Men with BRCA1 or BRCA2 gene mutations are at increased risk of developing breast cancer
and may have an indication for breast cancer screening using mammography. Since breast
cancer is often viewed as a woman’s disease, visibilizing and understanding men’s
experience of having a BRCA mutation and specifically, of screening for breast cancer
through mammography, were the objectives of this research study.The theoretical framework of interpretive phenomenology guided the process of data
collection, coding, and analysis. Phenomenology is both a philosophy and research method
which focuses on understanding the nature of experience from the perspectives of people
experiencing a phenomenon, the essence of and commonalities among people’s experiences,
and the ways in which people experience the world through their bodies. Data were
collected via in-depth interviews with a purposive sample of 15 male participants
recruited from the Male Oncology Research and Education (MORE) Program.This article reports findings about participants’ use of gender-specific language to
describe their breasts, awareness of the ways in which their bodies changed overtime, and
experiences of undergoing mammograms.This study is the first to describe men with BRCA’s perceptions of their breasts and
experiences of mammography in a high-risk cancer screening clinic. This study sheds light
on an under-researched area—breasts and masculinities—and could potentially lead to
improved clinical understanding of men’s embodied experiences of BRCA, as well as
suggestions for improving the delivery of male breast cancer screening services.
Guidelines recommend that providers engage patients in shared decision-making about receiving incidental results (IR) prior to genomic sequencing (GS), but this can be time-consuming, given the myriad of IR and variation in patients' preferences. We aimed to develop patient profiles to inform pre-test counseling for IR. We conducted semi-structured interviews with participants as a part of a randomized trial of the GenomicsADvISER.com, a decision aid for selecting IR. Interviews explored factors participants considered when deliberating over learning IR. Interviews were analyzed by thematic analysis and constant comparison. Participants were mostly female (28/31) and about half of them were over the age of 50 (16/31). We identified five patient profiles that reflect common contextual factors, attitudes, concerns, and perceived utility of IR. Information Enthusiasts self-identified as "planners" and valued learning most or all IR to enable planning and disease prevention because "knowledge is power". Concerned Individuals defined themselves as "anxious," and were reluctant to learn IR, anticipating negative psychological impacts from IR. Contemplators were discerning about the value and limitations of IR, weighing health benefits with the impacts of not being able to "un-know" information. Individuals of Advanced Life Stage did not consider IR relevant for themselves and primarily considered their implications for family members. Reassurance Seekers were reassured by previous negative genetic test results which shaped their expectations for receiving no IR: "hopefully [GS will] be negative, too. And then I can rest easy". These profiles could inform targeted counseling for IR by providing a framework to address common values, concerns. and misconceptions.
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