Determination of Information and Support Needs of First Degree Relatives of Women with Breast Cancer

Background: Breast cancer is the most frequent type of cancer among women in the world and the mostcommon cause of deaths from cancer in females. In Turkey, breast cancer comes first in the list of the mostfrequent ten cancer types seen in women. As the incidence rate of breast cancer is high, many women havingbreast cancer in the family experience the breast cancer at secondhand. This study was carried out in an attemptto determine the information and support needs of women whose first-degree relatives have breast cancer andto what extent these needs are met. Methods: The research sample consisted of 156 women. Questionnaire Formand Information and Support Needs Questionnaires were used as the data collection tools. Results: Informationneed score averages (x̄:3.72±0.19) of women included in the research sampling were found to be higher than theirscore averages of support needs (x̄:3.24±0.41). Conclusion: Information needs which were indicated by womenas very important were related to treatment, symptoms of breast cancer and breast self examination (BSE), whilesupport needs which were indicated by women as very important were learning how to perform BSE, women’sanxiety for themselves and their relatives regarding breast cancer and having their breasts examined by a healthprofessional. It is recommended that nurses and other medical staff should give information to women whosefirst-degree relatives have breast cancer about the disease, its etiology, scanning, diagnosis, treatment optionsand protection as well as prevention.     

Investigation of an interaction of alcohol intake and family history on breast cancer risk in the Minnesota Breast Cancer Family Study

BACKGROUND: One explanation for the variability in results in studies of alcohol consumption and breast cancer could be the presence of effect modifiers, such as genetic susceptibility. The authors examined the interaction of alcohol and family history of breast cancer on breast cancer risk in a population-based family study of 426 multigenerational breast cancer families. The authors evaluated whether alcohol use was a stronger risk factor for breast cancer among sisters, daughters, nieces, and granddaughters of breast cancer probands than among women who married into these families. METHODS: Analyses were performed on surrogate and self-reported data combined and on self-reported data alone. To evaluate the interaction of alcohol and breast cancer risk among women with a family history of breast cancer, the authors performed analyses on all 426 families and on a subset of 132 families that had 3 or more breast and/or ovarian cancers in their family. RESULTS: A total of 9032 blood relatives and marry-ins and 558 breast cancer cases were available for analysis. In the entire 426 families, there was a suggestion of an interaction of relationship to the proband and frequency of alcohol consumption on breast cancer risk (P(interaction) = 0.14) for surrogate and self-reported information combined. Among first-degree relatives of the proband, daily drinkers had a significantly increased risk of breast cancer compared with never drinkers (RR = 2.45 [1.20, 5.02]), but this increase was less evident among second-degree relatives who reported daily alcohol intake (RR = 1.27 [0.73, 2.22]) and was not evident in marry-ins who reported daily use of alcohol (RR = 0.90 [0.42, 1.90]). The findings based on the subset of 132 high-risk families with 3 or more breast and/or ovarian cancers were similar to findings based on all 426 families (P(interaction) = 0.07). An interaction of family history with alcohol use was also suggested when the analyses were restricted to self-respondents, although the interaction test P-value was no longer of borderline significance. CONCLUSION: An increased risk of breast cancer due to an increased frequency of alcohol consumption may be limited to women with a family history of breast cancer.     

Family history and bilateral primary breast cancer

Summary The prevalence of a family history of breast cancer was established in 54 women with bilateral primary breast cancer and 208 women with unilateral disease. Women with bilateral disease had significantly greater prevalence of family history than women with unilateral breast cancer (P<0.01). Compared with the unilateral cancers, a significantly greater proportion of bilateral cancers had first degree affected relatives (P<0.05). Moreover the affected relatives of probands with bilateral disease showed a significantly higher prevalence of bilateral breast cancer compared with the relatives of women with unilateral disease (P = 0.04). The findings suggested that bilateral disease was a characteristic of familial breast cancer.     

First degree relatives of breast cancer patients: screening practices and provision of risk information.

Little is known about breast cancer screening knowledge and behaviors among women with a family history of breast cancer. Data gathered from 125 first-degree relatives of breast cancer patients indicated that only 63.3% of women over age 35 "ever" had a mammogram, 53% of women 40 or older reported a mammogram in the last year, and only 36.8% of all participants reported monthly breast self-exam (BSE). Self-reported BSE competence was generally poor. One hundred five (105) (84%) reported a clinical breast exam over the previous year. Only 71 (56.8%) of the women indicated that they had been asked about their family history of breast cancer by their physician, and minimal information about risk related to family history was provided. Worry about developing breast cancer was positively related to mammography use and BSE competence. Confidence in performing BSE and learning BSE from a physician/nurse were both positively related to competence. Women who believed they had control over finding breast cancer in its early stages reported more frequent BSE. Poor compliance of women with a family history of breast cancer in the practice of BSE and utilization of mammography, and lack of risk information provided by physicians mandate a search for effective intervention.     

Psychological distress in women at risk for hereditary breast cancer: the role of family communication and perceived social support

Background: Hereditary breast cancer has a profound impact on individual family members and on their mutual communication and interactions. The way at‐risk women cope with the threat of hereditary breast cancer may depend on the quality of family communication about hereditary breast cancer and on the perceived social support from family and friends. Objective: To examine the associations of family communication and social support with long‐term psychological distress in a group of women at risk for hereditary breast cancer, who opted either for regular breast surveillance or prophylactic surgery. Methods: The study cohort consisted of 222 women at risk for hereditary breast cancer, who previously participated in a study on the psychological consequences of either regular breast cancer surveillance or prophylactic surgery. General and breast cancer specific distress, hereditary cancer‐related family communication, perceived social support, and demographics were assessed. Results: Using structural equation modelling, we found that open communication about hereditary cancer within the family was associated with less general and breast cancer specific distress. In addition, perceived support from family and friends was indirectly associated with less general and breast cancer‐specific distress through open communication within the family. Discussion: These findings indicate that family communication and perceived social support from friends and family are of paramount importance in the long‐term adaptation to being at risk for hereditary breast cancer. Attention for these issues needs to be incorporated in the care of women at risk for hereditary breast cancer. Copyright © 2010 John Wiley & Sons, Ltd.     

Family history and risk of breast cancer in hispanic and non-hispanic women: the New Mexico Women's Health Study

Objectives: Many epidemiologic studies have demonstrated that an increased risk of breast cancer is associated with positive family history of this disease. Little information had been available on the relationship of breast cancer risk with family history in Hispanic women. To investigate the association of family history of breast cancer on the risk of breast cancer, we examined the data from the New Mexico Women's Health Study (NMWHS), a statewide case–control study. Methods: In this study 712 women (332 Hispanics and 380 non-Hispanic whites) with breast cancer and 844 controls (388 Hispanics and 456 non-Hispanic whites) were included. Conditional logistic regression was used to estimate the odds ratio (OR) and 95% confidence interval (95% CI), adjusted for sociodemographic, medical, and reproductive factors. Results: We found an increased risk in women with a history of breast cancer in one or more first-degree or second-degree relatives (OR = 1.5, 95% CI 1.2–1.9), first-degree relatives (OR = 1.3, 95% CI 1.0–1.8) and second-degree relatives (OR = 1.6, 95% CI 1.2–2.2). Hispanic women had higher risk estimates for a positive family history (OR = 1.7, 95% CI 1.1–2.5) than non-Hispanic white women (OR = 1.4, 95% CI 1.0–2.0); however, the differences were not statistically significant. In both ethnic groups a higher risk was observed in premenopausal women compared with postmenopausal women and women diagnosed with breast cancer before age 50years compared with older women. Conclusions: The results indicate that Hispanic women with a family history of breast cancer are at increased risk of breast cancer.     

Double primary cancers of the breast and thyroid in women: molecular analysis and genetic implications

Multiple primary cancers are characteristic of hereditary cancer syndromes. A familial association between breast and thyroid cancer has been suggested, but a genetic basis for this association has not yet been established. To determine the extent to which double primary cancers of the breast and thyroid are due to common hereditary factors, we conducted a registry- and hospital-based study in Ontario and Quebec. We obtained family histories of 74 women diagnosed with both cancer of the breast and thyroid before 70 years of age. Cancer histories were obtained for the 533 first-degree relatives of these women. The observed cancer rate in the relatives was compared with the expected number, based on age-standardized Canadian cancer incidence rates, and relative risks were estimated. A total of 87 cancers were observed in the relatives, compared to 93.7 expected cancers, giving a relative risk of 0.9 (95% confidence interval (CI): 0.7–1.1). The risk for breast cancer was 1.1 (95% CI: 0.6–1.7) and the risk for thyroid cancer was 0.7 (95% CI: 0–3.8). Blood samples were collected on 53 patients for mutational analysis of the BRCA1, BRCA2, and PTEN genes. One woman was found to be a carrier of a BRCA1 mutation (exon 11 3227delT). Our findings do not support the hypothesis that a significant proportion of double primary cancers of the breast and thyroid are due to hereditary factors.     

Racial/ethnic differences in adequacy of information and support for women with breast cancer

BACKGROUND: Providing breast cancer patients with needed information and support is an essential component of quality care. This study investigated racial/ethnic variations in the information received and in the availability of peer support. METHODS: In total, 1766 women who were diagnosed with nonmetastatic breast cancer and reported to the Los Angeles County Surveillance, Epidemiology, and End Results registry from June 2005 to May 2006 were mailed a survey after initial treatment. Among accrued cases, 96.2% met eligibility criteria (n = 1698), and 72% completed the survey. Race/ethnicity categories were white, African American, and Latinas (2 categories indicating low or high acculturation, which was determined by using the Short Acculturation Scale for Hispanics). Outcomes included receipt and need for treatment-related and survivorship-related information, difficulty understanding information, and support from women with breast cancer. RESULTS: More women reported receiving treatment-related information than survivorship-related information. After adjusting for sociodemographic, clinical, and treatment factors, a higher percentage of low acculturated Latina women desired more information on treatment-related and survivorship-related issues (P < .001). Significantly more Latina low acculturated women than white women reported difficulty understanding written materials, with 74.5% requiring help from others. A higher percentage of all minority groups compared with whites reported no contact with other women with breast cancer (P < .05) and reported less contact through family/friends (P < .05). Women rated the benefit of talking to other women high, particularly with emotional issues. CONCLUSIONS: Continued efforts to provide culturally appropriate information and support needs to women with breast cancer are necessary to achieve quality care. Latinas with low acculturation reported more unmet information and care support needs than women in other racial/ethnic groups.     

Population-based estimates of the relation between breast cancer risk,tumor subtype,and family history

Objective Many studies that have estimated the breast cancer risk attributable to family history have been based on data collected within family units. Use of this study design has likely overestimated risks for the general population. We provide population-based estimates of breast cancer risk and different tumor subtypes in relation to the degree, number, and age at diagnosis of affected relatives. Methods Cox Proportional Hazards to calculate risks (hazard ratios; 95% confidence interval) of breast cancer and tumor subtypes for women with a family history of breast cancer relative to women without a family history among a cohort of 75,189 women age ≥40 years of whom 1,087 were diagnosed with breast cancer from June 1, 2001–December 31, 2005 (median follow-up 3.16 years). Results Breast cancer risk was highest for women with a first-degree family history (1.54; 1.34–1.77); and did not differ substantially by the affected relative’s age at diagnosis or by number of affected first-degree relatives. A second-degree family history only was not associated with a significantly increased breast cancer risk (1.15; 0.98–1.35). There was a suggestion that a positive family history was associated with risk of triple positive (Estrogen+/Progesterone+/HER2+) and HER2-overexpressing tumors. Conclusions While a family history of breast cancer in first-degree relatives is an important risk factor for breast cancer, gathering information such as the age at diagnosis of affected relatives or information on second-degree relative history may be unnecessary in assessing personal breast cancer risk among women age ≥40 years.     

Feasibility of a telephone survey to recruit health maintenance organization members into a tamoxifen chemoprevention trial.

A large-scale, nationwide tamoxifen chemoprevention trial is currently being planned as a primary preventive strategy against breast cancer. The recruitment of health asymptomatic women into a long-term clinical trial will pose unique recruitment problems. This study examines the feasibility of telephone recruitment from a health maintenance organization population into such a trial. A random sample of 203 women aged 50 and older with a personal family history of breast cancer were contacted by telephone. A structured interview was administered to assess self-perceived risk of breast cancer, willingness to participate in a trial, and anticipated barriers to participation. Of the 203 names generated from the health maintenance organization membership roster 128 (63%) met eligibility criteria and participated in the interview. Forty-five % of the eligible women expressed interest in the tamoxifen trial. Women who felt that their family would support their participation expressed significantly more interest, while concern about possible side effects emerged as potential barriers. We conclude that contact by telephone among health maintenance organization members can identify a significant proportion of women who are interested in primary chemoprevention for breast cancer. Participation rates may be improved by bolstering family support and by addressing concerns about drug toxicity.     

The psychosocial needs of breast cancer survivors; a qualitative study of the shared and unique needs of younger versus older survivors

Due to improvements in medical treatment and survival following breast cancer, researchers have turned their attention to investigating the needs of breast cancer survivors. There is disagreement about the extent to which survivors continue to experience psychological morbidity after treatment ends. Whilst the majority of women adjust well to breast cancer, some may have continued psychosocial needs. Available research suggests that younger pre-menopausal women are at increased risk of psychological morbidity following breast cancer. The present study aimed to gather preliminary qualitative data on the psychosocial needs of breast cancer survivors and to identify the shared and unique needs of younger versus older survivors. A qualitative methodology was chosen as this was a relatively unexplored area of enquiry. Patients treated for early-stage breast cancer who had completed their hospital-based treatment 6-24 months prior to participation were recruited. Sampling was discontinued when informational redundancy was achieved. Eighteen telephone interviews were conducted. A wide variety of on-going psychosocial and information needs were reported by breast cancer survivors including support needs, psychological needs, practical needs, physical needs and information needs. Younger women reported more needs than their older counterparts. Several needs reported by younger women were directly related to being of younger age or pre-menopausal at the time of diagnosis. Clinical implications are discussed.     

The Importance of Family History in Breast Cancer Patients in Primary Care Setting: a Cross-sectional Study

Screening recommendations of physicians are important for women to raise awareness about their risk factors and to promote appropriate screening behaviors. However, it seems challenging for primary care physicians (PCPs) to balance disease prevention and diagnosis, treatment. The objective of this study was to describe physicians’ breast cancer consultancy practice including family history, cancer prevention issues for the women they care. This cross-sectional study included 577 women aged above 45 years, free of breast cancer, during their visits to their PCPs. Nearly half of the women reported their visit to PCPs for an annual examination during the year. Among them, 36.1% had first-degree relatives with cancer and 7.3% with breast cancer. But they reported to be asked about family history of cancer and informed about cancer prevention issues 35.1 and 26.4%, respectively. Cancer still seems to be a hard issue to be discussed, even with women visiting PCPs for annual examination. Asking first-degree relative with breast cancer can give PCPs the chance of determining women with increased risk and support women’s appropriate understanding of their own risk in relation to their family history. This routine can make shared-decision making for developing person-centered approach for breast cancer screening possible. Further studies are needed for better understanding of loss of consultancy leadership of physicians for breast cancer.     

Breast cancer risks in women with a family history of breast or ovarian cancer who have tested negative for a BRCA1 or BRCA2 mutation

Genetic testing for mutations in BRCA1 and BRCA2 is available in Canada for women with a significant family history of breast cancer. For the majority of tested women, a BRCA1 or BRCA2 mutation is not found, and counselling regarding breast cancer risk is based on the review of the pedigree. In this prospective study, we estimate breast cancer risks in women with a family history of breast cancer and for whom the proband tested negative for a mutation in BRCA1 or BRCA2. Families with two or more breast cancers under the age of 50 years, or with three cases of breast cancer at any age, and who tested negative for a BRCA1 or BRCA2 mutation were identified. Follow-up information on cancer status was collected on all first-degree relatives of breast cancer cases. The standardised incidence ratios (SIRs) for breast cancer were calculated by dividing the observed numbers of breast cancer by the expected numbers of breast cancers, based on the rates in the provincial cancer registries. A total of 1492 women from 365 families were included in the analyses. The 1492 first-degree relatives of breast cancer cases contributed 9109 person-years of follow-up. Sixty-five women developed breast cancer, compared to 15.2 expected number (SIR=4.3). The SIR was highest for women under the age of 40 (SIR=14.9) years and decreased with increasing age. However, the absolute risk was higher for women between the age of 50 and 70 (1% per year) years than for women between 30 and 50 (0.4% per year) years of age. There was no elevated risk for ovarian, colon or any other form of cancer. Women with a significant family history of breast cancer (ie, two or more breast cancers under the age of 50 years, or three or more breast cancers at any age), but who test negative for BRCA mutations have approximately a four-fold risk of breast cancer. Women in these families may be candidates for tamoxifen chemoprevention and/or intensified breast screening with an MRI.     

Evaluation of the needs and concerns of partners of women at high risk of developing breast/ovarian cancer

This exploratory study investigates the experience of partners of women at high risk of developing breast/ovarian cancer and reports on the partners' views concerning their relationship, communication, future planning, children and childbearing, involvement in decision-making regarding screening and prophylactic measures, and information and support needs. In-depth interviews were conducted with 15 partners. Of these, seven were partners of women who were BRCA1/2 mutation carriers, five were partners of women with unknown mutation status, and three were partners of women who were non-carriers. None of the women had a previous diagnosis of breast or ovarian cancer. Partners of carriers and women with unknown mutation status were found to be more distressed than partners of non-carriers, with partners of mutation carriers reporting the most difficulties. Factors associated with better adjustment and coping for partners included dealing with this situation as a team with their wife, greater involvement in decision-making, satisfaction with their supportive roles and being optimistic. Decision-making difficulties in relation to prophylactic measures, concerns about their children possibly being at increased cancer risk, as well as the need to receive information directly from health professionals and the wish to meet other partners were also discussed.     

Screening of high-risk groups for breast and ovarian cancer in Europe: a focus on the Jewish population

Low breast cancer screening rates are often found among ethnic minority groups and those born outside the host country. This is of particular concern for high-risk groups, who should benefit from ongoing trials aimed at optimizing screening strategies for breast, as well as ovarian cancer. Both of these issues are germane for Jewish women in Europe. We systematically review the literature concerning breast cancer early detection practices (BCEDP) among Jewish women, and examine European surveillance studies of high-risk for breast and/or ovarian cancer that had imaging in the surveillance protocol, in order to assess the likelihood of adequately including women from minority ethnic groups. No studies were found about BCEDP among Jewish women in Europe. Twenty-one research groups from Israel or the US addressed BCEDP among Jewish women. Some Jewish women in the US and Israel, including recent immigrants, are under-screened. Twenty-four research groups reported imaging surveillance of women at increased risk for breast and/or ovarian cancer in Europe. There was a clear benefit to magnetic resonance imaging and/or more intensive screening for women with increased breast cancer risk. Some of these surveillance studies considered ethnic minority groups at high risk, including Jewish women, but none provided adequate outreach to ensure that these groups were included in their programs. The specific screening needs of Jewish and other high-risk ethnic minority groups in Europe have not been met regarding breast and ovarian cancer. A European-wide, population-based approach is suggested, with cultural sensitivity being vital for these efforts.     

Set-up of a population-based familial breast cancer registry in Geneva, Switzerland: validation of first results.

BACKGROUND: This article evaluates the accuracy of family history of breast and ovarian cancer among first-degree relatives of breast cancer patients, retrospectively collected during the setting up of a population-based family breast cancer registry. PATIENTS AND METHODS: Family histories of cancer for all women with breast cancer recorded at the Geneva Cancer Registry from 1990 to 1999 were retrospectively extracted from medical files. The accuracy of these family histories was validated among Swiss women born in Geneva: all 119 with a family history of breast (n = 110) or ovarian (n = 9) cancer and a representative sample of 100 women with no family history of breast or ovarian cancer. We identified the first-degree relatives of these women with information from the Cantonal Population Office. All first-degree relatives, resident in Geneva from 1970 to 1999, were linked to the cancer registry database for breast and ovarian cancer occurrence. Sensitivity, specificity and level of overall agreement (kappa) were calculated. RESULTS: Among 310 first-degree relatives identified, 61 had breast cancer and six had ovarian cancer recorded at the Geneva Cancer Registry. The sensitivity, specificity and kappa of the reported family histories of breast cancer were 98%, 97% and 0.97, respectively. For ovarian cancer, the sensitivity, specificity and kappa were 67%, 99%, and 0.66, respectively. CONCLUSIONS: This study indicates that retrospectively obtained family histories are very accurate for breast cancer. For ovarian cancer, family histories are less precise and may need additional verification.     

Breast Cancer Information Behaviours and Needs among Singapore Women: A Qualitative Study

Background: There is growing evidence on cancer communication and its impact on cancer-related health outcomes; however, little is known about how women gain access to and use breast cancer information in the multi-ethnic Asian context. This paper aimed to explore the breast cancer information acquisition behaviours and needs among Singapore women who attended a community-based health organisation for mammography screening. Methods, design and setting: Qualitative data were collected through semi-structured interviews with 37 racially diverse, aged 50 and above women, who have received mammography screening within the past two years. The interviews were conducted at either the Singapore Cancer Society Clinic or participant’s home. Results: Although cancer information scanning was more prevalent than information seeking (91.9% vs. 62.2%), those who purposively seek information exhibited a higher knowledge level of breast cancer. The most commonly cited sources for information scanning were friends, television and family, and for information seeking were the Internet, pamphlets from a healthcare organisation/ public authority, and healthcare providers. Singapore women were well-informed about the benefits of mammogram; however, specific knowledge, such as modifiable risk factors, reasons for different screening options and the trade-off between harm and benefit, was still lacking which led to confusion about screening. Conclusion: Breast cancer health educational materials should provide clear and balanced information to give women a more accurate or realistic expectation about mammography screening. Study findings provide important implications for breast cancer education and programs to move beyond simply raising awareness and craft specific informative messages addressing the needs of the target group.