Walking the Genetic Line

Sara Champie

Conversations about navigating hereditary cancer risk. Join us to talk about life between the scans, and how finding out you have a genetic mutation can be a portal to emotional, relational and intergenerational healing.

  1. Krista Brown: ATM Mutation, Delayed Diagnosis, and What Self-Advocacy Actually Costs

    1D AGO

    Krista Brown: ATM Mutation, Delayed Diagnosis, and What Self-Advocacy Actually Costs

    Guest: Krista (Oncology Nurse Navigator) Theme: Self-Advocacy, ATM Mutation, Cancer After Previvorhood   EPISODE SUMMARY When Krista's mother was 48, she became the first known cancer diagnosis in their family. She tested negative for BRCA mutations and felt relief — relief that she wouldn't pass anything on to her children. Twelve years later, just before entering hospice, she was offered expanded genetic testing and found out she carried a pathogenic ATM variant. She shared those results with her children. A few months after her death, Krista — 38 years old, a nurse, carrying twelve years of hospital vigils and treatment complications in her body — went in and requested her own testing. What unfolds from that appointment is a story about what it actually takes to move through a healthcare system that doesn't know your mutation, that tells you the abnormality on your MRI is a lymph node, that sends you home with "come back in six months." Krista pushed for a biopsy that three specialists told her she didn't need. She was right. Her cancer diagnosis arrived two weeks before her scheduled preventive surgery. She now works as an oncology nurse navigator, walks patients through the same system she had to fight, and has built an educational platform for the hereditary cancer community — shaped entirely by what she wasn't told when she needed it most. WE COVER Testing too late, too little: Why Krista — a nurse with two generations of breast cancer in her family — was never offered genetic testing for twelve years, and what that delay meant for her outcomes. The self-advocacy paradox: The tension of knowing something is wrong, having a medical background, identifying as a people-pleaser, and still having to push three specialists who said she was overreacting. ATM mutation specifics: What carriers of ATM pathogenic variants actually face — including a 69% breast cancer risk, pancreatic and ovarian risk, and why the focus on BRCA leaves ATM carriers navigating without a map. The middle phase nobody prepares you for: The psychological and bodily experience of bilateral mastectomy with flap reconstruction between the first and second surgery — including what it does to a woman's relationship with her own reflection. Explaining hereditary cancer to children: How Krista told her daughters (ages 5, 8, and 10 at diagnosis) about her mutation, her surgery, and later her cancer — including what she had to process in herself first before she could speak from a calm place. The grief that doesn't announce itself: How choosing surgery — a choice she felt grateful for — still produced grief she felt she wasn't allowed to have, and why "I chose this" doesn't close off mourning. Cancer as identity reorganizer: How the experience shifted what Krista allows into her life, where she places her attention, and what felt insufficient about who she'd been before this began. What the oncology system still misses: How even inside treatment, secondary risks (pancreatic, ovarian) get dropped after the primary intervention, and why mutation carriers need to track their full risk profile across specialties. HIGHLIGHTS & TAKEAWAYS Three specialists told her the abnormality wasn't cancer. She pushed anyway. That instinct — the unsettled feeling she couldn't explain — was the most accurate clinical information she had. Learning to trust it required overriding the authority gradient we're all trained to defer to. The grief of choosing surgery is still grief. Knowing you're lucky, knowing you have options, knowing what you avoided — none of that neutralizes what it costs to look in the mirror at a body mid-reconstruction and not recognize yourself. Gratitude and loss occupy the same moment. What she modeled for her daughters wasn't resilience. It was legibility — making the emotional experience visible and speakable so it could move through them instead of getting stored somewhere unnamed. The shift from previvor to cancer diagnosis didn't happen at diagnosis. It had been accumulating across twelve years of watching her mother, then across the months of self-advocacy, then across a two-week window between a positive biopsy and surgery already on the calendar. The "before and after" is rarely a single moment. She found her way into the hereditary cancer community not as someone who sought support, but as someone who had always been "fine." The connection she found there changed more than her career — it changed what she understood about what she'd actually needed all along. CONTENT NOTE This episode includes detailed discussion of a parent's cancer diagnosis and death, including end-of-life care and hospice. Krista also shares her own cancer diagnosis and surgical experience, including the psychological impact of bilateral mastectomy with reconstruction. The conversation includes reference to the loss of a sister-in-law to cancer at age 38. RESOURCES MENTIONED Guest resources: Krista on Instagram: @cancer.prevention.coach — hereditary cancer education and advocacy content for the ATM and broader high-risk community Standard links: 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 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 — come walk the genetic line with us. Sara Champie

    45 min
  2. Ali Hall: Prophylactic Mastectomy, Queer Identity, and Claiming Your Body on Your Own Terms

    APR 2

    Ali Hall: Prophylactic Mastectomy, Queer Identity, and Claiming Your Body on Your Own Terms

    _*]:min-w-0 gap-3"> Guest: Ali Hall Theme: Queer Identity, Bodily Autonomy, and the BRCA Diagnosis Nobody Saw Coming _*]:min-w-0 gap-3"> _*]:min-w-0 gap-3"> Episode Summary _*]:min-w-0 gap-3"> When Ali Hall stole a 23andMe kit from a family white elephant exchange, she wasn't looking for anything life-changing. Five years later, an email arrived while she was picking her kid up from school: her results had been updated. She had a BRCA mutation. What followed wasn't panic — and that itself is the story. Ali's response was shaped by something older than the diagnosis: a lifelong pattern of minimizing her own experience when people around her were suffering more visibly. _*]:min-w-0 gap-3"> What makes this conversation rare is the intersection Ali navigates without apology. As a queer, gender-expansive person living in Florida, going flat wasn't just a medical decision — it was a question of safety, identity, and what it finally meant to feel at home in her own body. Three weeks post-surgery, something unexpected happened: she stopped caring what other people thought. This episode sits at the crossroads of intergenerational emotional inheritance, bodily autonomy, and what it looks like when a medical intervention accidentally hands you the self-acceptance you were never quite given permission to claim. _*]:min-w-0 gap-3"> _*]:min-w-0 gap-3"> We Cover _*]:min-w-0 gap-3"> The accidental diagnosis: How Ali discovered her BRCA mutation through a forgotten 23andMe test — and what it means to receive life-altering information you never sought out Minimizing your own risk as a survival pattern: Why Ali's first response was "this isn't a big deal" — and how being surrounded by people with active cancer taught her, long before any lab result, that her experience counted less Navigating prophylactic mastectomy in a queer body: The real safety calculations, identity considerations, and bodily autonomy questions that mainstream BRCA spaces don't make room for The noise problem: How well-meaning but homogenized Facebook groups pushed Ali back toward her own body knowledge — and why returning to herself was the most important decision she made Information, timing, and emotional maturity: Why Ali believes she made the right decision at exactly the right moment — and what she thinks happens when young people receive this diagnosis before they have the scaffolding to hold it Going flat and gaining ground: What happened to Ali's confidence three weeks after surgery — and why it surprised her The gap in hereditary cancer care: Why even world-class medical systems leave patients without trauma-informed emotional support after a BRCA diagnosis _*]:min-w-0 gap-3"> _*]:min-w-0 gap-3"> Highlights & Takeaways _*]:min-w-0 gap-3"> Minimizing your own risk is a survival pattern, not a personality trait. When people around you have "real" cancer, your genetic warning can feel like it doesn't count — and that belief has roots long before the diagnosis arrives. The body knows before the mind catches up. Ali knew she would go flat before she could fully articulate why. Fighting that knowledge — researching implants she never wanted — was the cost of not yet trusting herself. Prophylactic surgery carries different stakes in a queer body. The decision wasn't just medical. It was a calculation about safety, visibility, and what kind of presence Ali could have in the world after surgery. More information isn't always better. Ali raises a question this field rarely asks: what would have happened if she'd gotten this diagnosis at 25, before she had the emotional scaffolding to hold it? Sometimes the medical intervention is the least disruptive part. The harder work was learning to stop abandoning herself in service of everyone else's comfort — a pattern the diagnosis finally cracked open. _*]:min-w-0 gap-3"> _*]:min-w-0 gap-3"> Content Note _*]:min-w-0 gap-3"> This episode discusses BRCA mutation, prophylactic mastectomy, queer identity and gender expression, bodily safety, parenting with genetic risk, and the emotional experience of unsought medical information. _*]:min-w-0 gap-3"> _*]:min-w-0 gap-3"> Resources Mentioned _*]:min-w-0 gap-3"> FORCE (Facing Our Risk of Cancer Empowered): facingourrisk.org — national organization for hereditary cancer advocacy and peer support Fierce Flat Community: peer support for those who choose to go flat after mastectomy National Society of Genetic Counselors (NSGC): nsgc.org — find a certified genetic counselor for hereditary cancer risk Face the Risk Together: Sara Champie's support groups for people in California: sarachampielcsw.com _*]:min-w-0 gap-3"> _*]:min-w-0 gap-3"> Connect _*]:min-w-0 gap-3"> If this conversation resonates, follow, rate, and share the show. Find Sara Champie on IG @FaceTheRiskTogether and sarachampielcsw.com for free resources and access to 1:1 and group support. _*]:min-w-0 gap-3"> You already speak this language — come walk the genetic line with us. _*]:min-w-0 gap-3">   _*]:min-w-0 gap-3">

    54 min
  3. Jennifer Mercer: Lynch Syndrome Awareness and the Weight of a Father's Legacy

    MAR 24

    Jennifer Mercer: Lynch Syndrome Awareness and the Weight of a Father's Legacy

    Episode Summary Jennifer never knew her biological father growing up — and when she finally let him back into her life at 25, what he brought with him was a medical history that would change everything. Phone call after phone call, a new cancer. Eight-plus organ cancers. Over a hundred skin cancers. Years before anyone thought to offer him a genetic test. When Lynch Syndrome MSH2 was finally identified, Jennifer wasn't ready — she was a single mother, financially stretched, emotionally guarded, and carrying decades of unresolved grief toward a man who had never shown up for her. She put it on the shelf. And then he died. And she couldn't anymore. In this episode, Jennifer and Sara explore what it means to inherit a diagnosis from the parent who was already a wound — how the moment of receiving a positive result is a nervous system event as much as a medical one, and how rage, guilt, fear for your children, and grief for a father you never fully had can arrive all at once in a single Zoom call. Jennifer also shares how she transformed that convergence into Lynch Syndrome Awareness, an organization fighting to close the staggering gap between how common this mutation is — 1 in 279 — and how rarely doctors recognize it. We Cover Growing up without her biological father and reconnecting at 25 — only to find a devastating medical history on the other side Watching her father face eight-plus organ cancers over years, and the slow accumulation of fear that came with every phone call The financial and emotional barriers that delayed her own testing — and why that delay deserves compassion, not judgment Receiving her Lynch Syndrome MSH2 positive results by Zoom, alone, days before a family vacation — and what Time Collapse looks like in real time The layered grief of inheriting a mutation from an absent parent: anger, guilt, and terror for her adult children arriving simultaneously The Boland inversion — a rare MSH2 variant that has been missed by standard testing — and why naming it to your genetic counselor matters Why Lynch Syndrome, the most common hereditary cancer mutation, remains almost entirely unknown to the general practitioners most likely to encounter it The red flags that physicians can act on — cancer under 50, multiple primary cancers, family pattern — and the simple chart Jennifer's organization provides to help patients walk in prepared Building Lynch Syndrome Awareness from personal crisis: what it looks like to turn inherited doom into community mission Highlights & Takeaways "How dare you. Not a hug, not a birthday card — but this. You give this to me." Sometimes the mutation arrives from the parent who was already a loss. The grief is never only about cancer. Avoidance after a family member's diagnosis is not denial — it is often the nervous system doing exactly what it needs to do when the load exceeds what the present moment can hold. The moment of receiving a positive result is not just emotional. It is neurological. Jennifer's account of going numb, losing comprehension, and needing to end the call before she broke down is a clinical picture of what happens when past, present, and future collapse into one. Lynch Syndrome affects 1 in 279 people — more than BRCA — and most doctors have never heard of it. Prevalence without visibility is its own kind of harm. Self-advocacy is not a personality trait. It is a survival skill that patients can be taught, supported in, and given tools to practice. Content Note This episode includes discussion of paternal absence and estrangement, parental death, prolonged exposure to a family member's cancer illness, genetic testing and positive results, fear around children inheriting a mutation, financial barriers to genetic testing, and the emotional processing of hereditary cancer risk. Resources Mentioned Lynch Syndrome Awareness — lynchsyndromeawareness.com  FORCE: Facing Our Risk of Cancer Empowered — facingourrisk.org — peer navigator program, message boards, and expert-reviewed resources for hereditary cancer Genetic counseling services through comprehensive cancer centers Trauma-informed therapy for individuals navigating hereditary cancer risk and intergenerational loss Connect If this episode resonated, please follow, rate, and share Walking the Genetic Line. Find Sara Champie on Instagram and TikTok @SaraChampieLCSW for trauma-informed resources, therapy offerings, and group support. You are not alone in this. Let's walk this line, together.

    51 min
  4. Solo Episode: Living with Hereditary Cancer and Risk in a Loud World

    MAR 5

    Solo Episode: Living with Hereditary Cancer and Risk in a Loud World

    Host: Sara Champie, LCSW Theme: Navigating medical vulnerability, global instability, and nervous system overwhelm during hereditary cancer risk and treatment. Episode summary What happens when your body is healing, your life is medically uncertain, and the world around you feels like it's unraveling? In this solo episode, therapist Sara Champie explores a reality many people navigating hereditary cancer risk quietly experience: the nervous system strain of managing personal medical vulnerability while absorbing the constant noise of global crisis. When surgery, treatment, or high-stakes medical decisions coincide with political instability, violence in the news, and collective trauma, the body doesn't separate those experiences — it metabolizes them all at once. Sara offers a trauma-informed perspective on why everything can feel so intense during these seasons, and why that intensity is not a sign of weakness but evidence of a nervous system doing exactly what it was designed to do. This episode is an invitation to reclaim boundaries, reduce overwhelm, and protect the small sphere of influence that supports healing. We cover • The nervous system impact of healing from surgery or treatment during times of global instability • Why the body does not separate personal and collective threats • The layered stress of medical decisions, family dynamics, and cultural chaos • How trauma histories can amplify reactions during medical vulnerability • Why overwhelm, exhaustion, or emotional volatility during healing is physiologically normal • The concept of titrating exposure to news, social media, and external stress • Protecting your energy and nervous system while your body repairs itself Highlights & takeaways "Your nervous system is metabolizing everything it's exposed to." "When your body is physically vulnerable, everything in the world lands harder." "Intensity does not mean you're falling apart. Your system is doing its job." "Our bodies did not evolve for 24-hour global awareness layered on top of personal medical vulnerability." "Caring about the world does not require flooding yourself." "Sometimes the most responsible thing we can do is protect the small sphere we actually have influence over." Content note This episode references medical trauma, surgery recovery, violence in the news, political instability, sexual abuse systems, trauma history, and the emotional strain of living with hereditary cancer risk. Resources mentioned Walking the Genetic Line Podcast Conversations exploring the emotional, relational, and psychological realities of hereditary cancer risk. Sara Champie, LCSW Trauma-informed psychotherapist specializing in hereditary cancer risk, medical decision-making, and intergenerational healing. Website: https://sarachampielcsw.com Instagram: @sarachampielcsw Connect If this episode resonated, please consider following the show, leaving a review, or sharing it with someone navigating hereditary cancer risk or medical uncertainty. You can connect with Sara Champie and learn more about her work at @sarachampielcsw. Let's walk this line, together. Additional support If you are navigating genetic risk, cancer treatment, or complex medical decisions, trauma-informed therapy and support communities can help process the emotional layers that often accompany these experiences. Support may include: • Individual therapy • Support groups for individuals navigating genetic risk or cancer • Patient advocacy organizations and peer support networks You deserve care that addresses both the medical and emotional realities of this journey.

    9 min
  5. Katie McMurray: The Emotional Impact of Grief, Sisterhood, and Preventative Surgery

    FEB 26

    Katie McMurray: The Emotional Impact of Grief, Sisterhood, and Preventative Surgery

    Guest: Katie McMurray Theme: BRCA1, sisterhood, developmental trauma, and choosing preventative surgery in young adulthood Episode summary When Katie was 17, she lost her mother to breast cancer. Years later, genetic testing confirmed what she had long suspected: she carries a BRCA1 mutation. In this episode, Katie and Sara Champie explore what happens when grief resurfaces through genetic testing — how identity shifts, how fear and agency intertwine, and how the loss of a parent shapes medical decision-making. At 25, during the height of COVID, Katie chose preventative mastectomy surgery. As the oldest of three sisters who all inherited the mutation, she navigated her own fear while becoming a model of courage and clarity for her family. This conversation holds the tender, complex emotional terrain that genetic testing opens — far beyond the lab result. We cover Losing her mother to breast cancer as a teenager Receiving BRCA1 results in person with a genetic counselor — and why that mattered The emotional shock of genetic testing and how it reactivates grief The identity shift between "pre-testing" and "post-testing" self Why surgery felt like a non-negotiable choice The psychological cost of ongoing surveillance vs. preventative surgery Being the oldest sister after parental loss All three sisters inheriting the mutation The role of sisterhood and care during recovery COVID, surgery at 25, and finding readiness The limitations of cancer-focused support groups for previvors Why trauma-informed and therapy referrals should accompany genetic testing Highlights & takeaways "There's a pre-genetic testing you and a post-genetic testing you. You can't go back." Genetic testing is never "just a lab test" — it reverberates through identity, family, and history. Losing a parent to cancer transforms how the body receives risk information. Preventative surgery can be an act of agency — not fear. Support matters: an in-person genetic counselor changed the trajectory of Katie's experience. Sisterhood became both a source of care and a mirror of generational courage. Content note This episode includes discussion of parental death, adolescent grief, preventative mastectomy, genetic cancer risk, identity disruption, abusive relationships, and emotional processing around hereditary cancer. Resources mentioned The Breasties – community support for young women impacted by breast and ovarian cancer Genetic counseling services through comprehensive breast centers Trauma-informed therapy for individuals navigating hereditary cancer risk Connect If this episode resonated, please follow, rate, and share Walking the Genetic Line. Find Sara Champie on Instagram and TikTok @SaraChampieLCSW for trauma-informed resources, therapy offerings, and group support. You are not alone in this. Let's walk this line, together.

    1h 4m
  6. Ingrid Nishimoto, LCSW: Peutz-Jeghers Syndrome and Intergenerational Emotional Inheritance

    FEB 12

    Ingrid Nishimoto, LCSW: Peutz-Jeghers Syndrome and Intergenerational Emotional Inheritance

    Guest: Ingrid Nishimoto, LCSW Theme: Inherited Narratives—Moving Beyond the Parent's Story to Claim Your Own Episode Summary When Ingrid Nishimoto was diagnosed with Peutz-Jeghers Syndrome at age 17, she wasn't just handed a medical management plan; she was handed a mirror of her father's life and early death. In this profound conversation with Sara Champie, LCSW, Ingrid explores the "Time Collapse" that occurs when a genetic diagnosis makes the past and future converge in the present. As a fellow psychotherapist, Ingrid deconstructs the emotional burden of living past the age a parent died, the adaptive nature of hyper-vigilance, and the radical act of choosing her own path in a medical system that often prioritizes physical data over the human soul. We Cover The Origin Story: Discovering Peutz-Jeghers Syndrome at 17 after years of "nameless" abdominal pain and the visible markers of pigmentation—and the immediate shift from high-school senior to a high-risk patient. Intergenerational Inheritance: Navigating the grief and anger of "replacing" a parent's narrative, specifically the complexity of living past the age of 37—the year Ingrid's father passed away from the same condition. The "Responsibility Reflex" in Healthcare: How high-achievers often try to "figure it all out" or over-function as a survival strategy when faced with medical uncertainty. Medical vs. Emotional Care: The gap in the Western medical system where physical scans are prioritized, but the mental health impact of "waiting for results" is often left unaddressed. Relationship to Risk: A deep dive into "Risk-Neutral Spaces"—learning that there is no right or wrong way to feel about screening, and how Ingrid moved from rigid self-protection to a more expansive relationship with her body. The Burden of Choice: Deciding between the stability of an employer-based health system and the agency of private practice while carrying a "pre-existing" genetic reality. Highlights & Takeaways "My Story is Unique": A genetic mutation may be inherited, but the narrative you build around it is yours to claim. You are not doomed to repeat the past. The Body as Information: Physical symptoms, like hyper-vigilance or "racing heart" during scans, are not flaws; they are the nervous system's attempt to keep you safe. Permission for Ambivalence: It is possible to be grateful for medical technology while simultaneously feeling anger or protest toward the burden it places on your life. Slowing Down the Reaction: Meaningful decision-making requires emotional safety and the permission to "not know" the future while staying grounded in the present. Content Note This episode discusses hereditary cancer syndromes, the loss of a parent, medical trauma, surgical anxiety, and the emotional complexities of long-term monitoring. Resources Mentioned Ingrid Nishimoto, LCSW: Connect with Ingrid and her private practice work at ingridnishimototherapy.com. The Responsibility Reflex Quiz: Take the quiz to discover your survival strategies under medical stress at sarachampielcsw.com. Face the Risk Together: Sara Champie's 10-week psychotherapy group for women and gender-diverse people in California. Peutz-Jeghers Syndrome (PJS) Information: NORD (National Organization for Rare Disorders) . Connect If this conversation resonates, please follow, rate, and share. Help us reach the high-achieving "over-functioners" who need to know they don't have to carry the risk alone. Instagram: @FaceTheRiskTogether Web: www.sarachampielcsw.com

    51 min
  7. Sara Kavanaugh: From Health Anxiety to Empowerment—Transforming Hereditary Cancer Risk into Healing

    JAN 15

    Sara Kavanaugh: From Health Anxiety to Empowerment—Transforming Hereditary Cancer Risk into Healing

    Guest: Sara Kavanaugh Theme: Living as a Previvor—Agency, Advocacy, and Reframing Anxiety After Genetic Testing Episode summary When Sara Kavanaugh learned she carried mutations in her MSH6 (Lynch syndrome) and Check2 genes, she moved from decades of health anxiety—and ambiguous uncertainty—to a new sense of empowerment and structure. In this dialogue with psychotherapist and fellow traveler Sara Champie, Sara shares how learning her genetic status fundamentally changed her identity, led her to fierce self-advocacy, and inspired her to create the Positive Gene Podcast—a resource and anchor for others navigating hereditary cancer risk. We cover The personal journey: From ingrained health anxiety to seeing genetic knowledge as a "gift" that brings clarity, agency, and actionable plans. What it means to be a "previvor": Lived reality, screening protocols, and the invisible challenges of those at elevated risk—but without a cancer diagnosis. Parenting at midlife: Navigating genetic risk with two young children and the hopes/fears for future generations. Building self-advocacy in the medical system: How to develop real relationships with providers, advocate when facing dismissive care, and bridge gaps in awareness (including doctors who don't know Lynch syndrome!). The role of intuition and anxiety: Reframing lifelong anxiety toward health into self-protection and intuition, rather than pathology. Creating the Positive Gene Podcast: Choosing curiosity, connection, and education as vehicles for healing and collective empowerment. Identity and healing: Drawing on moments from childhood (challenging authority, resisting labels like "flighty") to claim agency and redefine self-worth after a life-changing diagnosis. Highlights & takeaways "Knowledge is power." For many, genetic test results shift fear into structure, agency, and meaningful decision-making. Previvors often live unseen—managing complicated protocols, moving between providers, advocating for themselves, and carrying risk that isn't always visible or understood. The relationship with your healthcare provider matters. Connection and trust can transform screenings and mitigate isolation. Healing is possible even in uncertainty: You can use your experience for growth, connection, and to model integrity and resilience for loved ones. Advocacy starts early—standing up to being underestimated (even as a child) can inform your agency as an adult facing difficult realities. Content note This episode discusses cancer risk, genetic mutations, parenting with uncertainty, health anxiety, identity shifts, and emotional processing after major life events. Resources mentioned Positive Gene Podcast: Listen and connect at positivegenepodcast.com or via Sara Kavanough's LinkedIn or Instagram @positivegenepodcast FORCE (Facing Our Risk of Cancer Empowered): https://www.facingourrisk.org — leading national organization for hereditary cancer advocacy/support groups National Society of Genetic Counselors (NSGC): https://www.nsgc.org/ — find certified genetic counselors for hereditary cancer risk Lynch Syndrome International: https://lynchcancers.org — resources for people with Lynch syndrome Check2 gene mutation information (NIH Genetics Home Reference): https://medlineplus.gov/genetics/gene/chek2/ Face the Risk Together: Host Sara's Champie's support groups for people in Calfornia: www.sarachampielcsw.com  Connect If this conversation resonates, don't forget to follow, rate, and share the show. Find Sara Champie on IG @FaceTheRiskTogether and www.sarachampielcsw.com to get free resources + access to 1:1 and group support. You already speak this language—come walk the genetic line with us.

    55 min
  8. Sara Kourouma: From Childhood Loss to Empowerment, Creating Community for BRCA Carriers

    JAN 15

    Sara Kourouma: From Childhood Loss to Empowerment, Creating Community for BRCA Carriers

    Guest: Sara Kourouma Theme: Loss, agency, and community—the emotional journey of living with BRCA2 Episode summary When Sara Kourouma discovered she carried the BRCA2 mutation as a young adult—after losing her mother to breast cancer at age 10—she was thrust into a landscape defined by uncertainty, risk, and the weight of generational loss. In this episode, Sara Champie sits down with Sara Kourouma, a clinical social worker serving New York and Texas, to explore how privilege, access, grief, and human connection have shaped her journey through surveillance, multiple prophylactic surgeries, and finding a sacred role in supporting others living with hereditary cancer risk. We cover Childhood loss and the evolution of understanding risk: Growing up after her mother's passing, and how major developmental milestones brought a fresh wave of grief and questioning. Early genetic testing and access barriers: Navigating the impact of genetic knowledge on health and life insurance, and the privilege of paying out-of-pocket to keep results private. Decision-making in the shadow of family history: How approaching her mother's age at diagnosis shaped Sara Kourouma's relationship to her own risk and medical choices. Choosing prophylactic surgeries and finding agency: Why Sara Kourouma ultimately chose mastectomy, hysterectomy, and DIEP flap (autologous) reconstruction—and the emotional labor of claiming her needs as a parent and partner. The gaps in psychological care: The critical difference between medical expertise and psychosocial support, and the healing power of group connection and lived experience. Building community, in person and virtually: Why message boards aren't enough, and the importance of human-to-human support for navigating body changes, hormones, and life transitions. Living with ongoing risk and uncertainty: The ever-changing landscape of surveillance, learning to listen to her body, and the meaning of living fully, today. Highlights & takeaways "To be alive is risk. We happen to know our risk, and how can I use that information to empower myself in ways my mom never could?" Privilege and access shape every aspect of care and decision-making—financial, relational, and emotional. There's profound healing in being witnessed by those who truly understand your experience—community is as vital as medical care. Living fully with risk doesn't mean denying uncertainty, but learning to stay present, ask for help, and make meaning together. "My mother's story lives on as a value in my life: live fully, make it meaningful." Content note This episode includes discussion of childhood bereavement, parental death, surgical details, genetic testing, body image, and navigating privilege and access in medical care. Resources mentioned DIEP flap (autologous) breast reconstruction BRCA1 and BRCA2 genetic mutations – information and support from FORCE Surgical menopause and hormone management Dr. Potter, Austin—reconstruction surgeon referenced in the episode Dr. Robson, BRCA research at Memorial Sloan Kettering BRCA mutation carriers: Reddit and Facebook peer-to-peer groups | BRCA Sisterhood Facebook Group Dr. Men, BRCA2 carrier & social educator on Instagram (discussed in this episode) Connect If this conversation resonated, please follow, rate, and share. Find Sara Champie on IG/TikTok @FaceTheRiskTogether and get free tools + therapy/support group offerings via the link in bio. You're not alone—we can walk this line together.

    40 min
5
out of 5
8 Ratings

About

Conversations about navigating hereditary cancer risk. Join us to talk about life between the scans, and how finding out you have a genetic mutation can be a portal to emotional, relational and intergenerational healing.

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