{"version":1,"type":"rich","provider_name":"Libsyn","provider_url":"https:\/\/www.libsyn.com","height":90,"width":600,"title":"Marleah Dean Kruzel: You Make the Best Decision You Can \u2014 A Researcher\u2019s Honest Take on BRCA and Uncertainty","description":" Guest: Marleah Dean Kruzel, PhD Theme: Uncertainty as a Lifetime Companion, Not a Problem to Solve Episode Summary Marleah Dean Kruzel was 8 years old when her mother found a lump. What followed were years of surgeries, chemotherapy, radiation, and a childhood lived largely in hospitals \u2014 experiences that eventually became the foundation of a research career dedicated to understanding what previvors actually go through, and what the systems meant to support them consistently fail to provide. She tested positive for BRCA2 in 2013, after letting the test kit sit in the back of her safe for nearly a year \u2014 not out of avoidance, but out of a researcher\u2019s clear-eyed understanding that knowledge changes everything, and she needed to be ready. What emerges across this conversation is a portrait of uncertainty as something that doesn\u2019t peak and resolve, but cycles. Marleah traces the way uncertainty shifts shape over time: first arriving as danger to be reduced, then reassessed as opportunity, then quietly becoming danger again as surveillance continues and triggers accumulate \u2014 a family member\u2019s diagnosis, a milestone birthday, a celebrity death, a child turning the age you were when everything changed. The scansiety, the waiting room loneliness, the family planning decisions made under incomplete information \u2014 these aren\u2019t aberrations. They\u2019re the terrain. And until the support systems around previvors are built to hold a lifetime, not just a test result, the gap will keep swallowing people whole.   We Cover \u2022       Uncertainty as a Lifetime Variable, Not a Crisis Moment: Why framing genetic testing as empowering misses the ongoing psychological labor of managing probabilistic, ambiguous, and constantly evolving information across decades of surveillance and decision-making. \u2022       How Uncertainty Shifts from Opportunity to Danger: Research findings on how previvors initially appraise uncertainty as something to work with \u2014 and how distressful triggers over time cause that appraisal to collapse into threat. \u2022       The Scansiety Cycle and What Actually Helps: Marleah\u2019s personal account of managing anxiety around screening appointments, including the social support rituals, mental preparation, and post-scan self-care practices that took years to develop. \u2022       The Age-and-Diagnosis Trigger: How approaching the age at which a parent or relative was diagnosed activates a distinct category of anticipatory grief \u2014 and why Marleah\u2019s son\u2019s 8th birthday hit harder than she expected. \u2022       Logical vs. Emotional Decision-Making in Previvor Care: Why decisions about prophylactic surgeries and family planning cannot be made from NCCN guidelines alone, and what happens when providers treat evidence-based timelines as emotionally neutral. \u2022       Social Media, Information Overload, and the Patient\u2013Provider Gap: What Marleah\u2019s research reveals about how previvors actually use social media for information and support \u2014 and why clinicians who ignore that are missing what\u2019s happening between appointments. \u2022       The FORCE BOST Framework for Evaluating Online Health Information: A practical tool for critically assessing whether health content is biased, overblown, shared by an amateur, sales-focused, or taken out of context. \u2022       What Previvors Actually Need After Testing Positive: The post-counseling gap: what\u2019s missing structurally, and why the assumption that a positive result comes with a clear roadmap is one of the most persistent failures in hereditary cancer care.   Highlights & Takeaways \u2022       Testing positive doesn\u2019t end uncertainty \u2014 it opens a new chapter of it. The question isn\u2019t whether uncertainty will be present; it\u2019s whether you have the relational and psychological tools to live alongside it without being consumed by it. \u2022       Anxiety at surveillance time isn\u2019t irrational. It\u2019s the body responding to what already happened \u2014 to a childhood spent in waiting rooms, to a parent\u2019s changed body, to years of carrying something that can\u2019t be put down. Naming that difference matters. \u2022       The decision to delay surgery when you\u2019re not emotionally ready isn\u2019t a failure of logic. It\u2019s logic and emotion both operating correctly. Marleah knows what the guidelines say and isn\u2019t ready anyway \u2014 and that is its own kind of self-knowledge. \u2022       Emotions hit at 2 AM, not during the appointment. Any model of patient support that only exists inside the clinical encounter is missing most of where the psychological weight actually lands. \u2022       You make the best decision you can with the information you have at that time. That\u2019s not resignation \u2014 it\u2019s the only honest thing. And it\u2019s the difference between living inside the uncertainty and being crushed by it.   Content Note This episode includes discussion of a parent\u2019s breast cancer diagnosis experienced in childhood, prolonged family exposure to cancer treatment including surgery, chemotherapy, and radiation, and the ongoing emotional weight of BRCA2 previvor status across more than a decade of surveillance. Marleah also speaks directly about intergenerational guilt and the decision-making complexity around prophylactic surgery and family planning. Listeners navigating their own active risk management or recent results may want to listen in stages.   Resources Mentioned Guest Resources \u2022       Marleah Dean Kruzel, PhD: Associate Professor, University of South Florida; Collaborator Member, Moffitt Cancer Center. Website: marleahdeankruzel.com | LinkedIn: Marleah Dean Kruzel | YouTube: search Marleah Dean Kruzel for research talks and presentations. \u2022       FORCE BOST Framework: A tool for critically evaluating online health information: Biased, Overblown, Shared by an amateur, Sales-focused, Taken out of context. Available through facingourrisk.org. Standard Resources \u2022       Face the Risk Together Support Groups: sarachampielcsw.com \u2022       FORCE (Facing Our Risk of Cancer Empowered): facingourrisk.org \u2014 national organization for hereditary cancer advocacy and peer support \u2022       National Society of Genetic Counselors (NSGC): nsgc.org \u2014 find a certified genetic counselor for hereditary cancer risk   Connect If this conversation resonates, follow, rate, and share the show. Find Sara Champie on IG @SaraChampieLCSW and sarachampielcsw.com for free resources and access to 1:1 and group support. You already speak this language \u2014 come walk the genetic line with us. Sara Champie ","author_name":"Walking the Genetic Line","author_url":"https:\/\/sites.libsyn.com\/584990","html":"