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