Expert Advice and Resources for Patients with Neuroendocrine Tumors

In observation of Neuroendocrine Tumors (NETs) Awareness Month, Dr. Pamela L. Kunz sat down for an interview with CURE to discuss resources and ongoing initiatives that may help patients with this disease.

In the interview, she explained that it’s important to work with an experienced NET specialist, as well as use patient advocacy groups and educational resources to stay informed and supported.

Additionally, Kunz, who is the professor of Internal Medicine (Medical Oncology) and director of the Center for Gastrointestinal Cancers at Smilow Cancer Hospital and Yale Cancer Center, where she also serves as chief of GI Medical Oncology,expanded on these key takeaways in a prior interview with CURE.

Transcript

Are there any specific resources or initiatives that you want to call out to help patients and caregivers better understand NETs?

For patients with NETs, because this is a less common cancer, I highly recommend having a NET expert on their care team. It doesn’t have to be the only physician they see; I partner with many local oncologists, and that’s a common model. Advocate for yourself and find someone who treats a lot of patients with NETs. I think that is incredibly useful and important.

There are several NET patient advocacy groups and physician professional societies that have patient education arms. Finding some of these organizations can be very helpful. For example, the North American Neuroendocrine Tumor Society, or NANETS, co-hosts patient events at several conferences throughout the year. The NET Research Foundation also hosts several patient events. LAC-NET, or Learning Advocacy Connect NET, organizes excellent patient programs. There are also many local community organizations and institution-based support groups.

I would suggest asking your physicians and visiting some of these national websites to learn more. Empowering yourself with information as a patient or caregiver is something you can control, and it can be very helpful in easing your mind and increasing awareness of available treatments and ongoing research.

Transcript has been edited for clarity and conciseness.

Reference

1. “Understanding the Diagnosis and Treatment of Neuroendocrine Tumors,” by Ryan Scott. CURE; Nov. 19, 2025. https://www.curetoday.com/view/understanding-the-diagnosis-and-treatment-of-neuroendocrine-tumors

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