical decisions at breast cancer diagnosis. Arch Surg 138:1323-1328, 2003 Submitted December 13, 2004; accepted May 13, 2005.
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Copyright © 2005 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
2 test. We collapsed the psychological and social function responses into a favorable effect, no change, or an adverse effect on function. Satisfaction with prophylactic mastectomy and choice to have this procedure again were rated on a 5-point scale as follows: very positive, positive, neither, negative, and very negative. Multiple linear regression was used to determine which variables were independently associated with women’s satisfaction with their choice to have CPM. Independent variables included age at prophylactic mastectomy, length of time since the procedure, number of prior biopsies, marital status, the six psychological and social variables, reasons for electing CPM, type of surgical procedure, whether reconstructive surgery was done, immediate versus delayed reconstruction, number of surgical complications after CPM, and problems with implants. Psychological, social, and satisfaction variables were treated as interval data for multiple regression. Ordinal logistic regression was used to confirm the validity of the linear regression model. We examined differences in satisfaction and psychological and social function based on age and length of time since procedure using correlations and responses by year. Open-ended questions were coded for themes and concepts, and frequencies were tabulated. Ten percent of the questionnaires were recoded with acceptable intrarater reliability (r = 0.97). 
