BRCA & Beyond

Marisa Stachelski

BRCA & Beyond is where real talk meets real life with a gene mutation. I’m Marisa, a BRCA2 previvor, colon cancer survivor, wife, and mom of two, and I know firsthand how overwhelming, emotional, and downright confusing this journey can be. But here’s the truth — your gene mutation does not define you. Your choices do. And there is a full, beautiful life waiting beyond this diagnosis. Here, we’ll talk about the decisions no one ever expects to face, the emotions that come with them, and the messy, beautiful, complicated life that happens in between. You’ll hear honest stories (mine and others’), practical tips, and guides that make the path a little clearer. We’ll welcome guests who share their own journeys and expertise, offering fresh perspectives, hope, and encouragement. We’ll laugh when we can, cry when we need to, and remind each other that joy still exists, even in the chaos. Whether you’re newly diagnosed, deep into decision-making, or simply searching for connection, this is a space to feel understood, supported, and never alone. Pull up a seat, friend. We’re in this together. Hosted on Acast. See acast.com/privacy for more information.

  1. 5d ago

    Navigating Genetic Risk as a Family with Marleah Dean Kruzel, Ph.D

    What happens after genetic testing? For many people, receiving a positive genetic test result is just the beginning. The real challenge often comes next: navigating uncertainty, making medical decisions, and having difficult conversations with the people you love. In this episode of BRCA & Beyond, I sit down with Dr. Marleah Dean Kruzel, a BRCA2 previvor, researcher, speaker, and Associate Professor whose work focuses on hereditary cancer, genetic risk communication, patient empowerment, and family communication. As the daughter of a breast cancer survivor and a BRCA2 carrier herself, Dr. Dean Kruzel has dedicated her career to helping patients, families, and healthcare providers navigate the complex realities of hereditary cancer risk. Together, we discuss: ✨ The emotional side of genetic testing ✨ Why many people delay testing—even when they know they're at risk ✨ How hereditary cancer affects entire families, not just the person who tests positive ✨ Family communication and difficult conversations about inherited cancer risk ✨ What cascade testing is and why it can save lives ✨ How to approach relatives who may be hesitant to test ✨ Managing uncertainty as a BRCA previvor ✨ Practical strategies for talking with children and family members about genetic risk ✨ Why these conversations are not "one and done" Whether you carry a BRCA mutation, Lynch syndrome, CHEK2, PALB2, ATM, TP53, PTEN, or another hereditary cancer mutation, this episode offers practical guidance, validation, and hope for navigating genetic risk as a family. About Dr. Marleah Dean KruzelDr. Marleah Dean Kruzel is a health communication researcher, speaker, and BRCA2 previvor whose mission is to empower patients to better engage with clinicians, help clinicians communicate more effectively with patients, and translate research into meaningful tools that improve health outcomes. Her work focuses on hereditary cancer, patient engagement, managing uncertainty, health decision-making, and communication among patients, families, and healthcare providers. She has collaborated with organizations including FORCE and has received funding from the National Cancer Institute, the Centers for Disease Control and Prevention, and the American Cancer Society. Connect with Dr. Marleah Dean Kruzel📍 LinkedIn: Marleah Dean Kruzel on LinkedIn 📍 Website: marleahdeankruzel.com 📍 YouTube: Watch Dr. Dean Kruzel's TEDx Talk, How to Make Decisions in the Wake of Uncertainty, and explore Previvor Perspectives, a series she co-hosts with Sara Kavanaugh of The Positive Gene Podcast. Hosted on Acast. See acast.com/privacy for more information.

    1h 5m
  2. May 28

    The Advocacy Win That Could Change Hereditary Cancer Care Forever

    What if one of the biggest advocacy wins for the hereditary cancer community happened quietly… and most people never even heard about it? In this episode of BRCA & Beyond, Marisa breaks down the groundbreaking ICD-10 recognition recently granted for Lynch syndrome, BRCA1, BRCA2, and Li-Fraumeni syndrome, and why this could become one of the most important systemic changes hereditary cancer patients have seen in years. This conversation goes far beyond medical coding. It explores how hereditary cancer patients and previvors have spent years navigating healthcare systems that often had no clear category for them, impacting insurance coverage, preventative care, surveillance approvals, physician education, research funding, and long-term patient outcomes. Marisa explains: • What ICD-10 codes actually are (in normal language) • Why hereditary cancer patients have felt medically invisible • How BRCA, Lynch syndrome, and Li-Fraumeni patients were previously categorized • Why proper medical recognition changes healthcare infrastructure • Insurance denials and preventative screening barriers • The emotional reality of being “high risk but not sick” • Why advocacy is more than awareness posts • How this advocacy win could shape the future of hereditary cancer care If you are navigating BRCA1, BRCA2, Lynch syndrome, hereditary cancer risk, preventative surgeries, cancer survivorship, previvorship, MRIs, colonoscopies, genetic testing, or insurance challenges, this episode is for you. This is one of the biggest behind-the-scenes hereditary cancer advocacy wins in recent years, and it has the potential to change how hereditary cancer patients are recognized across healthcare systems moving forward. SHOW NOTES: The new ICD-10 codes discussed in this episode are expected to take effect in September 2026. Fight CRC Announcement: https://fightcolorectalcancer.org/fight-crc-secures-icd-10-code-for-lynch-syndrome-brca-1-brca-2-li-fraumeni/ Collaborative Group of the Americas on Inherited Gastrointestinal Cancer (CGA-IGC): https://www.cgaigc.com/post/fight-crc-and-cga-igc-members-help-advance-icd-10-recognition-for-lynch-syndrome Follow BRCA & Beyond for more conversations on hereditary cancer, BRCA mutations, Lynch syndrome, survivorship, previvorship, advocacy, genetic testing, and navigating life after life-changing diagnoses. Hosted on Acast. See acast.com/privacy for more information.

    47 min
  3. May 21

    Living Proof: Tiffany Graham Charkosky on Lynch Syndrome, Loss, & Genetic Legacy

    In this episode of BRCA & Beyond, Marisa sits down with author and Lynch Syndrome advocate Tiffany Graham Charkosky for an emotional and deeply honest conversation about genetic legacy, motherhood, grief, and learning how to live fully in the face of hereditary cancer risk. Tiffany shares her journey of losing her mother at just 11 years old before her family ever knew Lynch Syndrome was part of their story. Years later, after the loss of her uncle Jeff and the discovery of Lynch Syndrome within her family, Tiffany would learn she carried the same genetic mutation herself, all while pregnant with her second son. Together, Marisa and Tiffany discuss the emotional realities of living with Lynch Syndrome, navigating preventative surgeries, the grief and complexity surrounding family planning decisions, motherhood after diagnosis, and Tiffany’s experience participating in an immunotherapy trial aimed at suppressing tumors. They also dive into Tiffany’s powerful debut memoir, which explores love, loss, resilience, and what it means to move forward despite a difficult genetic legacy. Tiffany Graham Charkosky writes about motherhood, medicine, and health, with work featured in Oprah Daily, Literary Hub, Electric Literature, MUTHA Magazine, and more. She currently serves as Director of Arts & Culture at Cleveland Public Library and lives in Northeast Ohio with her husband, two sons, and dog. This episode is for anyone navigating Lynch Syndrome, hereditary cancer risk, genetic testing, preventative surgeries, grief, survivorship, or the emotional realities that come with living in the space between fear and hope. Connect with Tiffany: Tiffany Instagram Tiffany Website Purchase Living Proof: How Love Defied Genetic Legacy: Order Here Topics Discussed: • Lynch Syndrome • Genetic testing & hereditary cancer risk • Losing a parent to cancer • Preventative hysterectomy • Pregnancy during diagnosis • Motherhood after genetic testing • Immunotherapy trials • Living with uncertainty • Memoir writing & advocacy • Family cancer history • Emotional impact of hereditary cancer syndromes Hosted on Acast. See acast.com/privacy for more information.

    1 hr
  4. May 14

    The Loneliness After Diagnosis: How Relationships Change

    What happens after the diagnosis… when life around you starts moving again, but internally everything feels permanently changed? In this deeply honest episode of BRCA & Beyond, Marisa Stachelski opens up about the emotional loneliness that can follow a BRCA diagnosis, hereditary cancer risk, genetic mutations, cancer, preventative surgeries, and medical trauma. This conversation goes beyond the physical recovery and into the emotional reality so many people quietly carry after diagnosis. Marisa shares personal experiences navigating changing relationships, emotional isolation, tissue expander recovery, motherhood after surgery, survivorship, and the pressure to appear “strong” while mentally struggling underneath it all. From friendships becoming distant to feeling disconnected in everyday life, this episode explores how hereditary cancer and life-altering diagnoses can impact identity, relationships, mental health, and the way you experience the world around you. This episode is for anyone navigating: BRCA1 or BRCA2 mutationsLynch syndromehereditary cancer syndromespreventative mastectomy or reconstructionsurvivorship or previvorshiplife after cancer diagnosisemotional recovery after surgeryrelationship changes after trauma or illnessmedical anxiety and isolationIf you’ve ever felt lonely after diagnosis, struggled with feeling misunderstood, or wondered why relationships can feel different after cancer or genetic testing, this episode will likely resonate deeply. 🎙️ BRCA & Beyond is a podcast about hereditary cancer, survivorship, previvorship, emotional healing, advocacy, and navigating life after diagnosis with honesty, vulnerability, and real conversation. Hosted on Acast. See acast.com/privacy for more information.

    54 min
  5. May 6

    Sharsheret CEO Elana Silber on BRCA, Genetic Risk, & Family Support

    What happens after the diagnosis… after the genetic test… after the doctor’s appointment ends? In this powerful episode of BRCA & Beyond, Marisa sits down with Elana Silber, CEO of Sharsheret, to discuss how the organization is transforming support for individuals and families navigating BRCA mutations, hereditary cancer risk, breast cancer, ovarian cancer, preventative surgeries, IVF with PGT-M, and survivorship. Elana Silber has spent more than two decades leading Sharsheret’s life-saving support and education programs for women, men, and families facing cancer. Under her leadership, Sharsheret has grown from a small grassroots initiative into an internationally respected organization serving thousands each year across the United States, Israel, and beyond. Together, Marisa and Elana explore the emotional realities that often go unspoken after a BRCA diagnosis — including fear, family planning, difficult medical decisions, motherhood, mental health, and the gap between clinical care and real-life support. In this episode, they discuss: • BRCA1 and BRCA2 genetic mutations • Hereditary breast and ovarian cancer • Genetic testing and understanding family history • Preventative mastectomy and prophylactic surgery • IVF with PGT-M and family planning options • Peer support, grief, and mental health resources • Mastectomy recovery kits and Sharsheret’s Busy Boxes for children • How hereditary cancer impacts the entire family • Why emotional support matters just as much as medical care Elana also shares how Sharsheret provides free and confidential culturally relevant support, financial assistance, educational resources, genetic counseling, social work services, peer mentorship, survivorship support, and customized care kits for individuals and families navigating hereditary cancer and cancer treatment. This conversation is filled with honesty, education, compassion, and hope for anyone navigating hereditary cancer risk, considering genetic testing, supporting a loved one, or searching for trusted resources after a BRCA diagnosis. Learn more about Sharsheret at Sharsheret.org Or follow on Instagram @SharsheretOfficial 🎙️ BRCA & Beyond is a podcast dedicated to hereditary cancer awareness, genetic mutations, previvorship, survivorship, advocacy, and the emotional realities of life before, during, and beyond genetic risk. Hosted on Acast. See acast.com/privacy for more information.

    56 min
  6. Apr 30

    Genetic Mutation, New Doctors & Starting Over

    What happens when you move over 1,000 miles away… and suddenly realize rebuilding your medical team means more than finding new doctors—it means confronting the reality that many parts of the healthcare system still lack basic education around what it means to care for a previvor. In this episode of BRCA & Beyond, Marisa shares the emotional and practical realities of starting over medically after relocating—leaving behind trusted specialists, navigating new insurance, rebuilding care from scratch, and coming face-to-face with a difficult truth: many primary care providers are not adequately equipped with even foundational knowledge about hereditary cancer syndromes, BRCA, or the long-term needs of previvors. This conversation dives into the grief of losing a carefully built medical team, the exhaustion of retelling your story, and the larger systemic gaps that often leave patients with genetic mutations doing far too much of the educating themselves. Inside this episode: • The emotional toll of leaving behind specialists who knew your history • Why moving with BRCA or hereditary cancer risk can feel medically overwhelming • The healthcare system gaps previvors often face • Why many primary care doctors lack basic education on hereditary cancer syndromes • The burden of self-advocacy when providers don’t fully understand your risk • How genetic counselors can help bridge critical gaps in care • Building a strategic medical roadmap after relocation This episode is not about blaming individual doctors—it’s about exposing a bigger issue: patients with BRCA, hereditary cancer syndromes, and complex medical histories deserve broader awareness, better physician education, and more informed care pathways. Because previvors should not have to be the ones teaching the healthcare system how to protect them. If you’ve ever felt like your medical complexity was bigger than the system designed to support it… this conversation is for you. Hosted on Acast. See acast.com/privacy for more information.

    37 min
  7. Apr 23

    From Diagnosis to Advocacy | Kathy Baker on BRCA, Genetic Testing & the Story Behind My Faulty Gene

    What if one conversation, one decision, could change the way you think about your health forever? In this episode of BRCA and Beyond, I’m joined by Kathy Baker, founder and executive director of My Faulty Gene, a nonprofit focused on helping people access genetic testing and better understand their hereditary cancer risk. Kathy shares her personal journey through breast and ovarian cancer, the role BRCA testing played in her life, and how her experience led her to create an organization that is now helping others make more informed, empowered decisions. Her story is honest, thoughtful, and a reminder of how much clarity can come from simply having the right information. We talk about what genetic testing actually looks like, who should consider it, and how understanding your risk can open the door to proactive, personalized care. In this episode, we cover: • BRCA1 and BRCA2 genetic mutations and hereditary cancer risk • When and why to consider genetic testing • Navigating decisions around screening and preventative care • The impact of hereditary cancer on families • How My Faulty Gene is helping expand access to testing and education Kathy is also a cancer survivor and national advocate who serves on multiple advisory boards, using her voice to help others better understand their options and feel supported in the process. If you’ve ever wondered whether genetic testing is something you should explore, this conversation will give you a grounded place to start. Connect with My Faulty Gene Instagram @my_faulty_gene www.myfaultygene.org This podcast is for informational purposes only and does not replace medical advice. Always consult your healthcare provider for personal decisions. Hosted on Acast. See acast.com/privacy for more information.

    1h 3m
  8. Apr 10

    When BRCA Runs in Your Family:

    What happens when cancer risk isn’t just a possibility… but a pattern in your family? In this episode of BRCA & Beyond, I’m joined by Vanessa Federico, also known as the BRCA Babe, who shares what it’s really like to grow up knowing hereditary cancer is part of your story. Vanessa is a BRCA1 carrier and one of three sisters, where she and one sister carry the gene and the other doesn’t. That alone brings a layer of complexity that so many families quietly navigate but rarely talk about out loud. We talk about what it feels like to sit at that crossroads, knowing your family history, understanding your risk, and having to make decisions that don’t come with clear answers. From starting surveillance in her twenties, to choosing a risk-reducing mastectomy at 30, to becoming a mom after her surgery, Vanessa shares her experience in a way that feels honest, grounded, and real. Vanessa Federico stepped into previvorhood with resilience and purpose after testing positive for the BRCA1 gene mutation. As a mother and runner, she uses her voice to shed light on hereditary cancer risk and the emotional realities that come with it, while also embracing the messy, beautiful balance of family life. Through her platform, Vanessa shares her journey with honesty, vulnerability, and a dose of humor, helping to normalize the previvor experience and make difficult conversations feel a little less heavy. Her mission is to create a space where women feel supported, informed, and empowered every step of the way. You can follow her journey on Instagram at @brcababeboston. This conversation isn’t about having all the answers. It’s about what it looks like to live through the questions. If you’ve ever felt the weight of family history, struggled with what decision is right, or wondered what life actually looks like on the other side of these choices, this one will stay with you. Hosted on Acast. See acast.com/privacy for more information.

    1h 29m
5
out of 5
5 Ratings

About

BRCA & Beyond is where real talk meets real life with a gene mutation. I’m Marisa, a BRCA2 previvor, colon cancer survivor, wife, and mom of two, and I know firsthand how overwhelming, emotional, and downright confusing this journey can be. But here’s the truth — your gene mutation does not define you. Your choices do. And there is a full, beautiful life waiting beyond this diagnosis. Here, we’ll talk about the decisions no one ever expects to face, the emotions that come with them, and the messy, beautiful, complicated life that happens in between. You’ll hear honest stories (mine and others’), practical tips, and guides that make the path a little clearer. We’ll welcome guests who share their own journeys and expertise, offering fresh perspectives, hope, and encouragement. We’ll laugh when we can, cry when we need to, and remind each other that joy still exists, even in the chaos. Whether you’re newly diagnosed, deep into decision-making, or simply searching for connection, this is a space to feel understood, supported, and never alone. Pull up a seat, friend. We’re in this together. Hosted on Acast. See acast.com/privacy for more information.

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