Sarcoma Stories

Sarcoma Foundation of America
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We're excited to announce, "Sarcoma Stories" a new podcast from SFA. Sarcoma Stories is the only podcast highlighting the journey and experiences of people living and surviving sarcoma. Each episode will feature a guest sharing their sarcoma journey, resources they found valuable and more. Search Sarcoma Stories on your favorite podcast platform and be sure to follow to get updates on our latest episodes. We will also have a post episode discussion on our new facebook group. Join Now: https://www.facebook.com/groups/512452631597704

  1. Julie Harp

    2月6日

    Julie Harp

    In this episode, we speak with Julie Harp, who shares her experience as a care partner to her son, Don, during his sarcoma journey and as he approached the end of life. Julie offers a unique and powerful perspective on caring for an adult child through terminal illness. Julie reflects on Don’s path to diagnosis, including misdiagnosis and the feeling of being lost within the medical system. Julie emphasizes the importance of self-advocacy and the need for better systems to help patients navigate the healthcare system and achieve timely care. She also shares how she continues to honor Don’s legacy through her advocacy work, fighting for better awareness, research, and outcomes for sarcoma patients. With courage and compassion, Julie not only tells Don’s story and her family’s experience with sarcoma but also reminds us of the importance of being an audible voice for inaudible voices, as we continue to push for better treatments and hope for all affected by sarcoma. Links Subtype Page: https://curesarcoma.org/sarcoma-subtypes/undifferentiated-pleomorphic-sarcoma/ Sarcoma Patient Pathways Survey: https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/ Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/ Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704 Connect with Julie: IG @juliejharp Email: juliejharp@gmail.com

    1 小時 14 分鐘
  2. Crystal Mollica

    1月9日

    Crystal Mollica

    We return from winter break and are joined by Crystal Mollica, a malignant peripheral nerve sheath tumor (MPNST) survivor. After receiving an initial misdiagnosis, Crystal trusted her instincts and advocated for a second opinion—one decision that ultimately led to an accurate MPNST diagnosis and life-saving care. That diagnosis resulted in a permanent colostomy, a urostomy, rectum removal, and a partial hysterectomy. Crystal talks about navigating this new normal, adjusting to a different lifestyle, and processing the emotional and physical experience of such major surgeries. She also shares how social media offered education and community during a time when she was searching Reddit and Instagram to learn how to live with a double ostomy. Now, Crystal pays it forward by sharing her own tips, tricks, and encouragement, reminding others that life as a double ostomate can absolutely be full, joyful, and meaningful. This conversation is a powerful reminder of the importance of self-advocacy, especially within rare cancer spaces like the sarcoma community. Thank you, Crystal, for your vulnerability, honesty, and commitment to helping others through your story. Links Subtype Page: https://curesarcoma.org/sarcoma-subtypes/malignant-peripheral-nerve-sheath-tumour/ Sarcoma Patient Pathways Survey: https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/ Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/ Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704 Connect with Crystal: @double.ostomy.gal

    57 分鐘
  3. Carol Haslam

    26/11/2025

    Carol Haslam

    In this episode, we sit down with Carol Haslam of Sarcoma Cancer Ireland. Carol not only is a board member and driving force behind the organization’s operations, but she is also a synovial sarcoma survivor and passionate patient advocate. As our first international guest, Carol offers a deeply personal look at her diagnosis and treatment journey in Ireland. She reflects on the road to getting her diagnosis and then the practicalities of navigating care, stepping away from her career as a florist after discovering the sarcoma was in her hand, and what it meant to raise two young children while facing cancer—all while maintaining the unmistakable humor you’ll hear throughout our conversation. Carol also shares the origin story of Sarcoma Cancer Ireland and illustrates what powerful, grassroots advocacy looks like. From helping bring a sarcoma specialist to Ireland to collaboration across the global sarcoma community, she shows how collective voices can drive meaningful change. This episode is rich with storytelling, insight, vulnerability, and—yes—plenty of laughter. It’s an inspiring and uplifting conversation you won’t want to miss. Let’s dive in! Subtype Page: https://curesarcoma.org/sarcoma-subtypes/synovial-sarcoma/ Sarcoma Patient Pathways Survey: https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/ Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/ Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704 Sarcoma Cancer Ireland: https://sarcoma.ie/ https://www.facebook.com/sarcomacancerireland https://www.instagram.com/sarcomacancerireland/ https://www.linkedin.com/company/sarcoma-ireland/

    1 小時 10 分鐘
  4. Joel & Amanda Stetler

    12/11/2025

    Joel & Amanda Stetler

    On today’s episode, we’re joined by Joel and Amanda Stetler — a dynamic couple from California. Joel has been knowingly living with a low-grade fibromyxoid sarcoma, and in the ten years since his diagnosis, the Stetlers have parented three children, Amanda has pursued a doctorate degree, Joel has navigated career changes, they’ve traveled, and—true to their motto— they have certainly lived loudly. In our conversation, Joel and Amanda share both the patient and care partner perspective on the frustrating journey to diagnosis, what life has looked like since, the honest conversations they’ve needed to have, and perspectives that have helped them continue living loudly, even when life feels most uncertain. Living in the sarcoma world can feel isolating. We often look to one another—patients and care partners who understand this experience—for community, perspective, and hope. Joel and Amanda are the type of people who offer that simply by being themselves, and we’re so grateful they’ve come on the podcast to share their story with our community.A huge thank-you to Joel and Amanda for joining us Subtype Page: https://curesarcoma.org/sarcoma-subtypes/low-grade-fibromyxoid-sarcoma/ Sarcoma Patient Pathways Survey Discussion Guide Sarcoma Stories FB Group Connect with Joel & Amanda: Joel’s Instagram: @hey_mr_stetler Amanda’s Instagram @rhythm_and_light

    1 小時 8 分鐘
  5. Chris Barry

    29/10/2025

    Chris Barry

    On this episode, we sit down with Chris Barry, a rare disease patient and desmoid tumor survivor, dad, and civil engineer living in the San Francisco Bay Area. Diagnosed with familial adenomatous polyposis (FAP) as a teenager and later with a large desmoid tumor, Chris has faced immense medical challenges — including chemotherapy, major surgeries, and an intestinal transplant — yet continues to turn adversity into advocacy. Through this conversation and his personal reflections, this episode shines a light on the realities of living with a desmoid tumor and FAP, a diagnosis often described as “benign,” or “not that severe” - a phrase that can be deeply misunderstood. Join Chris as he shines a light on what “benign” can actually mean for a desmoid tumor patient, where his journey took him, and how he became involved in the sarcoma community to help advocates for others who find themselves in a similar position. Links: Subtype Page Sarcoma Patient Pathways Survey Discussion Guide Sarcoma Stories FB Group Connect with Chris: E-mail: cbarry04@gmail.com Instagram @barry.dude

    51 分鐘
  6. Andrey Ivchenko

    10/09/2025

    Andrey Ivchenko

    On this episode of Sarcoma Stories, we’re joined by actor Andrey Ivchenko as he shares his powerful journey through a chondrosarcoma diagnosis. While you may not be familiar with Andrey’s sarcoma story, you might recognize him as the villain Grigori in Stranger Things Season 3 or as Perseus in Call of Duty. After being initially misdiagnosed, Andrey's story highlights the critical importance of self-advocacy. In this candid and engaging conversation, we discuss the isolation that can come with a rare cancer diagnosis, the vital role of a care partner, the importance of ongoing research, and how prosthetics are used in sarcoma treatment. Following an extensive hemipelvectomy and hip replacement, Andrey is now in recovery—gaining strength to return to the screen, and using his platform to raise awareness and advocate for the sarcoma community. Thank you so much, Andrey, for joining us and sharing your story. Links: Central Chondrosarcoma, Grades 2 and 3 Stand Up to Sarcoma Gala Sarcoma Stories FB Group Sarcoma Survey Andrey's Facebook Andrey's Instagram

    55 分鐘
  7. SFA's Founders

    05/09/2025

    SFA's Founders

    We’re back from our summer hiatus with a very special episode to kick off Season 2! August 2025 marked the beginning of SFA’s 25th anniversary year, and we couldn’t think of a better way to celebrate than by going back to where it all began—with a conversation featuring SFA’s three founders: Dr. Mark Thornton, Tricia Thornton, and Dr. Jack Brooks. In this episode, you'll hear the story behind SFA’s founding—from the spark of an idea to the early, humbling days, through years of growth and impact. Mark, Tricia, and Jack reflect on the journey so far, what they’re most proud of, and their hopes for the future of the sarcoma community and the organization over the next 25 years. Listen in—and join the conversation! If you have questions for Mark, Tricia, or Jack, head over to our Sarcoma Stories Facebook Group and ask away. We’d love to hear from you! Links: About SFA Funded Research Through the Years Stand Up to Sarcoma Gala Race to Cure Sarcoma Sarcoma Stories FB Group Sarcoma Survey

    1 小時 4 分鐘
  8. Breon and Leia Glass

    11/07/2025

    Breon and Leia Glass

    On this episode, we speak with Breon and Leia Glass. Breon, a 29-year-old synovial sarcoma survivor and law enforcement officer, found his tumor while on a foot pursuit. He takes us through his diagnosis journey, the decision for amputation as part of his treatment plan, and how he has adapted to his new normal since then. His wife, Leia, provides insight into supporting a loved one through a sarcoma diagnosis. Together, they emphasize the importance of personal research, living life fully despite a diagnosis, and seeking support. They both highlight the unwavering support from their family and Breon's law enforcement colleagues. There is no doubt that Breon and Leia are strong, but together, they are a powerhouse team. We were fortunate to sit down for this conversation with both a patient and care partner, husband and wife, for the first time on Sarcoma Stories. Thank you to Breon and Leia for sharing your journey and your insights with us. Episode Links: Subtype Page: https://curesarcoma.org/sarcoma-subtypes/synovial-sarcoma/Sarcoma Patient Pathways Survey: https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704Connect with Breon & Leia: https://www.tiktok.com/@hey_rookiehttps://www.tiktok.com/@justleiaaa

    55 分鐘
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關於

We're excited to announce, "Sarcoma Stories" a new podcast from SFA. Sarcoma Stories is the only podcast highlighting the journey and experiences of people living and surviving sarcoma. Each episode will feature a guest sharing their sarcoma journey, resources they found valuable and more. Search Sarcoma Stories on your favorite podcast platform and be sure to follow to get updates on our latest episodes. We will also have a post episode discussion on our new facebook group. Join Now: https://www.facebook.com/groups/512452631597704

資料

  • 創作者
    Sarcoma Foundation of America
  • 活躍年份
    2024年 - 2026年
  • 單集
    21
  • 分級
    兒童不宜
  • 節目網站
    Sarcoma Stories