Predictors and outcomes of contralateral prophylactic mastectomy among breast cancer survivors

Background Women affected with breast cancer who carry a BRCA1 or BRCA2 (BRCA1/2) mutation are at risk of developing contralateral breast cancer. To reduce the risk of contralateral breast cancer, some patients opt for prophylactic surgery of the unaffected breast (contralateral prophylactic mastectomy, CPM) in addition to mastectomy of the affected breast. Methods We conducted the present study to determine the predictors and outcomes of CPM in the year following BRCA1/2 genetic counseling and testing. Four hundred and thirty-five women affected with unilateral breast cancer who received positive or uninformative BRCA1/2 genetic test results completed assessments prior to genetic counseling and testing and 1, 6, and 12 months after receipt of results. Results Prior to testing, 16% had undergone CPM (in conjunction with mastectomy of the affected breast). In the year following testing, 18% with positive test results and 3% with uninformative test results opted for CPM. CPM following testing was associated with a positive genetic test result, younger age at cancer diagnosis [odds ratio (OR) = 0.94], and higher cancer-specific distress at baseline (OR = 3.28). CPM was not associated with distress outcomes at 12 months. Conclusions Following a positive test result, 18% of women previously affected with unilateral breast cancer had a CPM. Women affected with breast cancer at a younger age, particularly those with positive genetic test results and higher cancer-specific distress, are more likely to choose CPM than women who receive uninformative test results and who are less distressed and older at diagnosis. CPM does not appear to impact distress outcomes.     

Contralateral prophylactic mastectomy for patients with unilateral breast cancer

Patients with unilateral breast cancer are at increased risk of developing a second cancer in the contralateral breast. Some women choose contralateral prophylactic mastectomy (CPM) to prevent cancer in the contralateral breast. Several studies have demonstrated that CPM significantly decreases the occurrence of contralateral breast cancer. However, the effectiveness of CPM at reducing breast cancer mortality is not as clear. Moreover, CPM is not risk free and patients may need to undergo additional surgical procedures, especially if reconstruction is performed. Nevertheless, most patients are satisfied with their decision to undergo CPM. Alternatives to CPM include close surveillance with clinical breast examination, mammography and possibly breast magnetic resonance imaging. Endocrine therapy with tamoxifen or aromatase inhibitors significantly reduces the risk of contralateral breast cancer and may be more acceptable than CPM for some patients. The decision to undergo CPM is complex and many factors likely contribute to its use. Future prospective studies are critically needed to evaluate the decision-making processes leading to CPM.     

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.     

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Patients with unilateral breast cancer are at increased risk for developing cancer in the contralateral breast. As a result, some patients choose contralateral prophylactic mastectomy (CPM) to prevent cancer in the contralateral breast. Several studies have reported that the CPM rates have markedly increased in recent years in the United States. In this article, we will discuss recent CPM trends, potential reasons patients choose CPM, outcomes after CPM, and alternative strategies for managing the increased risk of contralateral breast cancer among survivors of unilateral breast cancer. In addition, we will try to determine if women undergoing CPM are adequately informed about their decision.     

Contralateral prophylactic mastectomy for patients with unilateral breast cancer

Patients with unilateral breast cancer are at increased risk of developing a second cancer in the contralateral breast. Some women choose contralateral prophylactic mastectomy (CPM) to prevent cancer in the contralateral breast. Several studies have demonstrated that CPM significantly decreases the occurrence of contralateral breast cancer. However, the effectiveness of CPM at reducing breast cancer mortality is not as clear. Moreover, CPM is not risk free and patients may need to undergo additional surgical procedures, especially if reconstruction is performed. Nevertheless, most patients are satisfied with their decision to undergo CPM. Alternatives to CPM include close surveillance with clinical breast examination, mammography and possibly breast magnetic resonance imaging. Endocrine therapy with tamoxifen or aromatase inhibitors significantly reduces the risk of contralateral breast cancer and may be more acceptable than CPM for some patients. The decision to undergo CPM is complex and many factors likely contribute to its use. Future prospective studies are critically needed to evaluate the decision-making processes leading to CPM.     

Knowledge of risk management strategies, and information and risk management preferences of women at increased risk for ovarian cancer

Little research is available on the level of knowledge about ovarian cancer risk management options in women at increased risk for this disease. The study objectives were to evaluate this together with the information and ovarian cancer risk management preferences of high-risk women. One hundred and twenty-nine women were assessed after their attendance at one of six familial cancer clinics in relation to knowledge of surveillance and/or preventative strategies for reduction of ovarian cancer risk, preferences for particular strategies, and information preferences. Screening was selected by 57 (44%) women as the preferred risk management option. One hundred and five women (82%) indicated a wish for as much information as possible about ovarian cancer, including both good and bad outcomes and 114 (89%) reported a preference for sharing treatment decisions with their health professional. Participants' knowledge about ovarian cancer risk management options was significantly associated with educational levels (Z = -3.2, p=0.001) and whether or not ovarian cancer was included in the family history (Z = -2.3, p = 0.018). Findings from this present study indicate that women at increased risk of ovarian cancer who attend familial cancer clinics want as much information as possible about this disease and they want to be involved in the decision-making process. Women who reported a lower level of education (no post-school qualifications) may be most likely to benefit from additional educational strategies designed to supplement genetic counseling to improve their knowledge levels.     

Women's experiences with genomic testing for breast cancer recurrence risk

BACKGROUND:

Few studies have examined how patients understand and use genomic test results when deciding about treatment. This study examined how women receive and incorporate results of Oncotype DX, a genomic test that offers recurrence risk estimates, into decisions about adjuvant treatment for early stage breast cancer.

METHODS:

Participants in the cross‐sectional study were 77 women with early stage, estrogen receptor‐positive breast cancer with 0 to 3 positive lymph nodes who received Oncotype DX between 2004 and 2009. Mailed surveys, supplemented by medical chart review, assessed how women received and understood recurrence risk information based on the test.

RESULTS:

The most common test results were low (50%, 34 of 68) or intermediate (37%, 25 of 68) breast cancer recurrence risk. Most women accurately recalled their recurrence risk based on the test (71%) and felt they understood much of what they were told about it (67%). Approximately 25% of women recalled experiencing test‐related distress. Women's perceived recurrence risk was associated with their actual genomic‐based recurrence risks, having had a previous cancer diagnosis, and worry about recurrence. Women with high recurrence risk typically had chemotherapy (78%, 7 of 9), whereas only 2 with a low recurrence risk did (7%, 2 of 30).

CONCLUSIONS:

This is among the first studies to describe patients' experiences with genomic testing for recurrence risk. Although many women understood discussions about their genomic test results, a third reported not fully understanding these discussions, suggesting a need to aid and improve risk communication and treatment decision making. Cancer 2010. © 2010 American Cancer Society.     

Cancer risk reduction and reproductive concerns in female BRCA1/2 mutation carriers

BACKGROUND: Women with mutations in the BRCA1 or BRCA2 cancer susceptibility genes face unique choices regarding management of their high risk for breast and ovarian cancer that impact their reproductive options. In order to explore women's preferences for management of elevated cancer risk, we evaluated the decisions of BRCA1/2 mutation carriers about contraception, prophylactic surgery, and family planning. METHODS: An internet-based questionnaire assessing high-risk women's preferences about cancer risk management and reproductive options was designed, pilot-tested and administered electronically to 284 participants of an internet-based advocacy group for women with BRCA1/2 mutations. RESULTS: Two hundred and thirteen eligible participants completed the majority of the survey. Mean age was 34 years; 66% were BRCA1 mutation carriers and 34% were BRCA2 mutation carriers. Most women (92%) had used oral contraceptive pills. About 88% of responders reported frequent or extreme worry about transmitting the mutation to their children. Despite their high level of worry, few responders said they would likely consider using assisted reproduction technologies such as a pregnancy surrogate (3%), cryopreservation of oocytes or embryos (8%), or pre-implantation genetic diagnosis (PGD) to select embryos without BRCA1/2 mutations (13%). CONCLUSIONS: Although they expressed substantial concern about transmitting BRCA1/2 mutations to their children, only a minority of the high-risk women surveyed were likely to consider currently available assisted reproductive strategies. Further research is necessary to explore the risk management preferences of patients with inherited cancer predisposition, and to incorporate these preferences into clinical care.     

The fertility-related concerns,needs and preferences of younger women with breast cancer: a systematic review

Breast cancer is the most commonly diagnosed type of cancer in reproductive aged women. Adjuvant systemic therapy is recommended in most women and has been demonstrated to reduce the risk of recurrence and increase survival. However, there may be a negative impact of adjuvant systemic therapy on fertility as well as on subsequent quality of life. There are a number of fertility preservation options currently available and relevant information regarding these options should be provided prior to commencing adjuvant treatment. The aim of the review is to identify the fertility-related needs, concerns and preferences of young women with early breast cancer. The databases MEDLINE and EMBASE were searched from 1988 onwards using keywords, and examining reference lists. Of the 499 articles identified, 20 met eligibility criteria and were reviewed. Multiple fertility-related information needs specific to this group regarding menstrual changes and potential infertility attitudes to, and actual decisions made regarding, pregnancy breastfeeding and contraception emerged. Information on fertility-related decisions was rated as important, and the preferred methods for obtaining this information was consultation with a specialist or a decision aid early in the treatment plan. There is limited research about fertility-related needs, and even less on contraceptive preferences and the attitudes of health care providers towards fertility-related issues. No studies describing the development of tools to assist with decisions about fertility-related choices were identified. Young women with early breast cancer have specific fertility- and menopause-related needs and concerns, which are commonly not adequately addressed or discussed prior to commencing adjuvant therapy.     

Retention and use of breast cancer recurrence risk information from genomic tests: the role of health literacy.

BACKGROUND: New genomic technology now allows physicians to provide women with individualized and highly accurate breast cancer recurrence risk estimates that are a key factor in adjuvant (after surgery) therapy decisions. Because these genomic tests are so new, little is known about how well patients understand the tests and their results. METHOD: We interviewed 163 stage I or II breast cancer patients at a routine follow-up appointment. We assessed their health literacy (using the Rapid Estimate of Adult Learning in Medicine) as well as their knowledge of and attitudes towards a genomic test that identifies risk of recurrence in hormone receptor-positive, node-negative breast cancer (the OncoType Dx Recurrence Score). RESULTS: Women with lower health literacy recalled less of the information provided about the recurrence risk test than women with higher health literacy. Health literacy was not related to the amount of additional information women desired. Women with higher health literacy preferred to have a more active role in decisions about the test. Implications: Health literacy may affect women's capacity to learn about the new genomic tests as well as their desire for informed participation in their medical care.     

Concordance between patients' desired and actual decision-making roles in breast cancer care

This study explored breast cancer patients' preferences and experiences for participation in treatment decision making as well as the concordance between patients' actual and desired decision making. The interplay between depression, anxiety and decision-making preferences was also examined.A consecutive sample of primary breast cancer patients was recruited within a week of either surgery or the beginning of neo-adjuvant chemotherapy in two breast cancer centres in Germany. Women were asked to complete a self-explanatory questionnaire.Most patients (40.2%) of the 137 participants preferred the physician to make the treatment decision. A total of 63.4% were able to fulfil their preferred decision-making role. Breast cancer patients who wanted the physician to make the decision and patients who wanted to make the decision on their own were more likely to have their preferences met than patients who wished to share the decision (p < 0.01). Availability of treatment choice and the level of depression influenced the preferred decision-making preference.Limited concordance between desired and actual decision making of patients with collaborative decision-making preferences suggests the need for better communication and physician training on shared decision making.     

Developing an aftercare decision aid; assessing health professionals' and patients' preferences

Personalising aftercare for curatively treated breast cancer patients is expected to improve patient satisfaction with care. A patient decision aid can support women in making decisions about their aftercare trajectory, but is currently not available. The aim of this study was to assess the needs of patients and health professionals with regard to an aftercare decision aid to systematically develop such a decision aid. Focus groups with patients and individual interviews with health professionals were digitally recorded and coded using the Framework analysis. Although most patients felt few aftercare options were available to them, health professionals reported to provide various options on the patients' request. Patients reported difficulty in expressing their need for options to their health professional. Although most patients were unfamiliar with decision aids, the majority preferred a paper‐based patient decision aid, while most health professionals preferred an online tool. The practical implications for the intended patient decision aid are: that a digital tool with paper‐based element should be developed, the patient decision aid should facilitate both rational and intuitive processes and should provide insight in patients' preferences concerning aftercare to discuss these explicitly.     

Experiences and concerns about ‘returning to work’ for women breast cancer survivors: a literature review

Objective: To explore how female breast cancer patients experience work incapacity during the treatment and return‐to‐work phases and how interactions between patients and stakeholders affect this experience. Method: Database search for full text articles published between January 1995 and January 2008 that focused on employed female breast cancer patients, factors related to work incapacity, and returning to work. Only results based on self‐report data were included. Studies focusing on treatment, financial factors, rate of return, or absence were excluded. Results: Six articles met the inclusion criteria. Women with breast cancer receive varied reactions but little advice about returning to work. Women were primarily concerned with disclosing the diagnosis to their employer and to relatives. Uncertainties about physical appearance, ability to work, and possible job loss affected the women's decisions about working during the treatment phase. After treatment, most women wanted to regain their ‘normal life’, but concentration and arm or fatigue problems potentially interfered. Although supportive work environments were helpful, the individual needs of women differed. Employers and employees need to find a balance in defining accommodating work. Many women received favourable support, but some reported feeling discriminated against. Many women re‐evaluated the role of work in their lives after being confronted with breast cancer. Conclusion: Work adjustments could help women to keep their jobs during illness and recovery. To resolve women's concerns about returning to work, employers, physicians, and insurance institutions should consider increasing and improving communication with breast cancer patients and playing a more active and supportive role. Copyright © 2009 John Wiley & Sons, Ltd.     

Factors associated with perceived risk of breast cancer among women attending a screening program

Summary A person's perception of the risk of, or susceptibility to, developing a disease is believed to be an important determinant of health-related behavior, yet little is known about the determinants of perceived risk. Knowledge of these correlates may be useful in identifying and addressing barriers to performance of health behaviors such as mammography screening. Data collected from over 36,000 women participating in a breast cancer screening program in Texas were used to examine the associations between perceived risk of ever getting breast cancer and a number of demographic factors, health-related behaviors, and risk factors for breast cancer. There was a strong positive association between family history of breast cancer and risk perception (OR=11.3, CI=10.34–12.35). Women who reported other risk factors for breast cancer also reported higher perceived risk, but those associations were of lesser magnitude. Age was inversely associated with perceived risk, and black, but not Hispanic, women were more likely to perceive their risk as high compared with white women. Of the health-related behaviors for the early detection of breast cancer, only having had a prior mammogram was associated with perceived risk. Educational interventions to heighten women's awareness of breast cancer risk factors may increase perceived risk in high risk women and influence their decision to undergo screening mammography.     

Factors associated with decisions about clinical BRCA1/2 testing.

Testing for mutations in BRCA1 and BRCA2 can provide important information about breast and ovarian cancer risk to a small but identifiable subgroup of women. Women who test positive for a BRCA1/2 mutation can pursue more aggressive cancer surveillance and prevention regimens. Among families with known mutations, women who test negative may avoid unnecessary interventions. Currently, little is known about the factors associated with the use of clinical BRCA1/2 testing. The objective of this study was to determine the factors associated with decisions about clinical BRCA1/2 testing among women undergoing clinical BRCA1/2 counseling through a retrospective cohort study of women who participated in a university-based clinic offering breast cancer risk assessment, genetic counseling, and BRCA1/2 testing between January 1996 and April 1998. From the 251 eligible women who responded to a follow-up survey, 125 (50%) had undergone or were undergoing BRCA1/2 testing, 86 (34%) had decided not to undergo testing, and 40 (16%) were undecided about testing. After multivariate adjustment, we found that women who chose to undergo BRCA1/2 testing were more likely to have a known familial mutation [odds ratio (OR), 7.46; 95% confidence interval (CI), 0.97-62.16], more likely to be Ashkenazi Jewish (OR, 6.37; 95% CI, 2.68-15.12), more likely to want cancer risk information for family members (OR, 1.93; 95% CI, 0.99-4.14), more likely to want information about ovarian cancer risk (OR, 1.69; 95% CI, 1.18-3.69), and less likely to be concerned about insurance or job discrimination (OR, 0.45; 95% CI, 0.21-0.94). These associations were also found in the subgroup of women with a predicted probability of a BRCA1 mutation of 25%. Our study suggests that approximately half of eligible women choose to undergo clinical BRCA1/2 testing after participating in counseling. Women who have the highest risk of carrying a mutation, and thus the greatest probability of gaining some useful information from the test results, are most likely to undergo testing. Women who undergo testing are also more interested in ovarian cancer risk information and less concerned about job and insurance discrimination.     

The influence of gene expression profiling on decisional conflict in decision making for early-stage breast cancer chemotherapy

BackgroundWomen with early-stage breast cancer, of whom only 15% will experience a recurrence, are often conflicted or uncertain about taking chemotherapy. Gene expression profiling (GEP) of tumours informs risk prediction, potentially affecting treatment decisions. We examined whether receiving a GEP test score reduces decisional conflict in chemotherapy treatment decision making.MethodsA general population sample of 200 women completed the decisional conflict scale (DCS) at baseline (no GEP test score scenario) and after (scenario with GEP test score added) completing a discrete choice experiment survey for early-stage breast cancer chemotherapy. We scaled the 16-item DCS total scores and subscores from 0 to 100 and calculated means, standard deviations and change in scores, with significance (p < 0.05) based on matched pairs t-tests.ResultsWe identified five respondent subgroups based on preferred treatment option; almost 40% did not change their chemotherapy decision after receiving GEP testing information. Total score and all subscores (uncertainty, informed, values clarity, support, and effective decision) decreased significantly in the respondent subgroup who were unsure about taking chemotherapy initially but changed to no chemotherapy (n =33). In the subgroup of respondents (n = 25) who chose chemotherapy initially but changed to unsure, effective decision subscore increased significantly. In the overall sample, changes in total and all subscores were non-significant.ConclusionsGEP testing adds value for women initially unsure about chemotherapy treatment with a decrease in decisional conflict. However, for women who are confident about their treatment decisions, GEP testing may not add value. Decisions to request GEP testing should be personalised based on patient preferences.     

Contralateral prophylactic mastectomy: A qualitative approach to exploring the decision making process

The proportion of women with unilateral breast cancer and no familial or genetic risk factors who elect contralateral prophylactic mastectomy (CPM) has grown dramatically, even in the absence of clear data demonstrating improved outcomes. To further extend the literature that addresses treatment decision-making, qualitative interviews were conducted with eleven women who considered CPM. A social ecological model of breast cancer treatment decision-making provided the conceptual framework, and grounded theory was used to identify the cognitive, psychosocial, and emotional influences motivating treatment choice. This research identified five themes that give context to women's decision-making experience: (1) variability in physician communication, (2) immediacy of the decision, (3) meaning of being proactive about treatment, (4) meaning of risk, and (5) women's relationship with their breasts. The results suggest that greater emphasis should be placed on a more nuanced understanding of patients' emotional reaction to breast cancer and managing the decision-making environment.     

Determinants of Preferences for Genetic Counselling in Jewish Women

Introduction: Patient preferences are central to the economic appraisal of health services. Cancer genetic services are relatively new, and little is known about clients’ preferences. We sought to determine clients’ preferences for genetic service delivery, and to identify factors that predict those preferences. Methods: We studied female participants in the Australian Jewish Breast Cancer Study who were offered a test for ancestral mutations in the BRCA1 and BRCA2 genes. Questionnaires, asking respondents to rank their preferences for functions, or attributes, of genetic counselling were received from 256 women (76% response rate). Results: Sixty-two per cent of the respondents gave their highest preference for information on cancer and genetic risk; 19% gave it to breast and ovarian cancer surveillance; 14% gave it to preparation for testing; and, 5% gave it to direction with decision making. Most ranked direction as their least preferred attribute (53%). Women with a strong cancer family history were less likely to give highest preference to information (52%) and more likely to give highest preference to preparation for testing (22%) (P=0.04; 0.01, respectively). Women with a university degree were less likely to give highest preference to surveillance (15%) (P=0.04). Conclusion: Most women offered testing had highest preference for information and lowest preference for direction. We have identified factors that predict highest preference for information, preparation, and surveillance attributes. Understanding preferences and their predictors may assist cancer genetic services to provide clients with greater benefits from counselling.     

How do women at increased,but unexplained,familial risk of breast cancer perceive and manage their risk? A qualitative interview study

Background

The perception of breast cancer risk held by women who have not had breast cancer, and who are at increased, but unexplained, familial risk of breast cancer is poorly described. This study aims to describe risk perception and how it is related to screening behaviour for these women.

Methods

Participants were recruited from a population-based sample (the Australian Breast Cancer Family Study - ABCFS). The ABCFS includes women diagnosed with breast cancer and their relatives. For this study, women without breast cancer with at least one first- or second-degree relative diagnosed with breast cancer before age 50 were eligible unless a BRCA1 or BRCA2 mutation had been identified in their family. Data collection consisted of an audio recorded, semi-structured interview on the topic of breast cancer risk and screening decision-making. Data was analysed thematically.

Results

A total of 24 interviews were conducted, and saturation of the main themes was achieved. Women were classified into one of five groups: don''t worry about cancer risk, but do screening; concerned about cancer risk, so do something; concerned about cancer risk, so why don''t I do anything?; cancer inevitable; cancer unlikely.

Conclusions

The language and framework women use to describe their risk of breast cancer must be the starting point in attempts to enhance women''s understanding of risk and their prevention behaviour.     

Exploring knowledge,attitudes and experience of genitourinary symptoms in women with early breast cancer on adjuvant endocrine therapy

Clinical trials of adjuvant endocrine therapy in women with early breast cancer have consistently reported that genitourinary symptoms are common. However, little is known about women's experiences of genitourinary symptoms, their views about the symptoms and how they impact on their lives. The aim of this study was to explore knowledge, attitudes and experiences of genitourinary symptoms among women receiving adjuvant endocrine therapy for early breast cancer. Thirty‐two semi‐structured interviews were conducted and subjected to a rigorous qualitative analysis. Genitourinary symptoms were commonly reported to negatively impact on personal, social and physical activities, were often attributed to anxiety and stress and were a source of embarrassment. Women also commented on the limited information available or provided regarding the potential genitourinary adverse effects of adjuvant endocrine therapy. There was a general lack of awareness that their symptoms could be associated with or exacerbated by adjuvant endocrine therapy. Women indicated a preference to receive information and advice about potential management options from either their general practitioner or specialist. These findings underscore the importance of improving communication and increasing awareness among both clinicians and patients about the potential impact of adjuvant endocrine therapy on genitourinary symptoms.