Uncertainty and previvors’ cancer risk management: understanding the decision-making process

ABSTRACT

Women who test positive for a BRCA genetic mutation, but who have not been diagnosed, or 'previvors,' experience intense, chronological risk-related uncertainty. Women’s risk management medical decisions can be a way to manage their uncertainty, but little is known about how uncertainty informs their decision or how uncertainty is impacted by these medical decisions. Using an uncertainty management theoretical lens, we interviewed 46 previvors about their decision-making process. A thematic analysis revealed two uncertainty management (i.e., risk-reducing) decision-making pathways (preventive surgery and increased surveillance) with each pathway encompassing a three-part process of 1) uncertainty appraisal, 2) medical decision (i.e., uncertainty management strategy), and 3) outcomes. The findings advance theoretical thinking about uncertainty and risk management as an ongoing, distressful chronic experience, and highlight the importance of life-span phenomena in women’s decision-making process. Based on the findings, we constructed a translational tool to aid genetic counselors and previvors facing these medical decisions.

KEYWORDS:

• Uncertainty
• decision-making
• risk management
• hereditary breast and ovarian cancer
• BRCA

Acknowledgments

A previous version of this manuscript received a top paper award from the Health Communication Division at the annual meeting of the International Communication Association Conference in Washington, D.C. in 2019. The authors would like to thank Facing Our Risk of Cancer Empowered (FORCE) for their recruitment assistance and express immense gratitude to the previvors who shared their decision-making experiences.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes on contributors

Marleah Dean (PhD, Texas A&M University) is an associate professor in the Department of Communication at the University of South Florida and a collaborator member of the Health Outcomes & Behavior Program at the Moffitt Cancer Center in Tampa, FL.

Carla L. Fisher (PhD, Pennsylvania State University) is an associate professor in the Department of Advertising and the College of Journalism and Communications at the University of Florida and a Full Member of the University of Florida Health Cancer Center (UFHCC) Cancer Population Sciences program (CPS) in Gainesville, FL.

Notes

1. For example, undergoing a preventative mastectomy reduces one’s breast cancer risk by 90% or more (Metcalfe et al., 2004).

2. The National Comprehensive Cancer Network (NCCN) recommends removal of ovaries and fallopian tubes between age 35 and 40 and upon completion of family planning.

3. ‘Joining FORCEs Against Hereditary Cancer’ is an international conference hosted by the non-profit organization called FORCE (Facing Our Risk of Cancer Empowered) and is designed for individuals and families affected by hereditary cancer or a genetic mutation associated with an increased risk of hereditary cancer.

Additional information

Funding

This work was supported by the Texas A&M University’s College of Liberal Arts Vision (2020) Dissertation Enhancement Award; University of South Florida’s College of Arts and Sciences’ Pilot Research Internal Grant.