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“Second-Class Status?” Insight into Communication Patterns and Common Concerns Among Men with Hereditary Breast and Ovarian Cancer Syndrome

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Journal of Genetic Counseling

Abstract

Hereditary breast and ovarian cancer syndrome (HBOC) is a cancer predisposition syndrome that affects both men and women, with more significant cancer risk elevations in women. Dissemination patterns regarding familial genetic risk information among females with HBOC are fairly well defined, but knowledge about how males share this information is limited. We interviewed 21 people primarily Ashkenazi Jewish men who were accrued via listserv email through Facing Our Risk of Cancer Empowered (FORCE). Interviews focused on family cancer history, experiences with cancer and genetic testing, motivations to pursue genetic testing and subsequently disclose genetic test results, information-sharing patterns, health care provider response, and participants’ emotional support systems. The interviews were transcribed in their entirety, coded, and analyzed based on recurring themes. Eighteen transcripts were used for the analysis. Results were classified into five main themes. Participants (n = 8) were most concerned about cancer risk for their children and female family members, and most (n = 11) mentioned that HBOC provides them increased personal awareness, but has a negligible impact on their life overall (n = 9). Men (n = 11) were interested in a male-focused support group to discuss HBOC and gain knowledge and information. Participants (n = 9) took on active and open communication roles with family members and health care providers. The majority of participants (n = 14) discussed the need for knowledge and awareness among the health care community and general population regarding male HBOC risks. This study serves as a pilot study and provides important and novel insights into psychosocial impacts, communication patterns, encounters with health care professionals, and expressed needs of males with HBOC.

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Acknowledgments

This work was possible thanks to Sue Freidman and Facing our Risk of Cancer Empowered (FORCE) and Kami Wolfe-Schneider as a manuscript reviewer and with expert qualitative analysis support by Shelly Hovick, PhD, of The Ohio State University. This work was conducted to fulfill a degree requirement at The Ohio State University.

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Authors and Affiliations

  1. Division of Human Genetics, Department of Internal Medicine and James Comprehensive Cancer Center, The Ohio State University, Columbus, OH, USA

    Alexandra Suttman, Robert Pilarski, Doreen M. Agnese & Leigha Senter

  2. Division of Pediatrics, Department of Hematology, Oncology, and Bone Marrow Transplant, Children’s Hospital Colorado, 13123 E. 16th Ave, B115, Aurora, CO, 80045, USA

    Alexandra Suttman

  3. Division of Surgical Oncology, Department of Surgery, The Ohio State University, Columbus, OH, USA

    Doreen M. Agnese

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  1. Alexandra Suttman
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  2. Robert Pilarski
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  3. Doreen M. Agnese
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  4. Leigha Senter
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Correspondence to Alexandra Suttman.

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Conflict of Interest

Alexandra Suttman, MS; Robert Pilarski, MS, MSW; Doreen M. Agnese, MD; and Leigha Senter, MS declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000(5). Informed consent was obtained from all patients for being included in this study.

Additional informed consent was obtained from all patients for which identifying information is included in this article.

Animal Studies

No animal studies were carried out by the authors for this article.

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Suttman, A., Pilarski, R., Agnese, D.M. et al. “Second-Class Status?” Insight into Communication Patterns and Common Concerns Among Men with Hereditary Breast and Ovarian Cancer Syndrome. J Genet Counsel 27, 885–893 (2018). https://doi.org/10.1007/s10897-018-0214-z

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  • DOI: https://doi.org/10.1007/s10897-018-0214-z

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