Marleah Dean Kruzel, an associate professor in the Department of Communication, vividly recalls watching her mother undergo breast cancer treatment, beginning with “a tiny lump—barely even noticeable.” Over the years, she witnessed her mother endure surgery, chemotherapy, radiation, and ultimately a prophylactic mastectomy followed by reconstruction.
These early experiences shaped Dean Kruzel’s perspective on cancer, and later, during her PhD program, she discovered she carried a hereditary BRCA2 gene mutation. This revelation prompted her to begin an intensive surveillance program alternating between MRIs and mammograms to detect cancer at the earliest stage.
“I quickly realized I was overwhelmed with uncertainty about my future and what it would bring,” Dean Kruzel said. “This sparked my research program focusing on the communication of genetic risk information, managing uncertainty, and making medical decisions.”
Dean Kruzel’s expertise and personal experience led the CDC to invite her for a virtual presentation during Breast Cancer Awareness Month with the Division of Cancer Prevention and Control (DCPC), part of the National Center for Chronic Disease Prevention and Health Promotion.
In her seminar, Dean Kruzel highlighted the experiences of “previvors”—individuals with a hereditary cancer predisposition who have not been diagnosed with cancer. The term, coined by the nonprofit Facing Our Risk of Cancer Empowered, emphasizes that these individuals face ongoing stress and complex medical decisions that are often overlooked.
With broader access to genetic testing and counseling, more people are discovering their inherited cancer risks. Dean Kruzel explained that while testing is often sought to reduce uncertainty, learning about a genetic predisposition can introduce new uncertainties that must be managed over a lifetime.
“We need more support for previvors after receiving their positive genetic test results outside the clinical encounter,” she stressed.
Storytelling is one key tool for support, Dean Kruzel said. Previvors are often motivated to share their experiences to help others navigate difficult decisions. Organizations such as My Faulty Gene and its Family Gene Share Project—where Dean Kruzel serves on the Scientific Advisory Board—demonstrate how sharing personal experiences can drive meaningful change.
“In the context of inherited cancer risks, chronic uncertainty management is a lifelong process,” she said. Dean Kruzel added that for previvors pursuing long-term surveillance, psychological distress “ebbs and flows, and supportive care is needed across the lifespan.”
