Psychosocial functioning in women who have undergone bilateral prophylactic mastectomy

The purpose of this study was to determine the current psychosocial functioning of women who had previously had a bilateral prophylactic mastectomy. Women in the province of Ontario who had undergone prophylactic mastectomy between 1991 and 2000 were asked to complete questionnaires that assessed psychological distress, sexual activity, overall satisfaction with decision to have a prophylactic mastectomy, and body image. Ninety-seven percent of the women were satisfied with their decision to have a prophylactic mastectomy, but young women (<50 years) were less likely to report satisfaction than older women (p=0.001). Women with a strong family history of breast cancer or a BRCA1 or BRCA2 mutation experienced more cancer-related distress than those with a limited family history. Women who had reconstruction following mastectomy reported higher levels of satisfaction with general body shape and appearance than those without reconstruction. In conclusion, the majority of women were satisfied with their decision to undergo prophylactic mastectomy and were not experiencing abnormal levels of psychological distress, low levels of sexual activity, or difficulties with body image.     

Breast cancer risk perception among women who have undergone prophylactic bilateral mastectomy

BACKGROUND: Prophylactic bilateral mastectomy is a preventive option for women who are at high risk of developing breast cancer. We compared the perceptions of breast cancer risk among women who had previously undergone prophylactic bilateral mastectomy with objective estimates of their breast cancer risk. METHODS: We asked 75 women in the Canadian province of Ontario who had undergone prophylactic bilateral mastectomy between 1991 and 2000 to provide a complete family history of the cancers that had occurred by the time of their surgery and to indicate their BRCA1 and BRCA2 gene mutation status. This information was used to generate estimates of each woman's risk for breast cancer by using the Gail model, the Claus model, and the BRCAPRO model. Sixty of the women also provided their own estimates of their lifetime risks of developing breast cancer before and after they had prophylactic mastectomy. Risk estimates were compared using Wilcoxon's signed-rank test and Pearson's product-moment correlation analysis. All statistical tests were two-sided. RESULTS: The women estimated that their lifetime risk of developing breast cancer before surgery was, on average, 76% (range = 20%-100%) and after surgery was 11.4% (range = 0%-60%). The mean estimated absolute risk reduction the women attributed to prophylactic mastectomy was 64.8%. The average computer-generated risk estimates were 59% for the 14 women who reported that they carried a BRCA1 or BRCA2 gene mutation and 17% for the other women (of whom 43 had a strong family history of breast cancer and 18 had a limited family history). Breast cancer risk was statistically significantly overestimated by all women except for the known BRCA1 and BRCA2 gene mutation carriers. CONCLUSION: Women who undergo prophylactic bilateral mastectomy have an exaggerated perception of their breast cancer risk before surgery. Formal genetic counseling and genetic testing may result in more accurate risk perceptions to guide women in choosing other preventive options.     

Surveillance of prophylactic mastectomy

BACKGROUND:

Prophylactic mastectomy, prophylactic oophorectomy, and antiestrogen chemoprevention are currently the only available methods for breast cancer risk reduction. To the authors' knowledge there is little published information regarding the prevalence of prophylactic mastectomy for the primary prevention of breast cancer among high‐risk women or for the prevention of subsequent tumors among women with breast cancer.

METHODS:

The objective of the current study was to examine the frequency of prophylactic mastectomy in New York State between 1995 and 2005 using mandated statewide discharge data combined with data from the state cancer registry.

RESULTS:

Identified were 6275 female residents of New York State receiving prophylactic mastectomy; 19% had no identifiable personal history of breast cancer (including women with lobular carcinoma in situ) and 81% had a personal history of breast cancer (84% with invasive disease and 16% with ductal carcinoma in situ). The increased use of prophylactic mastectomy over time was found to be more pronounced among women with breast cancer compared with those without. Women who underwent prophylactic mastectomies were more likely to be younger and white and to have private insurance compared with women who underwent therapeutic mastectomies and compared with all women with breast cancer. The International Classification of Diseases, Ninth Edition, Clinical Modification diagnostic code for prophylactic mastectomy introduced in 1995 was found to have low sensitivity for identifying prophylactic mastectomies in coded discharge data.

CONCLUSIONS:

The results of the current analysis demonstrate that, although the discharge data alone are inadequate for surveillance purposes, combining these data with the cancer registry data allowed for the detailed examination of the prevalence of prophylactic mastectomies. Mastectomy among high‐risk women for cancer prevention appears to be relatively uncommon, but the use of contralateral mastectomy in women with breast cancer is increasing. Cancer 2009. © 2009 American Cancer Society.     

Understanding the experience of prophylactic bilateral mastectomy: a qualitative study of ten women

Prophylactic bilateral mastectomy represents a new and controversial cancer prevention strategy for women at high-risk of familial breast cancer, the psychosocial implications of which are yet to be fully explored. A qualitative methodology was therefore adopted to provide a discovery-orientated study of the perspectives of ten women who had undergone prophylactic mastectomy and the views of eight of their partners. Each participant was interviewed with the aim of exploring the personal experiences of surgery, factors associated with psychological adjustment and the impact on the family. Data were transcribed and systematically analysed using Grounded Theory. Themes emerging from participants' accounts formed seven significant categories that represented women's key experiences: (i) deciding; (ii) telling; (iii) experiencing surgery and recovering; (iv) maintaining womanliness; (v) processing the loss; and (vi) moving on. The importance of the social context in women's experience and difficulties of isolation/eliciting support were also highlighted: (vii) isolation and being supported. A core category of 'Suffering and countering multiple loss' considered central to women's experience, integrated the seven significant categories and provided further conceptualisation of women's experience. Implications for clinical practice are highlighted.     

Current status of prophylactic mastectomy

The management of women at high risk for breast cancer presents a clinical dilemma to the health-care provider as well as to the woman herself. Current options include surveillance, prophylactic surgery (mastectomy and/or oophorectomy), and/or chemoprevention. Prophylactic mastectomy, including bilateral prophylactic mastectomy in high-risk women or contralateral prophylactic mastectomy in women with primary breast cancer, has been a controversial clinical option. In this review, we address the efficacy of prophylactic mastectomy in reducing the risk of breast cancer in high-risk women, the use of this procedure, surgical complications, and its psychosocial impact. The decision to undergo prophylactic mastectomy is highly personal and must be preceded by an in-depth assessment of the woman's risk of breast cancer, and a thorough discussion of the benefits of the procedure weighed against its potential surgical risks and psychological impact. It is also imperative that the woman be informed of alternative options for management, including chemoprevention, close surveillance, and prophylactic oophorectomy.     

Efficacy of bilateral prophylactic mastectomy in BRCA1 and BRCA2 gene mutation carriers.

BACKGROUND: In women with a family history of breast cancer, bilateral prophylactic mastectomy is associated with a decreased risk of subsequent breast cancer of approximately 90%. We examined the association between bilateral prophylactic mastectomy and breast cancer risk in women at high risk for breast cancer who also had mutations in BRCA1 and BRCA2 genes. METHODS: We obtained blood samples from 176 of the 214 high-risk women who participated in our previous retrospective cohort study of bilateral prophylactic mastectomy. We used conformation-sensitive gel electrophoresis and direct sequence analysis of the blood specimens to identify women with mutations in BRCA1 and BRCA2. The carriers' probabilities of developing breast cancer were estimated from two different penetrance models. RESULTS: We identified 26 women with an alteration in BRCA1 or BRCA2. Eighteen of the mutations were considered to be deleterious and eight to be of uncertain clinical significance. None of the 26 women has developed breast cancer after a median of 13.4 years of follow-up (range, 5.8-28.5 years). Three of the 214 women are known to have developed a breast cancer after prophylactic mastectomy. For two of these women, BRCA1 and BRCA2 screening was negative, and no blood specimen was available for the third. Estimations of the effectiveness of prophylactic mastectomy were performed, considering this woman as both a mutation carrier and a noncarrier. These calculations predicted that six to nine breast cancers should have developed among the mutation carriers, which translates into a risk reduction, after bilateral prophylactic mastectomy, of 89.5%-100% (95% confidence interval = 41.4% to 100%). CONCLUSIONS: Prophylactic mastectomy is associated with a substantial reduction in the incidence of subsequent breast cancer not only in women identified as being at high risk on the basis of a family history of breast cancer but also in known BRCA1 or BRCA2 mutation carriers.     

Bilateral prophylactic oophorectomy and bilateral prophylactic mastectomy in a prospective cohort of unaffected BRCA1 and BRCA2 mutation carriers

BACKGROUND: Women with BRCA1 or BRCA2 (BRCA1/2) mutations can reduce cancer incidence and mortality by using bilateral prophylactic oophorectomy (BPO) or bilateral prophylactic mastectomy (BPM). The availability of these risk-reduction strategies is an important consideration in the decision to undergo genetic testing. PATIENTS AND METHODS: We evaluated the use of BPO and BPM in a prospective sample of 537 female BRCA1/2 mutation carriers from 17 centers in North America and Europe. These women were aged > 30 years, had no BPM, BPO, breast cancer, or ovarian cancer before the disclosure of their genetic test results and were followed for > or = 6 months. RESULTS: Bilateral prophylactic oophorectomy is used significantly more frequently than BPM (55% vs. 21%; P < .001). Bilateral prophylactic oophorectomy was more common among women age > or = 40 years compared with women aged < 40 years (68% vs. 43%; P < .001) and among parous women compared with nulliparous women (60% vs. 39%; P < .001). There was no difference in BPM (P = .83) or BPO (P = .09) in BRCA1 versus BRCA2 carriers. Multivariate models identified age and parity as a predictor of BPO in BRCA1 carriers; age and ovarian cancer family history in BRCA2 carriers; parity and ovarian cancer family history as a predictor of BPM in BRCA1 carriers; and smoking and ovarian cancer family history in BRCA2 carriers. CONCLUSION: Bilateral prophylactic oophorectomy is more commonly used than BPM in unaffected BRCA1/2 mutation carriers. Parity, age, and family history can also influence BPO and BPM uptake. Consistent with current recommendations, BPO is used by the majority of parous women aged > 40 years.     

High satisfaction rate ten years after bilateral prophylactic mastectomy – a longitudinal study

WASTESON E., SANDELIN K., BRANDBERG Y., WICKMAN M. & ARVER B. (2010) European Journal of Cancer Care
High satisfaction rate ten years after bilateral prophylactic mastectomy – a longitudinal study Women from families with an increased risk for breast/ovarian cancer have undergone bilateral prophylactic mastectomy (BPM) since the early 1990s at the Karolinska University Hospital in Sweden. Perceptions of BPM as reported by the first women who underwent the procedure have previously been evaluated on a short‐term basis (1–3 years). The present study aims to evaluate the long‐term (10 years) physical and psychological consequences of BPM in the same cohort of women. Some of the very first women to undergo BPM participated in the present interview study (n= 13). The semi‐structured interviews focused on the women's long‐term experiences related to BPM and immediate breast reconstruction. Overall, the women were satisfied with their decision to undergo BPM and perceived a negligible remaining risk of getting breast cancer. For most women, the operation had not resulted in changes in family life or lifestyle (n= 8), although some described that the relationship with their spouse was affected (8/13), either in a negative (n= 5) or positive (n= 3) way. The cosmetic results were mainly positive (n= 10). Recurrent counselling and support during the whole process of decision, treatment and follow up is recommended.     

Synchronous,bilateral mastectomy

Sixty-four patients (mean age, 51 years) had mastectomies which were synchronous and bilateral. Sixty-one premastectomy biopsies (bilateral, 34 and unilateral, 27) demonstrated the following: invasive carcinoma, 17; noninvasive carcinoma, 24; combination of above, 10; and benign disease, 10. Twenty-two patients had bilateral mastectomy because of bilateral positive biopsy. Twenty-nine patients with unilateral carcinoma on biopsy had bilateral mastectomy. Thirteen patients had bilateral mastectomy despite benign disease only on biopsy (10) or no biopsy (3). Ten unexpected carcinomas (34%) were found in the contralateral breast in the 29 patients with carcinoma diagnosed on unilateral biopsy. The biopsy pathology of these 10 spicemens was invasive ductal carcinoma in 1 and multifocal, noninvasive carcinoma(ductal, 3 and lobular, 6) in 9. An unexpected carcinoma may be found in the contralateral breast in a significant number of patients who are selected for bilateral mastectomy, particularly if the selection is on the basis of a noninvasive, lobular histology. Bilateral mastectomy may be appropriate for such patients, particularly when complicated by a strong family history and breasts which are difficult to assess by physical or mammographic examination.     

Intention to undergo prophylactic bilateral mastectomy in women at increased risk of developing hereditary breast cancer.

PURPOSE: To assess intention to undergo prophylactic bilateral mastectomy and psychologic determinants in unaffected women at increased risk of developing hereditary breast cancer. PATIENTS AND METHODS: Three hundred thirty-three women who were awaiting their initial appointments for risk assessment, advice about surveillance, and prophylactic options at one of 14 familial cancer clinics participated in a cross-sectional, questionnaire-based survey. RESULTS: Nineteen percent of women would consider and 47% would not consider a prophylactic mastectomy, should genetic testing identify a mutation in a breast cancer-predisposing gene, whereas 34% were unsure and 1% had already undergone a prophylactic mastectomy. In a bivariate analysis, women at a moderately increased risk of developing breast cancer had the highest proportion of subjects reporting that they would consider a prophylactic mastectomy (25%), compared with women at high risk (16%) (chi(2) = 7.79; P =.051). In multivariate analyses, consideration of prophylactic mastectomy strongly correlated with high levels of breast cancer anxiety (odds ratio [OR] = 17.4; 95% confidence interval [CI], 4.35 to 69.71; P =. 0001) and overestimation of one's breast cancer risk (OR = 3.01; 95% CI, 1.43 to 6.32; P =.0036), whereas there was no association with objective breast cancer risk (P =.60). CONCLUSION: A significant proportion of women at increased risk of developing hereditary breast cancer would consider prophylactic mastectomy. Although prophylactic mastectomy may be appropriate in women at high risk of developing breast cancer, it is perhaps less so in those who have a moderately increased risk. Such moderate-risk women are likely to benefit from interventions aimed at reducing breast cancer anxiety and correcting exaggerated breast cancer risk perceptions.     

Women's decision-making roles regarding contralateral prophylactic mastectomy

BACKGROUND: Contralateral prophylactic mastectomy (CPM) is the removal of a nonaffected breast in a woman with unilateral breast cancer and is effective in reducing the risk of recurrences. Little is known about women's decision-making roles regarding CPM. METHODS: Women aged 18-80 years with CPM performed at one of six health maintenance organizations between 1979 and 1999 were surveyed. We determined women's reported decision-making roles at the time of CPM, analyzed their trends over time, and explored the association between decision-making roles and psychosocial outcomes following CPM. RESULTS: We received 562 responses (response rate = 73%); 431 completed items needed for this analysis. Most respondents were white, younger than 55 years at CPM, married, and had CPM within 10 years of completing the survey. Forty-five percent made the decision to undergo CPM alone, 37% considered their doctor's opinion, 15% shared the decision with their doctor and only 3% reported their doctor primarily made the decision. Women reporting active roles were more likely to be younger (P<.0008), college educated (P<.0001) and have CPM more recently (P = .002). Compared with those sharing the decision with their doctors, women with active roles were twice as likely to be satisfied 6 months following CPM (odds ratio [OR] = 2.2, 95% confidence interval [CI] = 1.1 to 4.2) and report current concern about breast cancer (OR = 1.9, 95% CI = 1.0 to 3.4). CONCLUSIONS: Most women reported active or shared roles in decision making regarding CPM, particularly younger women, those with college education, and those with recent CPM. Women with active roles were more often satisfied in the short term but were also more likely to report current concern about breast cancer. Whether higher concern is related to insufficient input from clinicians should be explored. Prospective data are needed.