Sarcoma Stories

We return from winter break and are joined by Crystal Malaka, 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 of...

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...

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 p...

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 s...

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...

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...

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...

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 through adaptive sports. Discovering wheelchair basketball in high school, she’s gone on to become a Paralympic athlete, channeling her strength and determination both on and off the court.

A champion on the co...

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.

Dan has had to make numerous informed decisions about the best courses of action for his treatments - and from clinical trials to taking a more palliative approach - Da...

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 be able to be a part of Brian's reflection and discuss so many topics like what to say to support someone during a sarcoma diagnosis, giving...

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 how running has become both a way to support the sarcoma community and an essential outlet for his own self-care. With his trademark humor and candid honesty, Shaun shines a light on the emoti...

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 conversation also addresses systemic inequities that minority patients often encounter within the medical system, exploring how these can create barriers to care and foster mistrust. It underscores the need for continued dialogue within the sarcoma community to ensure all individuals have equitable...

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 impactful advocacy work, her leadership role in the Race to Cure Sarcoma Louisville, and the support she's found along the way. Tune in to hear Katie's powerful story and learn from her experiences.

Stand Up To Sarcoma...

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: @jgoodmansagehttps://www.instagram.com/jgoodmansage/

Jenny’s LinkedIn: https://www.linkedin.com/in/jenny-goodman-sage-333200a4/

CIC-DUX4 Subtype: https://curesarcoma.org/sarcoma-subtypes/cic-rearranged-sarcoma/

Sarcoma Patient Experience Survey: https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/?fbclid=PAZXh0bgNh...

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/sarcoma-subtypes/osteosarcoma/

Sarcoma Stories Facebook Group: https://www.facebook.com/groups/512452631597704/

Mike's Instagram: https://www.instagram.com/mikec829/

RTCS Boston: https://curesarcoma.org/boston

Sarcoma...

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 bring the Race to Cure Sarcoma to Austin, Texas for its inaugural Austin race on March 22nd, 2025.

Content Warning: Death from sarcoma, death of a child.

Aubrie's Subtype: https://curesarcoma.org/sarcoma-subtypes/cic-rearranged-sarcoma/

...

In this episode, we speak with the Brenneman family who lost their father and husband, David, 12 years ago. We discuss the care partner experience of navigating a spouse's sarcoma diagnosis while also raising young children and what it has been like for the family to find connection to David after his passing. The Brenneman family shares about how this experience has fit into their lives and evolved over the years and talk about their unique experience walking the Camino de Santiago to raise awareness and funds in support of the sarcoma community. Thank you to the Brenneman family for...

We're thrilled to welcome Susie Donohue, a uterine leiomyosarcoma survivor, for our third episode! We talk about navigating a new sarcoma diagnosis, what exactly a sarcoma center is, and the decision to disclose or not disclose your diagnosis at work.

Join us after the episode on our new Sarcoma Stories Facebook group to discuss the episode. https://www.facebook.com/groups/512452631597704

Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/

Sarcoma Centers: https://curesarcoma.org/support-resources/treatment-centers/

Race to Cure Sarcoma: https://curesarcoma.org/race-to-cure-sarcoma/

We're thrilled to welcome Jenna Pothier for our second episode! Join us as this DFSP survivor shares the importance of shared decision making between care team, patient, and care partners. She also talks about the challenges of being an adolescent young adult going through a life changing diagnosis during big life transitions, finding supportive communities and purpose in advocacy work, and shares her advice on supporting someone during their sarcoma diagnosis.

Join us after the episode on our new Sarcoma Stories Facebook group to discuss the episode. https://www.facebook.com/groups/512452631597704

Where...

Join us for our first episode of our new podcast "Sarcoma Stories". We're thrilled to welcome our first guest, Natasha Allen! Join us as this synovial sarcoma survivor shares her inspiring journey, from diagnosis and clinical trials to using social media as a therapeutic tool and platform for awareness.

Join us after the episode on our new Sarcoma Stories Facebook group to discuss the episode. https://www.facebook.com/groups/512452631597704

Where to connect with Natasha

IG: @natashaallen

TikTok: https://www.tiktok.com/@possiblynatasha