The Advocacy Win That Could Change Hereditary Cancer Care Forever

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/ [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 [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 [https://acast.com/privacy] for more information.

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 [https://www.instagram.com/tiffanygrahamcharkosky/] Tiffany Website [https://tiffanygrahamcharkosky.com/book] Purchase Living Proof: How Love Defied Genetic Legacy: Order Here [https://www.amazon.com/Living-Proof-Defied-Genetic-Legacy/dp/1662532202/ref=sr_1_1?crid=2FM93ESAB6QZ4&dib=eyJ2IjoiMSJ9.Eb7VIHChJnKg6a6KrzUAmw.ncryePRhq-aF7oCpjVPLjgSW4Iq8N2960Q_9JHYasgc&dib_tag=se&keywords=tiffany+graham+charkosky&qid=1749033552&sprefix=tiffany+graham+charkosky%2Caps%2C102&sr=8-1] 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 [https://acast.com/privacy] for more information.

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 mutations * Lynch syndrome * hereditary cancer syndromes * preventative mastectomy or reconstruction * survivorship or previvorship * life after cancer diagnosis * emotional recovery after surgery * relationship changes after trauma or illness * medical anxiety and isolation * If 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 [https://acast.com/privacy] for more information.

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 [https://sharsheret.org/] Or follow on Instagram @SharsheretOfficial [https://www.instagram.com/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 [https://acast.com/privacy] for more information.

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 [https://acast.com/privacy] for more information.