Sarcoma Stories

On this episode, in honor of Sarcoma Awareness Month, Brendan Locke shares the sarcoma journey of his wife, Melissa Locke. Brendan and Melissa have been vital in the advocacy work to get July nationally recognized as Sarcoma Awareness Month and you’ll hear the origin story of how they first brought this to their elected officials in partnership with SFA. Through emotional reflections on Melissa’s...

On this episode, we’re joined by Rohini Deivasigamani, a 25-year-old from New Jersey who was diagnosed with Ewing sarcoma at 14 years old. Now, a decade later, she reflects on her journey from teenage cancer patient to young adult survivor and shares how time and perspective have shaped the way she processes that experience. Rohini shares not only about her own diagnosis and treatment, but also ab...

This week, we speak with Sarah Downey, an angiosarcoma patient, advocate, and writer. Sarah takes us through her diagnosis journey, which included misdiagnosis and dismissal of symptoms, all while navigating her senior year of college. Since her diagnosis, she has navigated treatment as she’s entered young adulthood, and shares with us what it’s been like coping with the uncertainty of sarcoma alo...

On this episode, we speak with Gianna Cericola, a survivor of Desmoplastic Small Round Cell Tumor (DSRCT for short). After two long years, she rang the bell signifying the end of active treatment just two weeks before we recorded this episode. We feel so lucky to be able to sit down with her at this pivotal moment of transition. Gianna opens up about what being done with treatment actually means,...

On today’s episode we’re sharing the sarcoma story of one of our Sarcoma Stories hosts, Tasha. Tasha has been hosting Sarcoma Stories since its inception in November 2024 and she’s now sharing her story about her Embryonal Rhabdomyosarcoma diagnosis. We also talk about some of the transitions happening at SFA with Tasha’s role as she embarks on a new endeavor, starting her program - Move Anyway -...

On this episode, we speak with SFA Director of Europe’s Strategy and Engagement, Pan Pantziarka. While he is an incredible staff member at SFA who supports SFA’s global work, he also has a sarcoma story of his own as a care partner to his son, George. After George was diagnosed with three different primary cancers and passed in 2011, Pan quit his job in the corporate sector and found work in oncol...

In this episode, we sit down with Kate DeForge, who was diagnosed with undifferentiated pleomorphic sarcoma as a young adult. Kate opens up about what it’s been like navigating young adulthood with sarcoma, and shares the mindset and philosophy that have shaped how she lives her life since her diagnosis. We’re also joined by Kate’s sister, Kristen, who offers her personal perspective on being on t...

On this episode, we’re joined by Simone Cheatham, a member of the Race to Cure Sarcoma Chicago Committee. Simone became actively involved after her late father, Hardin—lovingly referred to as “Dad” throughout this episode—was diagnosed with sarcoma. Hardin’s journey with sarcoma was unique. His sarcoma diagnosis came shortly after he had already been diagnosed with breast cancer, leading Simone an...

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...

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 p...

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...

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....

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 tu...

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 se...

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’...

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 sarc...

On this episode, we’re joined by Emily Oberst, an Ewing sarcoma survivor. Emily shares her experience navigating childhood cancer — from the decision making around surgery as an active young person to considering fertility preservation at an age when most kids are thinking about school, sports, and friends. As she transitioned out of treatment and into young adulthood, Emily found empowerment thro...

On this episode, we sit down with Dan Rubin, who was diagnosed with Ewings sarcoma in 2017 and has since navigated many, many different types of therapies to manage his diagnosis. Dan’s unique record keeping system, which we dive into throughout the episode, along with the incredible support of his wife Katharine, has allowed Dan to navigate his care and advocate for himself throughout the years....

On this episode, we speak with Brian Fugere, who is a synovial sarcoma survivor of 20 years. Brian shares his perspective on what the sarcoma landscape looked like 20 years ago at the time of his diagnosis, taking us through his treatment journey and how his marathon running has been an outlet for him to not only give back to the sarcoma community, but also reclaim his life. We are so fortunate to...

On this episode of Sarcoma Stories, we welcome Shaun Nerney—actor, singer, performer, Dorito enthusiast and avid Knicks fan—to share his journey as a care partner to his fiancée, Meghan, who has been living with fibromyxoid sarcoma on the dura of her brain. Shaun reflects on meeting Meghan after her diagnosis, how his role has grown alongside their relationship and her treatment experience, and ho...

On this episode, we speak with Margaret Livermore, a member of SFA's Public Policy Committee and a dedicated advocate for the sarcoma community. Margaret shares her experience with leiomyosarcoma, first diagnosed in 2002 and recurring 16 years later. She discusses the importance of self-advocacy for informed decision-making and the value of supporting others facing similar situations. The conversa...

Join us as we speak with Katie Wintergerst, who shares her personal experience with synovial sarcoma. Katie discusses the importance of seeking multiple opinions at sarcoma centers to make informed treatment decisions and provides valuable insights into participating in early-phase clinical trials. We also explore her journey as a single parent of two young children while living with sarcoma, her...

On this episode we speak with Jenny Sage, a parent of a pediatric sarcoma survivor, Gracie. Jenny shares her perspective on advocating for children with sarcoma and others in the sarcoma and pediatric cancer communities. We discuss supporting children and families through a sarcoma diagnosis, the importance of emotional processing, and ways to help others. Jenny’s Instagram: @jgoodmansage https://...

Mike Cacioppo, diagnosed with osteosarcoma in 2021, shares his experience of being a part of the sarcoma community as well as the amputee community and how advocacy for both has become a part of his life. He also talks about parenting while navigating a sarcoma diagnosis and how he maintains an optimistic mindset through all of the challenges he's faced. Mike's Subtype: https://curesarcoma.org/sar...

On this episode, Maria shares the sarcoma journey of her daughter Aubrie, who was diagnosed with CIC-DUX4. Maria speaks about the diagnosis experience of a teenager, including having conversations about fertility preservation before starting chemo and ways she's honoring Aubrey after her passing. While working to fulfill her daughter's bucket list, Maria has also been the driver for helping SFA br...