Marleah Dean Kruzel: You Make the Best Decision You Can — A Researcher’s Honest Take on BRCA and Uncertainty

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 — 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 — not out of avoidance, but out of a researcher’s 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’t 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 — a family member’s 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 — these aren’t aberrations. They’re 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

•       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.

•       How Uncertainty Shifts from Opportunity to Danger: Research findings on how previvors initially appraise uncertainty as something to work with — and how distressful triggers over time cause that appraisal to collapse into threat.

•       The Scansiety Cycle and What Actually Helps: Marleah’s 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.

•       The Age-and-Diagnosis Trigger: How approaching the age at which a parent or relative was diagnosed activates a distinct category of anticipatory grief — and why Marleah’s son’s 8th birthday hit harder than she expected.

•       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.

•       Social Media, Information Overload, and the Patient–Provider Gap: What Marleah’s research reveals about how previvors actually use social media for information and support — and why clinicians who ignore that are missing what’s happening between appointments.

•       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.

•       What Previvors Actually Need After Testing Positive: The post-counseling gap: what’s 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

•       Testing positive doesn’t end uncertainty — it opens a new chapter of it. The question isn’t whether uncertainty will be present; it’s whether you have the relational and psychological tools to live alongside it without being consumed by it.

•       Anxiety at surveillance time isn’t irrational. It’s the body responding to what already happened — to a childhood spent in waiting rooms, to a parent’s changed body, to years of carrying something that can’t be put down. Naming that difference matters.

•       The decision to delay surgery when you’re not emotionally ready isn’t a failure of logic. It’s logic and emotion both operating correctly. Marleah knows what the guidelines say and isn’t ready anyway — and that is its own kind of self-knowledge.

•       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.

•       You make the best decision you can with the information you have at that time. That’s not resignation — it’s the only honest thing. And it’s the difference between living inside the uncertainty and being crushed by it.

 

Content Note

This episode includes discussion of a parent’s 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

•       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.

•       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

•       Face the Risk Together Support Groups: sarachampielcsw.com

•       FORCE (Facing Our Risk of Cancer Empowered): facingourrisk.org — national organization for hereditary cancer advocacy and peer support

•       National Society of Genetic Counselors (NSGC): nsgc.org — find a certified genetic counselor for hereditary cancer risk

 

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Sara Champie