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Dear Neuroendocrine Cancer Community, Dr. Richard R.P. Warner For six decades years, the Carcinoid Cancer Foundation (CCF) has been a pillar of education, advocacy, and support for the neuroendocrine tumor (NET) community. Founded by the late Dr. Richard R.P. Warner , CCF helped shape the modern landscape of NET patient education and touched countless lives. The Neuroendocrine Cancer Foundation (NCF) now enters a new chapter as we carry forward this legacy. We have been entrusted with continuing programs and resources that have supported patients and families for decades. Serving as the successor to this 60-year foundation is both an honor and a responsibility we do not take lightly. We are grateful for the trust placed in NCF to steward this work and build upon Dr. Warner’s vision. That trust reflects a shared commitment to ensuring people affected by neuroendocrine cancer have continued access to reliable information, compassionate support, and meaningful connection. Our mission remains clear: no one facing neuroendocrine cancer should feel alone. We will continue providing trusted education, patient support, and community engagement while investing in initiatives that advance care, awareness, and quality of life. How We Will Continue This Important Work Over the past two years, NCF has worked alongside CCF to ensure continuity of support through the patient support line, the Luncheon with the Experts (LWTE)  webinar series, Stories of Hope , and other educational initiatives. These programs will continue under NCF. Neuroendocrine Cancer Provider Directory Building on CCF’s “Find a Doctor” database, NCF is partnering with the Neuroendocrine Tumor Research Foundation (NETRF) to combine two specialist databases into a single, comprehensive Neuroendocrine Cancer Provider Directory. This unified, up-to-date resource will help patients and caregivers connect with experienced specialists and is planned for launch later this year. LWTE Webinars, Stories of Hope, and Support Line These cornerstone programs will continue under the NCF umbrella. We invite you to stay connected and engaged with our community: Facebook Instagram YouTube X (formerly Twitter) LinkedIn We extend our sincere gratitude to CCF for its decades of service and to CCF's CEO Keith Warner, and COO Grace Goldstein (retired in 2022), for ensuring Dr. Richard Warner’s legacy continues. We also thank you—the neuroendocrine cancer community—for your continued trust as we carry this work forward. With respect and gratitude, NCF Team Other Resources Learn more about the Neuroendocrine Cancer Foundation Sign up for our upcoming patient programs

2025 was a year of meaningful progress in neuroendocrine cancer. New treatments, new clinical trial data, and expanded research efforts continue to improve care for people living with diverse neuroendocrine cancers including neuroendocrine tumor (NET), neuroendocrine carcinoma (NEC), and pheochromocytoma and paraganglioma (PPGL). Below is an overview of some of the most important developments of the year. Year-in-Review: NET and NEC Updates Download the transcript of this video >>> Dr. Udhay Grewal summarizes major advances from conferences and clinical trials across the NET and NEC landscape. Key Advances Continued progress in alpha PRRT, including completion of the ACTION 1 Actinium 225 trial. FDA approval of belzutifan for pheochromocytoma and paraganglioma. Promising results from DLL3 targeted therapies for high grade NEC. Ongoing development of tri-specific antibodies and DLL3 radioligand therapies. New Developments in Neuroendocrine Tumors (NETs) Download the transcript of this video >>> 2025 brought several promising updates for patients with well-differentiated NETs. Dr. Aman Chauhan highlights the following: Key Advances Paltusotine : A once-daily pill being studied for carcinoid syndrome. Alpha PRRT : Early activity seen with Lead-212 and Actinium-225 therapies. Combination PRRT : Triapine plus Lutetium-177 shows encouraging safety and early effectiveness. New targeted therapy : Zanzalintinib is being evaluated as a next-generation VEGF inhibitor. New Developments in Neuroendocrine Carcinoma (NEC) Download the transcript of this video >>> High-grade NEC has historically had fewer treatment options, but 2025 delivered real momentum. Dr. Aman Chauhan discusses the following: Key Advances DLL3 T-cell engagers:  Including tarlatamab and the investigational drug obrixtamig. Oncolytic virus therapy:  Seneca Valley Virus combined with immunotherapy is being studied. DLL3 radiopharmaceuticals:  New therapies under development that may bring theranostics to NEC. COMPETE Trial Results Presented at ENETS 2025 Download the transcript of this video >>> At the ENETS Congress in March 2025, NANETS President Emeritus Dr. Halfdanarson explained key results from the COMPETE phase 3 trial comparing PRRT Lu 177 DOTATOC with everolimus. He also discusses what it means for patients. Key Takeaways PRRT was more effective than everolimus in delaying tumor growth. Side effects were expected and consistent with previously known PRRT safety. Quality-of-life data are pending, but past studies suggest favorable outcomes. Everolimus remains an important option. The goal is ensuring patients receive all effective treatments over time. 2025 Highlights and Future Directions from NANETS President Dr. Jennifer Chan Download the transcript of this video >>> At the September 2025 INCA Summit in Sofia, Bulgaria, NANETS President, Dr. Jennifer Chan reflected on the progress of the past year and shared what she is most excited about for the future: Key Highlights Cabozantinib approval  Dr. Chan discussed the impact of cabozantinib’s approval for both pancreatic and extra pancreatic NETs and described how this expands treatment access for patients worldwide. Belzutifan approval for PPGL   She highlighted the approval of belzutifan as a major step forward for people with pheochromocytoma and paraganglioma. Broader research momentum  Growth in the number of physicians, scientists, and centers engaged in NET and NEC research has transformed the field. Upcoming trial readouts  Dr. Chan emphasized the importance of recently completed studies, including COMPETE, and expressed enthusiasm for ongoing alpha PRRT studies and other next generation therapies. Cabozantinib Results Highlighted at ESMO 2025 Download the transcript of this video >>> In October 2025, new subgroup data on lung and thymic NET from the CABINET study were presented at ESMO. This followed the FDA approval of cabozantinib in March 2025. Dr. Aman Chauhan explains what this means for patients: Key Takeaways Strong benefit seen in lung NETs, including typical and atypical carcinoids. Activity observed in higher grade well-differentiated NETs. An important treatment option for people who are not eligible for PRRT or somatostatin analogs. NANETS 2025: Top 12 Highlights Our Neuroendocrine Cancer Foundation podcast with Dr. Will Pegna offers an easy-to-understand review of the most important updates from the 2025 NANETS symposium. Visit the podcast page for more information and resources >>> Bridging Inequities in Neuroendocrine Cancer Care Download the transcript of this video >>> A meaningful highlight of 2025 was the growing recognition of inequities in neuroendocrine cancer care and the expanding commitment across the field to address them. Dr. Grewal, who was honored with the inaugural NANETS Diversity, Equity, and Inclusion Award, shared why this work is essential and how patients and advocates can help drive meaningful change. Key Insights Many patients seen in everyday practice do not resemble those typically enrolled in clinical trials. Racial and ethnic minority groups, as well as rural patients, often face major barriers to receiving standard of care treatment and participating in research. Recent studies highlight disparities in clinical trial enrollment and end-of-life care, including lower access to palliative care among Black patients. Researchers are using NETPRO and other datasets to better understand gaps and inform future solutions. Why This Matters Dr. Udhay Grewal emphasized that progress is meaningful only when it reaches everyone who needs it. As new therapies emerge, ensuring equitable access is essential. How Patients and Caregivers Can Help Get involved in advocacy and awareness efforts. Share your experiences to help shape research and improve care. Partner with organizations like NCF, NANETS, and ASCO to support equity-focused initiatives. Looking Ahead to 2026 We look forward to the launch of new clinical trials and the results of several important ongoing studies, including those evaluating combination PRRT strategies, multiple alpha PRRT agents, DLL3-targeted therapies, and new oral treatment options. Progress is accelerating, and as research expands, so do the treatment options and sources of hope available to patients. As our speakers emphasized, meaningful advances are happening. There is real reason to be hopeful. And together, we can continue to move the field forward.  THANKS TO OUR SPONSORS

"I was diagnosed with neuroendocrine tumors in 2022. I had never heard of this disease before, and I lived in a state without a single NET specialist. I was scared and unsure of what to do next. I am so thankful that I quickly reached out to the Neuroendocrine Cancer Foundation (NCF). One of the first NCF emails I received said, ' You are not alone. We are here to help.'  In the midst of uncertainty and fear, they offered hope . From the very beginning, NCF connected me with someone who understood this disease in a way that my friends and family simply could not. That early support helped steady me when everything felt confusing. As time went on, those first conversations grew into friendships that have stayed with me. I still look back and cannot believe how much this community has meant to me. This disease, which felt so isolating at first, has offered me one of the richest experiences of community  I’ve ever encountered. One of the most important things NCF has given me is an understanding of my disease and the confidence to take part in my own care. Those early months were filled with new tests, unfamiliar terms, and decisions that felt incredibly heavy. The education I received helped me walk into appointments prepared instead of afraid. It changed how I spoke with my doctors and how I saw myself in this process. Those early days were so full of confusion, but now I am equipped with knowledge  thanks to the countless educational resources NCF provides. Because of NCF, I no longer feel powerless in the face of this disease. I can advocate for myself and for others. I have shared my story, participated in research, been proactive in my care, and supported newly diagnosed patients with a deep sense of purpose and empowerment. None of this happens by accident. It exists because  people like me—and like you— choose to support this organization because we believe that patients deserve guidance, clarity, encouragement, and connection. Every resource I used and every moment of understanding I gained came from someone who cared enough to give. Your support is transformative in the lives of neuroendocrine cancer patients who benefit from the wide range of programs and resources NCF provides to support people living well with neuroendocrine cancer." "Your generosity makes all of this possible. In 2026, an estimated 12,000 to 23,000 people in the United States will be diagnosed with neuroendocrine cancer. You help ensure that the next person who hears a diagnosis of "neuroendocrine tumor" does not have to navigate this disease alone.  Thank you for making a difference in my life and in the lives of so many others." With Deep Gratitude,  Dusty Hurley  Donations (Up to $50,000) will be matched dollar for dollar until Dec 31, 2025. Dusty Hurley is wife to a charming Irishman; mom to two loving, fun, and bright elementary-aged daughters; and the favorite human of two fluffy, playful dogs. Her professional background includes ministry, nonprofit and government leadership, and grant writing. She enjoys spending time with friends and family…bonus points if it can be around a campfire or traveling to somewhere new. Diagnosed with a pancreatic neuroendocrine tumor (pNET) in 2022, Dusty brings faith, optimism, and determination to her roles as both patient and advocate. She’s passionate about helping others navigate NET with clarity, courage, and hope. Watch Dusty on a recent patient panel: "Living With NET: A Patient Perspective."  THANKS TO OUR SPONSORS

The NETTER-2 phase 3 trial results show Lutathera® may be offered as first-line treatment for newly diagnosed grade 2 and 3 advanced gastroenteropancreatic neuroendocrine tumors (GEP-NETs). When compared to long-acting octreotide, Lutathera® reduced the risk of disease progression or death by 72% in patients with somatostatin receptors.  “These positive results for Lutathera are practice-changing and offer new first-line treatment data for patients who have a significant unmet need. This study confirms the clinical benefit of first-line radioligand therapy (RLT) for newly diagnosed patients living with these types of advanced GEP-NETs. These findings should instill confidence among physicians in using Lutathera as a first-line treatment for patients with this life-threatening type of cancer.” — Dr. Simron Singh, NET expert, Sunnybrook Health Sciences Centre, Ontario, Canada.  Novartis Lutathera® significantly reduced risk of disease progression or death by 72% as first-line treatment for patients with advanced gastroenteropancreatic neuroendocrine tumors In the Phase III NETTER-2 trial, Lutathera plus octreotide LAR significantly extended median Progression Free Survival (PFS) to 22.8 months vs. 8.5 months with high-dose octreotide LAR in patients with newly diagnosed grade 2 and 3 advanced gastroenteropancreatic neuroendocrine tumors (GEP-NETs).  NETTER-2 is the first and only positive Phase III trial for a radioligand therapy (RLT) or PRRT in the first-line setting, demonstrating the potential of RLTs in earlier treatment lines. Novartis is investigating a broad portfolio of RLTs or PRRT in advanced cancers, in addition to GEP-NETs, including lung, prostate, breast, colon, glioblastoma and pancreatic cancers to continue reimagining medicine for patients. Read the full Novartis Press Release: https://www.novartis.com/news/media-releases/novartis-lutathera-significantly-reduced-risk-disease-progression-or-death-72-first-line-treatment-patients-advanced-gastroenteropancreatic-neuroendocrine-tumors

Every year on November 10th , people around the world unite to raise awareness, advance scientific progress, and amplify the voices of those affected by neuroendocrine cancer. This year, approximately 75 neuroendocrine cancer patients, loved ones, clinicians, and industry partners  gathered in Miami, Florida  for the Neuroendocrine Cancer Foundation World NET Cancer Day Symposium  on November 9th . Together, we shared information, connection, and hope—reminding one another that we are not alone and that empowerment begins with community. November 9th also marks the birthday of our founder and Executive Director Emeritus, Giovanna Joyce Imbesi . Giovanna often said she felt a special connection to World NET Cancer Day because her birthday came just before it. Nearly six years after her passing, we continue to honor her vision and legacy—the community she built, filled with compassion, courage, and heart. Educational Highlights Q&A Session with NET experts at the 2025 NET Cancer Day Symposium This year’s Symposium featured nine exceptional speakers , covering topics across the spectrum of NET care—from clinical trials and surgery to advocacy and survivorship: Demystifying Clinical Trials  – Taymeyah Al-Toubah , MPH, CCRP FlaNET, Medical student Role of Surgery in NETs  – Jashodeep Datta , MD, Surgical Oncologist, Sylvester Comprehensive Cancer Center Liver-Directed Therapy  – Lindsay Thorton, MD, Interventional Radiologist; Sylvester Comprehensive Cancer Center Targeted Therapies & Chemotherapy  – Udhayvir Grewal , MD, Medical Oncologist Emory University PRRT for NETs  – Boris Naraev , MD, PhD, FACP, Medical Oncologist, Tampa General Hospital Cancer Institute Managing Side Effects of Systemic Therapy  – Jason Starr , DO, Hematologist/Oncologist, Mayo Clinic Jacksonville The Latest in Managing Carcinoid Syndrome  – Jason Starr , DO, Hematologist/Oncologist, Mayo Clinic Jacksonville Role of Advocacy in Advancing Care for Neuroendocrine Cancer  – Estelamari Rodriguez, MD, MPH, Thoracic Oncologist, Sylvester Cancer Center The Future of NETs: Emerging Therapies and Clinical Trials  – Aman Chauhan, MD, Medical Oncologist, Sylvester Comprehensive Cancer Center Nutrition & Fitness in Cancer  – Tracy Crane, PhD, RDN, Sylvester Cancer Center Celebrating Community & Inspiration The NCF Team with Dusty Hurley, a NET patient & advocate and the recipient of the 2025 Above and Beyond Award. This year’s Above and Beyond Award  recognized Dusty Hurley , a pancreatic NET patient, devoted wife, and mother who has gone above and beyond to support and empower others in the NET community—sharing her story, advocating for awareness, and inspiring hope through her compassion and courage. Attendees were also treated to a 15-minute sneak peek  of “Zeal for Life,”  an upcoming documentary by storyteller Rain Bennett  that beautifully captures the power, resilience, and heart of the NET community. His work highlights how connection, advocacy, and shared purpose can transform lives and inspire change. We also continued to honor Giovanna Joyce Imbesi’s enduring legacy through music, which she believed had the power to connect and heal. Each year, we incorporate music into the Symposium as a tribute to her spirit and the harmony she brought to our community. This year, musician and composer Aramís Lorié  shared both his patient journey and his artistry during the program, and attendees enjoyed live music and mocktails at the reception—a joyful close to a meaningful day. Words of Hope from Our Speakers “The hope is there is a cure… and cure means different things to different people—it may mean living well with manageable symptoms or having no evidence of disease. Our hope is that someday we will achieve that.” — Dr. Udhayvir Grewal “Hope is definitely alive. Hope is there because science is moving faster than it has in 20 years. To move the field forward, we have to participate in and invest in clinical trials.” — Dr. Estelamari Rodriguez Keep the Momentum Going World NET Cancer Day reminds us that our voices matter—individually and together. Let’s keep raising awareness, supporting one another, and making a difference—not just today, but every day. THANKS TO OUR SPONSORS

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

On May 17th, nearly 70 neuroendocrine cancer patients, their loved ones, clinicians, and industry representatives gathered at the Sandbourne hotel in Santa Monica for an evening of learning, connection, and community. Attendees came from across North America and the greater Los Angeles area, united by a shared commitment to understanding and navigating life with neuroendocrine tumor (NET). The evening opened with a moving personal story—one patient’s account of learning to live in “The Messy Middle.” Her reflections on embracing uncertainty and finding perspective and peace resonated powerfully with the audience, setting a thoughtful and hopeful tone. We then heard from four distinguished NET experts who presented on key areas of care: liver-directed therapies, systemic treatments, PRRT (Peptide Receptor Radionuclide Therapy), and clinical trials. Their presentations were both informative and accessible, helping patients and caregivers better understand current treatment options and the direction of ongoing research. Cohosts Dr. Alexandra Gangi and Dr. Andrew Hendifar moderated two valuable Q&A sessions, where a panel of seven NET specialists answered around 40 questions from those attending. The panelists’ openness, insight, and compassion added tremendous value for those seeking clarity and guidance in their care journey. But education was only part of what made the evening special. The event also offered something rare and vital: the opportunity to connect with others who truly understand the challenges of living with a chronic disease. Conversations flowed freely and stories were exchanged. There was a shared sense of solidarity and strength. Many attendees shared how meaningful it was to be surrounded by people who “get it”—leaving them feeling more inspired, empowered, and less alone. We extend our heartfelt appreciation to NANETS (North American Neuroendocrine Tumor Society), whose Regional Educational Event for the medical community, earlier that day, laid the foundation for our gathering. Their expert speakers graciously extended their long Saturday to participate in our session for patients, and we’re grateful for their commitment to the Neuroendocrine Cancer community as a whole. If you haven’t already, we encourage you to share   NANETS.net  with your medical team—so they can learn more about the intricacies of neuroendocrine cancer and the latest in NET research and care. As the evening concluded, one message stood out: we move forward with hope. Hope grounded in community, strengthened by knowledge, and fueled by the ongoing efforts of the brilliant, compassionate minds working toward better outcomes for all affected by neuroendocrine cancer. Thank you to everyone who joined us in Santa Monica. Again a very special thanks to NANETS and our hosts and moderators, Dr. Alexandra Gangi and Dr. Andrew Hendifar from Cedars-Sinai Medical Center and our Supporters who made this event possible.  We are grateful for our 9 wonderful speakers: Amoret, NET patient Gabriel Lipshutz, MD, Interventional Radiologist, Cedars-Sinai J. Randolph Hecht, MD, UCLA  Callisia Clarke, MD, Chief of MCW Surgery, Medical College of Wisconsin (Milwaukee Wisconsin) Julie Hallet, MD, MSc., FRCSC, Surgical Oncologist, Sunnybrook Health Sciences Center (Toronto, Canada) Thorvardur Halfdanarson, MD, Medical Oncologist, Mayo Clinic (Rochester, Minnesota)  Heloisa Soares, MD, Huntsman Cancer Institute (Salt Lake City, Utah) Linda Gardner, MSN, RN, VA-BC, UCLA The slides from the speaker presentation can be viewed here: Liver-Directed Therapy: Understanding Minimally Invasive Options to Treat Liver Tumors - Gabriel Lipshutz, MD, Interventional Radiologist, Cedars-Sinai Systemic Therapy for NETs: Medical Options for Metastatic Tumors - J. Randolph Hecht, MD, UCLA  PRRT: Current & New Trends - Thorvardur Halfdanarson, MD, Medical Oncologist, Mayo Clinic Clinical Trials: The Latest & Greatest - Heloisa Soares, MD, Huntsman Cancer Institute To find out more about upcoming in-person and virtual Neuroendocrine Cancer Foundation events, visit our Upcoming Events & Meetings page . THANKS TO OUR SPONSORS

On Saturday, March 29th, 2025, the Neuroendocrine Cancer Foundation held a Regional Neuroendocrine Patient Educational Event in Tucson, Arizona. Seventy-five members of the Neuroendocrine Cancer community, including patients, caregivers, expert speakers and advocacy representatives, gathered for an afternoon dedicated to learning, connection and hope. The event featured an inspiring story from someone living with Neuroendocrine Tumors (NET) and seven educational presentations covering key topics, including surgery, liver-directed therapy, systemic therapy, PRRT, nursing perspectives, and clinical trials. These sessions were followed by a 50-minute Q&A with a distinguished panel of NET experts, allowing attendees to ask questions and gain valuable insights. Beyond the presentations, the event provided an incredible opportunity for NET patients and caregivers to connect with others who truly understand their journey. We heard from many who felt inspired, empowered, and in great company.   The event highlighted the importance of community, knowledge, and the collective efforts of those dedicated to improving neuroendocrine cancer care and outcomes.  A special thank you to NANETS, who held their Regional Educational Event, for inviting us to share their conference space and expert speakers. They presented comprehensive information about neuroendocrine cancer to medical professionals. Be sure to share NANETS.net  with your doctors so they have an opportunity to learn more about the intricacies of NET.    The message of the day was clear: that we continue to move forward with hope, knowing that many brilliant minds are working diligently and collaboratively for those affected by Neuroendocrine Cancer.  A special thanks to our host and co-moderator, Dr. Junaid Arshad, and the UACC Team. Also, thanks to Dr. Aman Chauhan and Dr. Jaydira Del Rivero, who joined the Q&A panel. We are grateful for our 8 wonderful speakers: Kimberly, NET patient Bassam Sonbol, MD, Medical Oncologist; Mayo Clinic Phoenix Gagandeep Singh, MD, Surgical Oncologist; City of Hope Phoenix Gregory Woodhead, MD, PhD, Interventional Radiologist, University of Arizona Cancer Center Heloisa Soares, MD, PhD, Medical Oncologist; Huntsman Cancer Institute Holly Thompson, MD, MPH, Nuclear Medicine; University of Arizona Cancer Center  Linda Moe, RN, University of Arizona Cancer Center Pamela Kunz, MD, Medical Oncologist; Yale Cancer Center And two additional guest panelists: Aman Chauhan, MD, Medical Oncologist, Sylvester Cancer Center, University of Miami Jaydira Del Rivero, MD, Medical Oncologist and Endocrinologist, National Cancer Institute, National Institute of Health The slides from the speaker presentation can be viewed here: NETs 101: NET Terms & Concepts You Need to Know - Dr. Bassam Sonbol Surgery for NETs: To Cut or Not to Cut? - Dr. Gagandeep Singh Liver-Directed Therapy: Killing Liver Tumors without a Big Scar - Dr. Gregory Woodhead Systemic Therapy for NETs: Treatment Options for Metastatic Tumors - Dr. Heloisa Soares PRRT: Current & New Trends - Dr. Holly Thompson Nursing Perspective on the Management of NETs - Linda Moe, RN Clinical Trials: The Latest & Greatest - Dr. Pamela Kunz Here are additional resources mentioned during the event: LACNETS 2024 Educational Event with Dr. Gagandeep Singh on the “Evolving Management of NET Liver Metastases NCF Surgery Resources NCF Liver-Directed Therapy Resources NCF Clinical Trials Guide including the Ancora.ai neuroendocrine tumor clinical trial finder   Tissue Procurement and Natural History Study of Neuroendocrine Neoplasms (NENs), Including Adrenocortical Carcinoma (ACC) To find out more about upcoming in-person and virtual Neuroendocrine Cancer Foundation events, visit our Upcoming Events & Meetings page . THANKS TO OUR SPONSORS

Update (March 26, 2025): A New Treatment Option has been FDA approved for those living with NET.  The U.S FDA approved Cabozantinib for patients 12 years and older with previously treated, advanced neuroendocrine tumors.  Cabozantinib is marketed as CABOMETYX by Exelixis, learn more here. Dr. Jennifer Chan from Dana Farber Cancer Institute announces the updated findings On Sept 16, 2024, LACNETS interviewed incoming NANETS president, Dr. Jennifer Chan from Dana Farber Cancer Institute following her presentation on the updated, results of the CABINET trial at the medical and scientific meeting,  ESMO (the European Society for Medical Oncology)  Congress 2024 in Barcelona, Spain. The presentation was titled “ Cabozantinib Versus Placebo for Advanced Neuroendocrine Tumors (NET) after Progression on Prior Therapy (CABINET Trial/Alliance A021602): Updated Results Including Progression Free-Survival (PFS) by Blinded Independent Central Review (BICR) and Subgroup Analyses.”   Last year, LACNETS interviewed Dr. Jennifer Chan at the ESMO Congress 2023 in Madrid, Spain when she first shared t he initial CABINET trial data that showed cabozantinib (CABOMETYX®) helped those with advanced pancreatic NET and extrapancreatic NET (NET outside the pancreas). The results suggested that cabozantinib may be an effective option to treat NET patients, even those who have already tried other therapies. Watch the 2023 interview here . Watch our latest interview on Sept 16, 2024 with Dr. Jennifer Chan at   ESMO (the European Society for Medical Oncology)  Congress 2024 in Barcelona, Spain. (Read the complete transcript below.) Cabozantinib is an oral tyrosine kinase inhibitor. The data shows that cabozantinib effectively slowed the progression of neuroendocrine tumors across various primary sites, including pancreatic, extra-pancreatic (NETs outside the pancreas including GI and lung origin). The trial included patients with well-differentiated neuroendocrine tumors of grades 1, 2, and 3. The updated data focused on blinded, independent central review scans, safety profiles, and subgroup analyses. Dr. Chan emphasized the potential for Cabozantinib to offer a new treatment option, providing hope for both clinicians and patients. Read more in latest NEJM article released Sept 16, 2024: Phase 3 Trial of Cabozantinib to Treat Advanced Neuroendocrine Tumors. Visit our Clinical Trials Guide for more information about the  CABINET Randomized, Double-Blinded Phase III Study of Cabozantinib Versus Placebo in Patients with Advanced NETs After Progression on Prior Therapy >> TRANSCRIPT Lisa Yen   00:00 I'm Lisa yen. I'm the LACNETS Director of Programs and Outreach, and I'm here with Dr Jennifer Chan, here in Barcelona, Spain, at ESMO 2024. Dr Chan is a NET expert, medical oncologist from Dana Farber Cancer Institute in Boston, and the incoming NANETS president. Dr Chan, just discussed some exciting trial and so Dr Chan, I'd love to hear from you what you shared today at ESMO 2024.   Dr. Jennifer Chan   00:29 Thanks for having me with you. We presented the updated results of the CABINET trial. Last fall, we had focused on the initial results, and we were here now to present the final r esults. What we found was that Cabozantinib, which is an oral, what we call multi kinase inhibitor. These types of drugs, can work to inhibit the growth of blood vessels in the tumors and also can work to slow growth. But what we found was that Cabozantinib was able to effectively slow the progression, slow the growth of cancer. So we found this to be true for patients that had neuroendocrine tumors that may have started in a very wide range of primary sites. So we specifically looked at pancreas neuroendocrine tumors, and then also what we call extra-pancreatic neuroendocrine tumor. So this really includes neuroendocrine tumor tumors that start outside the pancreas. So most commonly it's in the GI tract. We also had about 20% of patients in the trial who had lung neuroendocrine tumor tumors. Some patients with unknown primary tumors. Some patients with kind of rarer sites, like the thymus and even other sites in addition to that. So it was, again, a very broad range of patients. And what we found was that in both the pancreas group as well as the extra-pancreas group, that this was an effective treatment. So it really, I think it can be considered an option, I hope, in the future, for a wide and a large number of patients.   Lisa Yen   00:42 Wow, a wide range of patients, including lung. That's really exciting since I know that that population sometimes feels a little left out because there's not a lot of options. Can you speak also to the different types of grades that it might be used for?   Dr. Jennifer Chan   02:15 Yeah. So all of these were what we call well-differentiated neuroendocrine tumors. But within well-differentiated, there's grade one, grade two, grade three. So grade one is the tumors that look under the microscope to be not quite as proliferative, not as much signal for growth. And then on the flip side is the high grade, the grade three, where there's more evidence of under the microscope proliferation. So we included all grades. Mostly, it was grade one and grade two. Grade two, probably of all the patients, was the highest category, but there also were patients with grade three disease, and as we looked at the data, we saw signals that cabozantinib should work even in all of the grades that we were including.   Lisa Yen   02:53 Yeah, so this trial closed last August, and you talked about this at ESMO last year in October in Madrid. So, why are we talking about it again? What is new and different that you're presenting and sharing with us?   Dr. Jennifer Chan   03:09 That's a great question. So we presented data that focused on what we call the primary endpoint. As we started the trial, we kind of had to find what we were going to be looking for in terms of how we measure growth and what kind of scans we were looking for. So this year, we were looking at a different set of scans, what we call these blinded, independent, central review scans, whereas at ESMO last year, we were looking at the scans that patients' doctors were looking at. So it was a second radiology set of images that we were looking at, the ones that when we designed the trial, we said, "these were going to be the primary ones to look at." So this was important for us to have the primary, what we call end point results. We also had more information about the safety and side effect profiles that patients were experiencing, and then some of these subgroup analyzes that I just talked about.   Lisa Yen   03:58 Yeah, I know you've dedicated quite a number of years, about a decade of your life to this trial and this work. What's important of all this data, what's it going to mean to patients?   Dr. Jennifer Chan   04:09 I think it means possibly new treatment option. I think again, that's what we started this trial to do, was to see if we could find a newer and a newer, effective treatment. So I think the data is quite compelling that this is potentially something that more patients might have as an option for the future. So it gives me a lot of hope as a clinician, that will be able to offer more treatment. And I hope also gives some hope to patients as well.   Lisa Yen   04:32 It gives me hope to as a caregiver. Thank you so much. And so what are what's your takeaway, or your hope for the future coming up?   Dr. Jennifer Chan   04:41 Yeah, I think we're still in the field, trying again to find even more treatments. We're trying to right now we are individualizing treatment. I think hopefully we also will have some studies that help us to understand how they compare, how these treatments compare to one another. And I think it's all just good in the long run to be able to have more options, to understand how to use these options. And I think it's, I guess the take home message also, as you hear about this, is to bring it back to your own oncologist. I think we want you to be able to understand the data and to understand, as you talk with your medical team about what that might mean for you.   Lisa Yen   05:15 Yeah, more hope. Deeper understanding and hopefully a better overall quality of life for all of us. Thank you so much for all you do. Thank you for joining us today.   Dr. Jennifer Chan   05:24 Thank you for having me.   This blog is for educational purposes only and does not constitute medical advice. It does not provide a medical professional’s opinion or advice, nor is it an endorsement of particular treatments. You are advised to seek appropriate licensed medical/professional help and discuss your individual care and treatment plan with your medical team. The content in this blogpost is the opinion of the author and the information is neither provided by nor endorsed by pharmaceutical companies. THANKS TO OUR SPONSORS

The Neuroendocrine Cancer Foundation (formerly LACNETS) attended the 2025 Annual European Neuroendocrine Tumor Society (ENETS) Conference, a 3-day medical and scientific meeting of presentations on ground-breaking research and late-breaking study results, in Krakow, Poland. We learned from experts from around the world and collaborated with global partners.  While many of the sessions focus on medical and scientific data, the value of patient advocates was highlighted during the interactive INCA/ENETS joint session where the topic was on collaboration of NET researchers and patient advocates to improve neuroendocrine cancer research. While the Neuroendocrine Cancer Foundation was not a presenter during this session, we were mentioned by presenters as some of the examples of meaningful involvement in research. The key takeaway was that clinical research should involve patient advocacy organizations early and throughout the clinical trial process. To this aim, we strive to forge and deepen relationships to further research collaborations globally so that we can ultimately improve the lives of patients. Watch our interviews from the ENETS Symposium with NANETS President Emeritus Dr. Thor Halfdanarson and Ohio State University Comprehensive Cancer Center (OSUCCC)’s Medical Oncologist Dr. Vineeth Sukrithan.  NANETS President Emeritus Dr. Thor Halfdanarson discusses the positive news and  results from ITM’s phase 3 COMPETE trial at the 2025 ENETS Annual Medical and Scientific Conference in Krakow, Poland. The COMPETE trial was the first prospective, randomized phase 3 study comparing PRRT with an active treatment (everolimus).  Click here to learn about COMPOSE, another ITM ongoing trial, for Well-differentiated, G2 and G3 GEP-NETs comparing PRRT versus CAPTEM (Capecitabine and Temozolomide), Everolimus or FOLFOX (Folinic acid + Fluorouracil + Oxaliplatin)>>> OSUCCC’s Medical Oncologist Dr. Vineeth Sukrithan discusses his takeaways from the 2025 ENETS Annual Medical and Scientific Conference in Krakow, Poland.  THANKS TO OUR SPONSORS