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