“Take your time, then follow your heart:” Previvors’ advice for communicating about family planning after testing positive for a BRCA genetic variant.

Rauscher, Emily; Dean, Marleah

doi:10.1037/fsh0000312

Cited by 7 publications

(9 citation statements)

References 30 publications

(30 reference statements)

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“…Feelings of isolation were experienced (Reilly, 2014). Younger women were estranged from peers as their lives took different paths (Rauscher & Dean, 2017). They felt angry that BRCA prevented them from being carefree (Reilly, 2014), but also recognised that they needed time to adjust emotionally (Dean & Rauscher, 2017; Reilly, 2014; Young et al, 2017).…”

Section: Resultsmentioning

confidence: 99%

“…Women's anxiety was also fuelled by a fear of removing everything made them a woman (Ross Arguedas et al, 2020). Some were not ready to let go of their femininity and struggled with the impending loss of fertility (Becker, 2017; Dean & Fisher, 2019; Dean & Rauscher, 2017; Puski et al, 2018; Rauscher & Dean, 2017). The “emotional struggle after the mastectomy” was highlighted as the most difficult aspect of surgery (Becker, 2017, p. 66).…”

Section: Resultsmentioning

confidence: 99%

“…Families differed in how they discussed BRCA and family support ranged from good support to just “ a handful” of people women could talk to (Rauscher & Dean, 2017 p. 491). Undergoing testing for BRCA was described as a family expectation for some (Brunstrom et al, 2016).…”

Section: Resultsmentioning

confidence: 99%

“…The challenges facing women are clearly significant and they often report feeling alone with the decisions they must reach (Listøl et al, 2017). Many qualitative studies have reported on the myriad of women's experiences; ranging from their early experiences following testing for BRCA (Brunstrom et al, 2016), their need for information (Dean et al, 2017), the challenges managing their cancer risk over time (Caiata‐Zufferey et al, 2015), experiences following risk‐reducing surgery (Mahat‐Shamir & Possick, 2017), and experiences of communicating their family planning plans (Rauscher & Dean, 2017). Young, Butow, Tucker, et al (2019) also identify that discrepancies exist between women's needs and health professionals' priorities highlighting information gaps and resource needs to improve the care provided to women with BRCA1/2 genetic mutation.…”

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Breast cancer genetic mutation: Synthesis of women's experience

McNamara

Feeney

Giltenane

et al. 2022

Journal of Clinical Nursing

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Testing positive for a BRCA genetic mutation puts women at an increased risk for breast and ovarian cancer .It is estimated that women with BRCA1 gene mutation have a 40% to 87% lifetime risk of developing breast cancer and a 22% to 65% lifetime risk of developing ovarian cancer. For women who have a BRCA2 mutation, the risk is estimated in the region of 18% to 87% lifetime risk for breast cancer and a 10% to 35% lifetime risk of ovarian cancer (Mavaddat et al., 2013). Furthermore, these women have a 50% chance of passing the mutation to their children (National Cancer Institute, 2022).Following confirmation of a BRCA gene mutation, women engage in complex and emotional decision-making regarding risk management. Risk management includes risk-reducing surgery, chemoprevention or ongoing continuous intensive screening (Becker, 2017).

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Breast cancer genetic mutation: Synthesis of women's experience

McNamara

Feeney

Giltenane

et al. 2022

Journal of Clinical Nursing

View full text Add to dashboard Cite

show abstract

“…Available evidence suggests that passive avoidance of risk management is common among men. Although they appear to be open to receiving information on genetic mutations and their consequences for health, they are less likely to actively seek, test and screen for BRCA1/2-related cancer risks, underestimating the likelihood of developing cancer [25,26]. Furthermore, Rauscher et al (2019) [27] found that men were prone to show passive attitudes towards screening, and were less likely to seek information and take action to manage their risk.…”

Section: Introductionmentioning

confidence: 99%

Investigating men’s motivations to engage in genetic screening for BRCA1 and BRCA2 mutations

Annoni

Longhini

2022

PLoS ONE

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BRCA1 and BRCA2 mutations are associated with an increased risk of developing numerous cancers, including breast, ovarian, pancreatic, melanoma and prostate cancer. Men face BRCA-related cancer risks as women do. However, there is considerably less research on the psychological determinants of men engaging in BRCA1/2-related cancer prevention compared to women. The present research aimed to study the determinants of men’s motivations to engage in genetic screening for BRCA1 and BRCA2 through the lens of the Health Action Process Approach. One hundred and twenty-five men (mean age = 58.53 y/o, SD = 10.37) completed an online survey. The intention to undergo genetic screening for BRCA1/2 mutations in men was significantly and positively associated with self-efficacy and risk perception. Moreover, having offspring positively affected intention as well. The relationships between intention (and planning) and positive outcome expectancies, age, and family history of breast-related cancer were not statistically significant. Most information on BRCA1 and BRCA2 mutations is tailored to women due to the availability of effective surgical risk reduction procedures for women’s breast and ovarian cancer. Future research should focus on the best methods of communicating informed decision-making for men facing the risk of such mutations.

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Family planning in carriers of BRCA1 and BRCA2 pathogenic variants

Haddad

Robison

Beffa

et al. 2021

Journal of Genetic Counseling

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BRCA1 and BRCA2 pathogenic variant carriers have a high lifetime risk of developing breast and ovarian malignancies. Given the risks and significant ramifications of undergoing risk-reducing surgeries, many pathogenic variant carriers unaffected by cancer (previvors) struggle with family planning and reproductive decision making. The objective of this study was to determine the attitudes and practices of BRCA1 and BRCA2 pathogenic variant carriers with respect to family planning decision making. A cross-sectional survey was conducted of BRCA1 and BRCA2 previvors at four Northeastern medical centers. The survey was administered electronically via email using REDCap. The survey included demographic information as well as questions about genetic testing, prophylactic surgeries, family planning, and partnering. Data were analyzed with Fisher's exact tests and t tests. The survey was completed by 139 of 422 BRCA1 and BRCA2 pathogenic variant carriers (response rate 33%). Thirteen were excluded from analysis due to self-reported cancer history. Of the remaining 126, 21 (16.7%) were male and 105 (83.3%) were female. Female participants <35 years old at the time of genetic testing were significantly more likely than those 35 or greater to report feeling urgency to have a family after finding out about their BRCA1 and BRCA2 pathogenic variant (p < 0.0001). Younger women also reported their genetic status had a stronger impact on their romantic relationships (p = 0.029). Men were significantly more likely to report that they felt no urgency to have a family compared to women (p < 0.0001). Our study reflects the complex decision making for previvors and the intricacies of family planning in this population. Providers can use this knowledge as a guide to counsel patients about reproductive options.

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“Take your time, then follow your heart:” Previvors’ advice for communicating about family planning after testing positive for a BRCA genetic variant.

Abstract: Previvors who have already had family-planning and genetic-cancer-risk conversations had important advice for newly diagnosed previvors. Practical advice for starting and managing conversations with partners/spouses, family members, and friends are discussed. (PsycINFO Database Record

Cited by 7 publications

References 30 publications

Breast cancer genetic mutation: Synthesis of women's experience

Breast cancer genetic mutation: Synthesis of women's experience

Investigating men’s motivations to engage in genetic screening for BRCA1 and BRCA2 mutations

Family planning in carriers of BRCA1 and BRCA2 pathogenic variants

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