Understanding the Evolution of Neuroendocrine Cancer

In medicine, there’s an old saying: “When you hear hoofbeats, think horses, not zebras.” It’s a reminder to look for the most common explanation first. But for people living with neuroendocrine cancer… zebras matter. What happens when a slow-growing tumor begins behaving aggressively? When a diagnosis evolves over time? Or when the biology of a tumor no longer matches the original pathology report?

For people living with neuroendocrine cancer, these changes can be frightening. But understanding them may also open the door to better treatment decisions, more personalized care, and new directions in research.

In this episode of NETWise, we explore the evolving science of tumor heterogeneity, grade progression, and changing biology in neuroendocrine cancers — alongside the very human stories of living through those changes.

Leading experts inluding Dr. Aman Chauhan (UCSF), Dr. Nancy Joseph (UCSF), Dr. Mark Lewis (Intermountain Healthcare), and Dr. Jaydira Del Rivero (National Cancer Institute) discuss the latest research and clinical insights surrounding these important questions.

You’ll also hear powerful personal stories from Shari Schutz and Barbara Dunham, who share their experiences navigating changing diagnoses, evolving pathology, treatment transitions, and the importance of self-advocacy.

Topics discussed include:

  • Why the zebra became the symbol of neuroendocrine cancer
  • Tumor heterogeneity and why no two NETs are alike
  • Grade progression and changing tumor biology
  • NETs, NECs, and MiNENs explained
  • The role of pathology review, re-biopsy, and advanced imaging
  • DOTATATE PET and FDG PET scans
  • Treatment adaptation and personalized care
  • Patient advocacy, resilience, and living with uncertainty

As researchers continue to learn more about how neuroendocrine cancers evolve, understanding these changes may help patients and caregivers make more informed decisions and better navigate the road ahead.

Learn more about neuroendocrine cancer research, education, and patient resources at NETRF.org.


#NETCancer #NeuroendocrineTumors #NETRF #NETWise #CancerPodcast #RareDisease #PatientEducation #NeuroendocrineCancer #CancerResearch #CancerAwareness

NET specialists included in this episode

Use our episode infographics to get a visual picture of some of the things we have discussed.

Nancy Joseph, MD, PhD
Professor of Surgical Pathology, University of California, San Francisco (UCSF)

Aman Chauhan, MD
University of California, San Francisco

Jaydira Del Rivero, MD
NET Specialist, National Cancer Institute (NCI)

Mark Lewis, MD, Intermountain Healthcare

Mark Lewis, MD
Director of Gastrointestinal Oncology, Intermountain Healthcare

A special thank you to Shari Schutz and Barbara Dunham for sharing their neuroendocrine cancer journey.
Download a transcript of this episode.