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The Neuroendocrine Cancer Foundation (NCF) participated in the 13th International Neuroendocrine Cancer Alliance (INCA) Global Patient Advocate Summit  in Sofia, Bulgaria, on September 8–9, 2025. NCF was one of 30 representatives from over 25 INCA member organizations worldwide who came together to collaborate on improving neuroendocrine cancer awareness, access to optimal diagnosis and care, and advancing research. NCF and INCA: A Growing Global Voice NCF joined INCA  in 2022 as its 32nd member. INCA is the global voice for patients with neuroendocrine cancer and genetic syndromes (GenNETs), representing 37 patient advocacy and research groups across 29 countries . Our connection to INCA is deeply rooted in our history: our late founder Giovanna Imbesi once dreamed of our organization joining this alliance to expand the global voice and reach. Today, that dream has been realized. NCF’s Director of Programs and Outreach, Lisa Yen is currently serving her third year on the INCA Executive Board as Treasurer. We are actively engaged in their programs including the NET Cancer Day  awareness campaign, Think NENs Global PCP program , and research bootcamp.  Sharing Best Practices and Inspiring Collaboration Prof. Rocio Garcia-Carbonero, ENETS  Chair, Dr. Jennifer Chan, NANETS  President, and Lisa Yen, Neuroendocrine Cancer Foundation Director of Programs & Outreach This year marked NCF’s fourth consecutive year  attending the Summit. Alongside physician-scientist leaders from the European Neuroendocrine Tumor Society (ENETS) , the North American Neuroendocrine Tumor Society (NANETS) , and other renowned experts, INCA delegates exchanged best practices, explored ways to strengthen ongoing projects, and generated new ideas to address global gaps in neuroendocrine cancer care. Attendees left the Summit feeling inspired, encouraged, and motivated by the collective efforts of the community. NCF was honored to present interviews with NET researchers , highlighting best practices and challenges in advancing neuroendocrine cancer research. We also shared our unique approach to making clinical trial information more accessible to patients—complete with practical tips, lessons learned, and a memorable “show-and-tell” of our portable equipment. Spotlight on Patient Involvement in Research Dr. Jennifer Chan, President of NANETS , delivered a powerful presentation on the importance of meaningful patient involvement in neuroendocrine cancer research, which has tripled in the past decade. She emphasized the value of collaboration from the earliest stages of research design—for both patients and researchers. Dr. Chan highlighted NCF’s presentation as a model of collaborative engagement. Her slides also featured our NET VITALS   publication in the Journal of Clinical Medicine , underscoring the impact of our work. Read the full article here>>> Dr. Jennifer Chan presenting at the 2025 INCA Summit We were also grateful for the opportunity to sit down with Dr. Jennifer Chan and Dr. Jaydira Del Rivero (NCI/NIH) for in-depth conversations on: Advancing Neuroendocrine Cancer Research: Clinical Trials, Patient Involvement, and International Collaboration: A Discussion with Dr. Jennifer Chan and Dr. Del Rivero at the 2025 INCA Summit Download Transcript >>> 2025 Highlights and Future Directions in Neuroendocrine Cancer: An Interview with Dr. Jennifer Chan at the 2025 INCA Summit Download Transcript >>> Add Your Voice: SCAN 2025 Survey YOU can help shape the future of neuroendocrine cancer care. Patients, caregivers, and healthcare professionals are invited to participate in the Survey of Challenges in Access for Diagnostics and Treatment for NET Patients (SCAN) 2025 . Please share your perspectives by November 30, 2025. Learn More For more highlights from the 13th INCA Global NET Patient Advocate Summit, visit INCA’s official blogpost:🔗  Read INCA’s Blogpost .

Alexandra Frost with her family. Six months ago, I’d never heard of a NET. That all changed quite swiftly when an emergency gallbladder scan inadvertently revealed a 4.2 cm tumor in my appendix, which had spread to lymph nodes in the intestines. You never know what topics you’ll find yourself immersed in as life takes its unexpected twists and turns, but as a longtime journalist, I found myself deep-diving down a research hole into a world I knew nothing about.  I wish I’d had the 2025 Neuroendocrine Cancer Foundation Virtual Conference  six months ago, as I tried to get a grasp on this rare condition that upended my perception of life as a busy, working mom with five little kids. I wish I had the community-driven camaraderie that both patients and doctors have built inside this community and the world of NETs right from the beginning. Yet, I’m thankful to have it now, especially given the theme of how to make your “next best decision.” The 2025 virtual conference brought 19 leading NET physicians , and multiple other patient advocates together, including my own oncology team at The Ohio State University — The James Comprehensive Cancer Center. Here’s what I found as I explored this conference along with the hundreds of other patients and community supporters following along from across the globe. The 10-Minute Tutorial We All Need From the Start Any NET patient remembers the first time they learned that acronym. And most will remember the disoriented confusion that follows, as you try to get a grasp on having a rare condition that acts much differently than cancers your friends or family might have experienced.  The conference led with my own oncologist, Dr. Bhavana Konda , giving an ultra-clear and informative tutorial on what NET really is. The next time I see her I will let her know that those 10-15 minutes of learning should be mandatory viewing for anyone heading into their first NET appointment. It took much longer for me to piece this information together on my own, pulling pieces of information from my own first meeting with her where she flipped a paper over and started drawing some of the concepts to introduce me to my version of this cancer. As NET patient Jed shared later in the conference, having “as much information as possible…was very reassuring to me.” So, if I ever come across a newly diagnosed NET acquaintance in one of the many online support forums, I will recommend my own oncologist’s overview, so they aren’t trying to figure out what Gallium 68 and Ki-67 mean on Google at 3 am, learning and worrying. The Long and Windy Path to an Accurate Diagnosis My tumor had been growing for years, possibly even a decade, before I found out. It had been the source of numerous symptoms that had been mistaken for perinatal symptoms, menopause (which I’m not in), a thyroid disorder, various gastro and neuro conditions (that I don’t have) and more. I found out in this conference that I’m far from alone, and in fact, this is a common complaint when someone finally discovers it was NET all along. Dr. Callisia Clarke , surgical oncologist at Medical College of Wisconsin, shared that it's so prevalent that she makes room for it at the beginning of her appointments before jumping into treatments.  Like me, she says many patients come to her having had some “uncomfortable interactions with the healthcare setting…and may have had mild symptoms that have been ignored or not worked up for several years,” she shares. “I try to give them the opportunity to work through their frustrations with what is almost always a delay in diagnosis.” Only after they get through those emotions do they discuss treatment plans, she says.  I left her session with validation that the nearly decade long medical mystery, which meant numerous doctors writing off my symptoms or promising to “wait and see” was not only common, but somewhat traumatizing. That recognition helps me start to heal, and retrust that when my body is telling me something, it’s right — even if nobody is sure what it means yet. Isn’t There a Blood Test for That?  After two surgeries to remove my tumors and lymph nodes, my Stage 3 cancer was “NED”, or No Evidence of Disease. I started a 10 year clock of watching and waiting to determine if I’d be part of the 65% of people in my exact situation with no recurrence, or part of the other 35% who had metastasizing, and therefore Stage 4 NET. The scanning every three months schedule commenced.  In explaining all this to a friend with colorectal cancer, she asked — isn’t there a blood test like I got to detect recurrence early? When I asked my medical team about it, they simply said no, I wasn’t a candidate for that. At the time, I sort of thought I’d been blown off. But, after listening to Dr. Thorvardur Halfdanarson , Mayo Clinic discuss biomarkers and blood tests in his session, I realized why it is actually a much more complicated answer, best summarized as “there’s not a reliable one ready to widely use for NETs yet .” In Halfdanarson’s session, I learned the complexities of my question, and that no biomarker is ready to take the place of scans. I felt empowered learning about 5-HIAA testing, and more educated to bring questions about that test to my next oncology appointment. Most importantly, I got an inside view into the multitude of considerations oncology teams have when they determine if a test will do more harm than help. For example, Halfdanarson shared that super early detection, without a scan with a visible tumor, might not do anything except increase anxiety and pile additional testing costs onto patients. So, I will look at future therapies as they are approved and recommended with the same consideration — what does it add to the potential treatment plan, but what are the less obvious risks.   Living With the Bucket List and Depression of NETS One of the most valuable sessions was from another new NET patient, Rashilda’s story. I perked up at her honesty that when she was asked to give this talk in February, she felt she was “barely surviving.” I’d been there as well, especially in the gray area between knowing I had cancer but not knowing how bad it was. I’ll forever be changed by that time where I didn’t know if I’d have just a few years left with my young family, or the decades I’d been expecting. I learned from Rashilda what to do the next time a scan doesn’t go my way, and the dark cloud moves in. She restarted therapy, and started going to a NET support group  to manage anxiety around her next scans. And she speaks to the unique experience some NET patients have, where they go on to live their normal lives, as they carry their diagnosis around in their hearts and bodies. “Unlike many other people with different forms of cancer, I still work, I still do all the things that I used to do, before the diagnosis. So while I do have this disease and it’s been a mental struggle, physically I’m still able to do all the things I love doing,” she says. I was inspired by Rashilda who says her NET diagnosis helped her prune her daily commitments to only focus on activities that brought her joy. “If it’s something I don’t want to do I’m not going to force myself to do it,” she says. She’s working down a bucket list full of concerts and travel, and I want to make one too now.  “I’ve made the intention of living day to day, not worrying and not stressing and not harping on the things I have no control over,” she says.  I left this conference with a clear sense of what I can control, too — selecting and trusting a top NET care team, seeking out high quality and new information about my disease, and living with purpose and intentionality. Please share your feedback about the conference by taking this survey . To find out more about upcoming in-person and virtual Neuroendocrine Cancer Foundation events, visit our Upcoming Events & Meetings page . THANKS TO OUR SPONSORS

More about PRRT Peptide Receptor Radionuclide Therapy Original post April 24, 2019; Updated 12/17/2022 In our previous article, “ These Four Letters: PRRT, An Overview of PRRT ”, we gave an overview on PRRT including a discussion of theranostics and the importance of the Ga-68 scan in determining if a patient is a candidate for PRRT. This article will answer more frequently asked questions and provide links to helpful videos, articles, and patient resources. What is the difference between PRRT, Lu-177 and Lutathera®? NET patients in the United States may see these terms used interchangeably: PRRT Lutetium 177 Dotatate Lu-177 Lutathera® (the brand name for the FDA approved drug) SSTR Therapy PRRT is a class of radioactive drugs that uses a targeting molecule bound to a radiation component. There are other types of PRRT currently being developed that may be available only under clinical trials or in Europe. Lutetium-177 (Lu-177) is a radioisotope used for targeted therapy. Lu177 is linked to a protein, forming Lutetium-177 dotatate, to target the same receptors as Ga-68, Cu-68, lanreotide, and octreotide. Lutathera® is the brand name of radioactive drug or radiopharmaceutical, lutetium-177 (Lu-177) dotatate that is manufactured by Advanced Accelerator Applications (AAA) . Lutathera® is the first in the class of PRRT drugs currently approved by the FDA and available for use in the United States. SSTR therapy is another term for PRRT since it targets the somatostatin receptors. *Note: There are many other “keys” in development, which means hope for future options in NET treatment. Who might be a candidate for PRRT? According to the FDA Approval found here, PRRT is indicated for the treatment of somatostatin receptor-positive gastroenteropancreatic neuroendocrine tumors (GEP-NETs), including foregut, midgut, and hindgut neuroendocrine tumors in adults. Adults (who are not pregnant) with gastorenteropancreatic neuroendocrine tumors. This includes NET in the pancreas or GI tract (stomach, intestines, colon, rectum, appendix). You must have a recent somatostatin imaging scan (i.e. gallium-68 PET/CT or NETSPOT®, gallium-68 PET/MRI, Cu-64 DOTATATE scan or (DETECTNET® ) , or octreotide scan) showing that there are somatostatin receptors present on your tumor cells. Those who have advanced and/or progressive neuroendocrine tumors despite somatostatin analogues and are not a candidate for surgery. Those whose symptoms have not responded to other therapies. Where is PRRT offered? In 2019, the Carcinoid Cancer Foundation launched a website dedicated to providing information about PRRT and the Gallium-68 PET/CT scan. This site also includes an interactive map to locate facilities where PRRT and/or the Gallium-68 PET/CT scan are being offered. Visit CCF’s website here . How can I learn more about PRRT? WATCH: Watch the LACNETS PRRT videos here READ: 2019 NANETS/SNMMI Procedure Standard for Somatostatin Receptor Based Peptide Receptor Radionuclide Therapy with 177Lu-Dotatate 2020 NANETS/SNMMI Consensus Statement on Patient Selection and Appropriate Use of 177Lu-DOTATATE Peptide Receptor Radionuclide Therapy First PRRT Approved by U.S. Food and Drug Administration, NETRF What is Peptide Receptor Radionuclide Therapy (PRRT)? NETRF Improving PRRT , NETRF SNMMI PRRT fact sheet PRRT is now in the NCCN Guidelines for Patients: Neuroendocrine Tumors and the NCCN Clinical Practice Guidelines in Oncology (for healthcare professionals): Neuroendocrine and Adrenal Tumors . Check out these helpful patient education materials from Advanced Accelerator Applications: “ Your Guide to NETSPOT® ”addresses frequently asked questions and important safety information about the Ga-68 scan. ​The patient brochure: “ Your Guide to Lutathera Treatment ” answers many frequently asked questions including how Lutathera® is given, what to expect following treatment, and important safety information. It also provides information about AAA PatientCONNECT, a patient assistance program. ​The “ Quick Look at Lutathera®” brochure provides some basic information as well as important safety information. ​ AAA PatientCONNECT is a patient support program including financial assistance and reimbursement support services. ​“ A Journey of Hope ,” describes the journeys of five NET patients and their experiences with PRRT. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

Surgery for NETs Resources EDUCATIONAL WEBINARS "What Matters About Liver Surgery" with Dr. Hallet Watch here "Evolving Management of NET Liver Metastases" with Dr. Singh Watch here "Understanding Surgery for Liver NETs" with Dr. Clarke Watch here "Understanding Carcinoid Crisis" with Dr. Hallet Watch here "A Conversation with Three NET Surgeons" with Dr. Clarke, Dr. Gangi and Dr. Anaya Watch 'A Conversation with Three NET Surgeons' featuring Dr. Callisia Clarke, Dr. Alexandra Gangi and Dr. Daniel Anaya Saenz. This presentation is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. Watch here "NET Surgery: Making Decisions & Preparing for Surgery" with Callisia Clarke, MD Is surgery the right treatment option for you? Dr. Callisia Clarke joined us for our annual patient conference to address surgery for NETs including decision-making & preparing for surgery. Watch here "Patient Story: How to Prepare for Surgery" NET patient Julie’s “show and tell” of tips, tricks, and specific items she found useful during her hospital stay and recovery at home. Click here for a list of the items Julie mentioned in this video. Watch here Click here for our full surgery video playlist. PODCAST EPISODE 27: WHAT TO KNOW ABOUT NEUROENDOCRINE TUMOR LIVER METASTASES What do you call NETs in the liver? How often do NETs spread and what causes NETs to spread? How do you determine if surgery is an option? Dr Xavier Keutgen from University of Chicago brings clarity to NET tumors found in the liver and describes how surgery fits in with other treatments for metastatic NETs. LISTEN NOW SURGERY FOR NETS To cut or not to cut? A crossroad many neuroendocrine cancer patients are faced with along their journey. NET surgeon Dr. Gagandeep Singh of City of Hope answers the top 10 surgery questions for NETs. LISTEN NOW KEY CONSIDERATIONS FOR NET SURGERY How do surgeons decide the type, extent, and approach of NET surgery? NET surgeon Dr. Alexandra Gangi of Cedars-Sinai answers 10 common questions about what to expect before, during, and after NET surgery. Gain insight on preparing for surgery and what is important for your surgeon to know about your recovery goals. Dr. Gangi’s comprehensive approach illustrates why surgeons are an integral part of your NET medical team. LISTEN NOW ADDITIONAL SURGERY RESOURCES NET Quiz - Test Your Knowledge! How much do you really know about surgery and international radiology for NETs? Test your NET knowledge by taking this six question quiz based off of the NETWise podcast episode #3: “Surgery and Interventional Radiology for NETs.” Take the Quiz Blog Post - Practical Tips for Patients Preparing for Surgery Many NET patients undergo surgery as part of their treatment course. While their medical team might have specific preparation instructions, patients often wonder about practical concerns like how to plan, what to pack, and how to prepare the home... Read the Blogpost

<< Back Additional Resources WATCH "Understanding Alpha & the Evolving PRRT Landscape" with Dr. Udhayvir Singh Grewal Download Presentation Slides >>> "2024 Updates on Clinical Trials in Neuroendocrine Tumors" with Dr. Heloisa Soares - April 25, 2024 - LACNETS Patient Educational Event "Navigating Clinical Trials: Expectations vs Realities" with Taymeyah Al-Toubah, MPH - August 2023 LACNETS Patient Educational Event "The Latest in NET Clinical Trials" - 2023 LACNETS Patient Education Conference "Clinical Trials: Why, What & How" - 2023 LACNETS Patient Education Conference "Patient Story & Understanding Clinical Trial Terminology" - 2020 LACNETS Symposium "Update on NET Clinical Trials" with Dr. Heloisa Soares - March 2023 LACNETS Educational Event "How Clinical Practice Has Been Changed by Clinical Trials in the Last 10 Years" by Dr. Enrique Grande (Credit: INCA) In this 2022 recording for INCA, Dr. Enrique Grande, MD, PhD, MSc, gives a snapshot of NET research, how clinical trials inform clinical practice, and highlights key trials. "Practice Changing Research in NETS" by Prof. Jonathan R. Strosberg, President of NANETS (Credit: INCA) In this 2022 recording for INCA, Prof. Strosberg discusses the current NET clinical trials. "What is the Role of Patients in Trial Design and Efficacy" by Prof. Michael Michael (Credit: INCA) In this 2022 recording for INCA, Prof. Michael discusses the gaps in current NET research and the role of patients in clinical trials design. LISTEN Visit the podcast episode page for more resources >>> Visit the podcast episode page for more resources >>> READ "Why Participate in Clinical Trials?" Clinical Trials Glossary "How to Prepare for Clinical Trials" Info Sheet Glossary: Common Terms in Clinical Trials Navigating Clinical Trials: Expectations vs Realities - Slides from August 19, 2023 LACNETS Educational Event

Clinical Trials Guide Clinical Trials Guide LATEST ON CLINICAL TRIALS Browse by Trial: ACTION-1: Alpha PRRT with Ac-225 in GEP-NETs ALPHAMEDIX: Alpha PRRT with Pb-212 DOTAMTATE in NETs Alpha PRRT with Ac-225 + Standard of Care in SSTR+ SCLC Alpha PRRT with Pb-212 VMT Antibody Drug Conjugate ADCT-701 in Neuroendocrine Tumors and Carcinomas Belzutifan-MK-6482 in PNET + PPGL + VHL CABINET: Cabozantinib in Advanced pNET and Carcinoid Tumors CDK4/6 Abemaciclib GEP-NETS CHM-2101 CAR-T cell for GI Cancers ComPareNET: Lu-177 DOTATATE vs CAPTEM in Advanced pNETs COMPOSE: PRRT with Lu-177 EDOTREOTIDE versus “Standard of Care” in Well-Differentiated Aggressive G2 & G3 GEP-NETS DAREON™- 5: DLL-3 BiTE for Neuroendocrine Cancers DAREON™-7: DLL-3 for Advanced Neuroendocrine Cancers DAREON™-9: DLL-3 BiTE + Topotecan in Small Cell Lung Cancer (SCLC) IL13Rα2 CAR T Cell Study for Solid Tumor Cancers LAMPARA: LAnreotide in Metastatic Pheochromocytoma/PARAganglioma Lu-177 + Carboplatin, Etoposide, and Atezolizumab in SCLC Lu-177 DOTATATE + Cabozantanib in NETs Lu-177 DOTATATE vs Everolimus in Lung NETs Lu-177 DOTATATE + M3814 (Peposertib) in GEP-NETs Lu-177 DOTATATE + Olaparib in GEP-NETs Lu-177 DOTATATE + Sunitinib in PNETs Lu-177 DOTATATE + Triapine in GEP-NETs Nab-sirolimus in Patients With Well-differentiated Neuroendocrine Tumors (NETs) Tissue Procurement and Natural History Study of Neuroendocrine Neoplasms (NENs) Including Adrenocortical Carcinoma (ACC) NET RETREAT: Retreatment with 177Lu-DOTATATE vs Everolimus in Metastatic Midgut NET NETTER-P: Lutathera in Adolescent Patients (12-17) with GEP-NETs and PPGLs Olaparib + Usual Chemotherapy (Temozolomide) in PPGL Paltusotine in Carcinoid Syndrome SORENTO™: Subcutaneous Octreotide for GEP-NETs (Cam2029) Survivin Long Peptide Vaccine (SurVaxM) in Metastatic NETs SVV-001 + Ipi-Nivo in Patients With Poorly Differentiated (NEC) or Well-Differentiated High-Grade (NET) SWOG S2104: Adjuvant CAPTEM for High Risk pNET SWOG S2012: Immunotherapy (Atezolizumab) + Standard Platinum Chemotherapy for NEC (STELLAR-311) Zanzalintinib Versus Everolimus in pNET and epNET with Locally Advanced or Metastatic Neuroendocrine Tumors Systemic VSV-IFNβ-NIS and Pembrolizumab in Refractory NSCLC and NEC By type of disease or treatment Browse by trial Browse by Type of Disease or Treatment: Pancreatic NET (PNET) Click Here Lung/Bronchial NETs Click Here G3 Neuroendocrine Neoplasms (NEN) or High Grade Click Here Immunotherapy Click Here NIH/NCI Natural History Study for Neuroendocrine Neoplasms Click Here Additional Resources Click Here Gastrointestinal (GI) NETs Click Here Pheochromocytoma/ Paraganglioma Click Here Peptide Receptor Radionuclide Therapy (PRRT) Click Here Somatostatin Analogue (SSA) Click Here Other Click Here UNDERSTANDING CLINICAL TRIALS Finding and learning more about relevant neuroendocrine cancer clinical trials may feel overwhelming. While comprehensive databases are available to search for trials, it may be difficult to understand whether a trial is right for you. Our goal is to offer a resource with key, open clinical trials for those with neuroendocrine cancer (aka, neuroendocrine neoplasm or NEN, including neuroendocrine tumor or NET and neuroendocrine carcinoma or NEC). We hope this information will help you better understand clinical trials and empower you to discuss them with your medical team. You may browse the Clinical Trials Guide in the following ways: Browse by selecting a type of disease or treatment. For example, if you are interested in open trials for pancreatic neuroendocrine tumor (PNET), click on the “PNET” image below. If you are interested in exploring peptide receptor radionuclide therapy (PRRT) trials, click on the “PRRT” image below. Browse by the trial using the table of contents. Click on individual trials to learn more information. Use the Ancora.ai clinical trial finder by entering your location and specifics about your tumor to find appropriate clinical trials. Then, browse this clinical trial guide to learn more about the suggested trials. When exploring the Clinical Trials Guide, you will find a description of each trial and contact information. Many also include a video of a NET expert describing the trial. The videos explain the study and who is eligible to participate. You can consider clinical trials at any time during your NET journey. Options range from first-line treatments for those newly diagnosed to novel treatments for those who have already had multiple treatments. For more information on how your involvement may benefit you and the NET community, read Why Participate in Clinical Trials . Download "Glossary of Common Terms in Clinical Trials" >>> Download "Clinical Trials: How to Prepare" >>> Ancora Ancora.ai Ancora.ai is a neuroendocrine tumor clinical trial finder for patients and physicians developed by Ancora.ai and NorCalCarciNET. Ancora allows you to do a personalized search, filter and export results, and if interested, Ancora's patient team can help connect you to a trial site to begin the evaluation process. It's free and easy to use. Click here to access Ancora.ai >> DISCLAIMER: This information is for educational purposes only. The Neuroendocrine Cancer Foundation encourages you to discuss your individual care and treatment options with your medical team. The Neuroendocrine Cancer Foundation does not endorse any particular trial or treatment. This is not a complete list of available NET trials nor is it intended to be. For comprehensive information about available clinical trials, go to ClinicalTrials.Gov.