In this episode of Patient Innovations, Rashmi and Shannon dive into one of the most overlooked challenges in healthcare: rare disease detection, focusing on nasopharyngeal carcinoma (NPC), sometimes called nasal cancer. NPC forms deep in the upper throat behind the nose, and its early symptoms—persistent congestion, nosebleeds, ear fullness, hearing changes, or headaches—can feel minor and easily dismissed. Yet for many patients, these subtle signs lead to delayed diagnosis, fragmented care, and life-altering consequences. This conversation grounds NPC in lived experience, clinical insight, and innovation—highlighting where delay happens and how we can do better.

The episode brings together three powerful perspectives:

Michael Arulfo, Chief AI Officer and CTO at Cadre, shares his personal journey with NPC—from early symptoms that were easy to overlook to navigating diagnosis and treatment. His story reflects the emotional toll of uncertainty, moments of feeling unheard, and the importance of persistence and patient advocacy when something doesn’t feel right.

Dr. Amy Anne Lassig, head and neck surgeon at Hennepin Healthcare, offers clinical clarity on why NPC is often diagnosed late. She explains how its location makes early detection difficult, how symptoms overlap with more common conditions, and how risk factors like Epstein-Barr virus can inform clinical suspicion. She also shares how clinicians approach treatment and the challenges of navigating rare cancers within complex care systems.

Dan Que Pham, co-founder and CEO of Oncodea, highlights innovation in early cancer detection. She discusses how advances in blood-based diagnostics, nanophotonics, and AI are working to identify cancer earlier, reduce delays, and expand access to timely, life-saving care.

Key takeaways from the conversation include:

Rare diseases like NPC are often missed because early symptoms appear common and non-specific.

Delays in diagnosis are shaped by both clinical complexity and system-level gaps in awareness and pathways.

There is no one-size-fits-all journey; patient advocacy and persistence play a critical role in getting answers.

Clinicians must balance probability with possibility, especially when symptoms persist without resolution.

Innovation in early detection has the potential to significantly improve outcomes and reduce disparities.

Listening to patient stories is essential to improving recognition, reducing delay, and saving lives.

Links & Resources:

Nasopharyngeal Carcinoma & Rare Cancer

American Cancer Society: https://www.cancer.org

National Cancer Institute: https://www.cancer.gov

Head & Neck Cancer Care

Hennepin Healthcare: https://www.hennepinhealthcare.org

Innovation in Early Detection

Oncodea: https://oncodea.com

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