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

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/

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

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: [email protected]

Instagram @barry.dude

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

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

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/512452631597704
• Connect with Breon & Leia: https://www.tiktok.com/@hey_rookiehttps://www.tiktok.com/@justleiaaa

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 court and for the sarcoma community, Emily shares insights on finding courage and building confidence,in the face of a life-changing diagnosis.

Links:

Fertility & Adoption Grants for Cancer Survivors: https://worththewaitcharity.com

Subtype Page: https://curesarcoma.org/sarcoma-subtypes/ewing-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/

Stand Up To Sarcoma Gala: https://curesarcoma.org/ways-to-help/stand-up-to-sarcoma-gala/

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

AYA Facebook Group: https://www.facebook.com/groups/733435902222520

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

Connect with Emily: https://www.instagram.com/emily_oberst/

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 - Dan has so much experience to share with the sarcoma community.

As a 7 time marathoner, we talk about how exercise has continued to support Dan through his diagnosis and how he’s maintained his positive mindset 95-98% of the time.

Links:

Ewing Sarcoma Subtype Page: https://curesarcoma.org/sarcoma-subtypes/ewing-sarcoma/

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

RTCS Marine Corps Marathon team: https://fundraisers.hakuapp.com/teams/sarcoma-foundation-of-america-2?partner=ce52206b901f55550cf5

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/

Stand Up To Sarcoma Gala: https://curesarcoma.org/ways-to-help/stand-up-to-sarcoma-gala/

Caregiver Connect FB Group: https://www.facebook.com/groups/1342913339758774

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

Dan's Blog: https://rwoac24.substack.com/

Dan's LinkedIn: https://www.linkedin.com/in/dan-rubin-48318a17/

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 permission to be honest about how you're feeling and the important roles of care partners in our life.

Links:

Synovial Sarcoma Subtype Page: https://curesarcoma.org/sarcoma-subtypes/synovial-sarcoma/

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

RTCS Marine Corps Marathon team: https://fundraisers.hakuapp.com/teams/sarcoma-foundation-of-america-2?partner=ce52206b901f55550cf5

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/

Stand Up To Sarcoma Gala: https://curesarcoma.org/ways-to-help/stand-up-to-sarcoma-gala/

Caregiver Connect FB Group: https://www.facebook.com/groups/1342913339758774

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

Brian’s Email: [email protected]