Neuroendocrine Cancer: A Guide for Patients and Families has been a trusted resource for thousands of patients and caregivers navigating a neuroendocrine cancer diagnosis. The updated 2026 edition keeps the clear, reliable information patients and families have come to depend on, while expanding the guide to reflect advances in care and research as well as the evolving needs of the neuroendocrine cancer community.

The new edition continues to provide explanations of tumor sites, diagnostic testing, grade and stage, treatment options, symptom management, nutrition, and finding a specialist.

It also adds important new content, including comprehensive information on neuroendocrine carcinoma (NEC), a new chapter on thrivership, updated statistics, and expanded connections to NETRF educational resources.

Please note: If you already ordered a guide in 2026, your new printed patient guide is coming soon. There's no need to re-order. 

The FDA has approved lutetium Lu-177 dotatate injection (Bexlutry), a new option for adults with somatostatin receptor-positive gastroenteropancreatic neuroendocrine tumors (GEP-NETs). Bexlutry is a radioligand equivalent (RLE), a form of PRRT (peptide receptor radionuclide therapy) that shares the same active ingredient, dosing, administration, and expected efficacy and side effects as an already-approved lutetium radioligand therapy.

Read more.

Majid Momeny, PhD, has been named the 2026 recipient of the two-year, $100,000 grant made possible through NETRF’s support. This year’s NANETS Basic/Translational Science Investigator Award (BTSI), funded by NETRF, has been awarded to a project that investigates how neuroendocrine carcinomas survive treatment and how to take that defense away.

Read more.

The language used to describe neuroendocrine cancer is complex, and it is not always used consistently.

Patients encounter an alphabet soup of terms: NET, NEN, NEC, neuroendocrine cancer, carcinoid, neuroendocrine differentiation, well differentiated, poorly differentiated, high grade, low grade. Some describe different diseases. Some are older names that remain in use. Some are appropriate in one organ but not another. And sometimes the same term is used differently by different specialists.

If that sounds confusing, it is.

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People with neuroendocrine tumors (NETs) often ask why the same treatment can work very well for one person but have little effect for another. A related question comes up whenever there is news about a promising therapy in another cancer: If it works there, could it work for NETs too?

The fact is cancers that look similar can be biologically different, and cancers that start in different organs can sometimes share important biological features.

Read more.

When a routine test led to a diagnosis of neuroendocrine cancer, Tawnisha Jones set out to learn everything she could. Along the way, she found community and NETRF.

Today she advocates for her own health, supports fellow patients, and finds ways to give herself grace. 

Living with neuroendocrine cancer is about more than managing a diagnosis. It is also about caring for your emotional well-being, adapting to change, finding strength, and staying connected to what matters most.

In recognition of World Neuroendocrine Cancer Day, join NETRF for a special Thrivership Connect, an interactive virtual program focused on emotional well-being and resilience while living with neuroendocrine cancer.

Together, we will explore practical strategies for navigating the emotional challenges of cancer, strengthening resilience, supporting mental health, and finding ways to live well through uncertainty and change.

Tuesday, November 10, 2026
7:00 p.m. ET
Interactive Virtual Program

Come to learn, connect, share, and leave with practical tools to support your well-being throughout your neuroendocrine cancer journey.

GLP-1 medications have transformed the treatment of diabetes and obesity… and their use has exploded. But for people living with neuroendocrine cancer, they've also raised an important question: Are GLP-1s safe if you have neuroendocrine cancer? The answer isn't a simple yes or no. Researchers have discovered that some neuroendocrine tumors express the GLP-1 receptor, the same receptor targeted by GLP-1 medications.

In this episode of NETWise, we're taking a closer look at GLP-1-based medications, including drugs used for diabetes and weight loss, and what their growing use may mean for people with neuroendocrine cancer. Could these medications affect some neuroendocrine tumors? What does the research tell us so far, and where are the important unknowns? And how should patients think about the potential benefits of these medications alongside considerations such as nutrition, weight loss, and their cancer treatment?

Jake and Taylor Dawson led a day of fun and friendly competition in Omaha. 

On Sunday, August 23, Jake and Taylor Dawson welcomed more than 30 foursomes to Elmwood Golf Course in Omaha for the inaugural Good Scan Cans Classic, far exceeding their original goal of 18 teams. Jake founded Good Scan Cans following his own neuroendocrine cancer diagnosis, turning his experience into a powerful commitment to helping others. Featuring golf, raffles, and prizes, the tournament raised $20,000 to support NETRF-funded research and the Family Assistance Fund at the Fred & Pamela Buffett Cancer Center. Thank you to Jake, Taylor, and the entire Good Scan Cans community for making the inaugural tournament such an incredible success! 

On September 5, Ana’s birthday, 73 community members gathered at Monarch View Park in Frisco, Texas, for Sowing Memories, a community clean-up and bluebonnet planting held in her memory. Ana died of neuroendocrine carcinoma at just 33 years old, leaving a legacy of fierce love for her family, the environment, and water conservation. Volunteers cleaned the surrounding green space, separated recyclables, and planted five pounds of drought-tolerant Texas bluebonnet seeds, creating a beautiful living tribute for Ana and her three children. The event also inspired gifts in memory of Ana to advance NETRF-funded research. We are deeply grateful to Ana’s family and community for honoring her life with such purpose and love. 

Ana's friends and family gave back to the community and to NETRF in her memory. 

The NETRF community is on the move this fall! From walks and golf tournaments to a special evening of support, every event brings people together to celebrate loved ones, raise awareness, and fuel progress in neuroendocrine cancer research. Find an event near you and join the movement!

18th Annual Firsty Family Moonlight Walk in memory of Julie Seltzer Firsty
September 25, 2026
Palo Alto, CA 

Frank DeBenedetto Memorial Golf Tournament
September 29, 2026
Nob Hill Golf Course
Manalapan, NJ

A Walk for Brandon hosted by the Raabe Family
October 2 through November 10, 2026
Virtual, with activities in Midland, TX and Cincinnati, OH

A Night for Sheryl, Hosted by Jim Jungsten
November 7, 2026
Fair Oaks, CA

Zebra Steps for Patricia
November 28, 2026
Kiwanis Park, Phoenix, AZ, and virtual

effNETs Fundraiser Golf Tournament, Hosted by Chris and Jessica Ochoa
November 20, 2026
Winter Garden, FL

Ironman 70.3 Aracaju-Sergipe, Leonardo Bichara Rocha
November 29, 2026
Aracaju, Sergipe, Brazil

If you would like to host a community event, please contact Steve Perna at steve.perna@netrf.org. 

When neuroendocrine cancer advocates from around the world gather, there's tremendous energy and commitment to serving the needs of patients and caregivers. NETRF's CEO Elyse Gellerman represented NETRF at the recent INCA Summit in Sofia, Bulgaria, joining advocates from 23 countries. INCA, the International Neuroendocrine Cancer Alliance, promotes increased awareness of neuroendocrine cancer, ensures access to treatments, and advocates for clinical trials and patient-centered research.

NET Research Foundation
100 Hancock Street,
Third floor
Quincy, MA 02171
(617) 946-1780 info@netrf.org

The mission of the Neuroendocrine Tumor Research Foundation is to fund research to discover cures and more effective treatments for neuroendocrine cancer. NETRF is the largest global funder of neuroendocrine research and a preeminent resource for expert patient education and support.



NETRF is a 501(c)(3) organization. All donations are tax-deductible to the extent allowed by law.