Turning a Rare Diagnosis into Purpose

Helen Szablya was caught off-guard when she received a diagnosis of a rare appendix cancer variant. Facing confusion, fear, and the unknown, she didn’t simply retreat — she chose to step forward. Helen’s journey became about more than treatment. It became a mission: to raise awareness of how this little-known disease shows up, why delayed diagnosis happens, and how patients like her can advocate for better care.

She learned the signs weren’t always dramatic — symptoms like abdominal discomfort, bloating or unexplained fullness often get dismissed or attributed to less serious conditions. What stood out in Helen’s experience was the challenge of getting timely referral to a specialist center equipped to treat cancers of the appendix and peritoneal surface.

But Helen also witnessed hope: When she connected with a multidisciplinary team, she discovered treatment strategies that improved her prospects. Her advocacy work today seeks to empower patients and caregivers with two-fold focus: spotting the red flags early, and ensuring that when a diagnosis lands, patients get access to physician teams familiar with appendix-based cancer and advanced options like cytoreductive surgery (CRS) plus intra-abdominal chemotherapy.

Helen’s story is a powerful reminder of why awareness, early detection, and access to specialized care matter so deeply. Her courage in facing a rare and often misunderstood cancer shines a light on the thousands of patients who walk a similar path. Through her experience, we’re reminded that education, connection, and research are key — and that no one facing appendix cancer should have to do it alone. The Alliance remains committed to supporting patients like Helen and advancing understanding of rare abdominal cancers so that more stories end with hope.

Read the Story in the El Segundo Herald