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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

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

I remember quite vividly how overwhelmed I felt when my husband was abruptly and traumatically diagnosed with neuroendocrine tumor. Not only were we dealing with the emotional impact of the news, we were overwhelmed with the amount of information we needed to learn about this rare disease. Navigating the NET journey involves much learning as well as seeking the opinion of NET experts. Dr. Dan Li, Giovanna Imbesi, & Lisa Yen at the 2019 NANETS Symposium In February 2018, Giovanna and I had the opportunity to work with many NET experts as part of the Healing NET Summit . One of the main topics was patient-provider communication. It was from those discussions that Giovanna and I first asked the question, “What can we do to become better patients?” As we brainstormed with Dr. Dan Li , the concept of a “NET VITALS” worksheet was born. We imagined that patients could fill out a worksheet with the most important (aka“vital”) information that a NET expert would need to know about their disease. This worksheet would then serve two purposes: The patient would become more familiar with their own disease through the process of filling out the worksheet. The NET expert would have a concise document with the most important information about the person’s disease (i.e. “vitals” as in “vital signs”). The hope was that this would minimize issues with patients coming to see the experts with incomplete information as well as increase the patient’s knowledge and confidence before the appointment. The result would be a more efficient appointment with the NET expert with more time spent discussing the treatment plan. While this document may feel daunting, the intent is not for it to be filled out easily nor all at one time. Take a few breaths. Break it into chunks. Do a bit at a time. It is understandable that through the process of filling it out, you will have to go and dig through your records. You will discover words that you may not know and need to look them up through the resource links. You will leave some areas blank to discuss further with your doctor. In April 2018, LACNETS first introduced the NET VITALS tool in a LACNETS workshop. Its first official use was the LACNETS Annual Patient Education Conference on May 19, 2018. It continues to be a work in progress. Our hope is to help both patient and providers with this tool that will empower patients and improve patient-provider communication. BENEFITS OF FILLING OUT NET VITALS: Helps you prepare for your NET specialist appointment. Helps you understand your disease and how this information relates to you. Helps you get organized by compiling the information and records for your upcoming appointment with your NET specialist. Clarifies questions you have for your doctor(s). Helps make your upcoming appointment more efficient. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

For everything there is a season, and a time for every purpose under heaven: a time to be born, and a time to die. — Ecclesiastes 3:1-2 Grieving the loss of a loved one is possibly the hardest task we humans will ever face. I can testify to this personally being widowed and the sole survivor of my family of origin, as well from my 45 years practicing as a Licensed Clinical Social Work in health and mental health care settings. It is an assault on one’s whole being: body, mind, heart and soul. Not only does it entail being deprived of the presence in one’s life of the one who has died, but also the dissolution of one’s self which had been inextricably bound-up with that presence. Plus, our loved one’s presence is now no longer tangibly available to help us weather the aftermath of that dissolution. Such dissolution disintegrates the boundaries within and without as one’s thoughts, sensations, emotions, memories, imaginings, behaviors, activities and relationships swirl in oceanic tides of reality, unreality and surreality. Given such disorientation, I have identified some maxims and suggestions to consider in navigating it: 1. Grief is exhausting as it depletes one’s whole being. SUGGESTION: Cut back on your activity level 50% while maintaining healthy routines. 2. Do not confuse grief with depression. Grieving evokes emotional expression while depression restricts it. SUGGESTION: Give expression to your grief in whatever ways that feel safe and unapologetic to you so it does not turn into depression. 3. Feeling is healing. There are no good or bad emotions, as all emotions give us vital energy and information about one’s experience of loss. SUGGESTION: Try not to judge your emotional suitability or intensity. Rather, give yourself permission to feel and express whatever emotions you have, even though they may be uncomfortable and overwhelming. 4. Both solitude and community are essential in the grieving process. SUGGESTION: Find both safe places and safe people with whom you can unreservedly give expression to your grief. 5. Grieving entails the loss of the sharing of the lived past, the lively present, the unlived future and the unique interaction with them between the departed and you. SUGGESTION: Distinguish between feeling the remorse that life did not turn out the way you imagined, and the regret that you could have changed the outcome. 6. The physical presence has departed, but the heart of the love shared still infinitely remains. SUGGESTION: Be aware of the loving presence of the departed that still reaches out to you, sometimes in mysterious ways such as in memories, dreams, and coincidences. 7. Grief has its own timetable and is often commensurate with the extent of the loved shared. SUGGESTION: Take whatever hours, days, months and years necessary to grieve the loss AND celebrate the love. 8. The grief will abate, but the missing will remain. SUGGESTION: Acknowledge the emptiness, accept it cannot be adequately filled, and live life in the afterglow of what you learned and received from the departed, your relationship and the love you shared. Written by Samuel Prentice Jr. NETCONNECT Mentor

We are excited and proud to share that our very own, Lisa Yen , has been named the recipient of the 2020 Monica Warner Award! Congratulations, Lisa! The Monica Warner Award is presented annually by Novartis Oncology to honor a patient, supporter, or caregiver who inspires the NET community through their passionate involvement. The awardee embodies the passion, dedication, leadership, and spirit with which Monica Warner assisted patients, caregivers, and families affected by NETs. If you have the pleasure of knowing Lisa, you know she embodies all of this and more. Carcinoid.com shared the following about Lisa’s work with LACNETS and in the NET community: “In her role as Program Director, Lisa works with the team to plan monthly educational meetings and annual patient educational conferences, fostering an environment of true accessibility that results in enhanced understanding of disease management options. Her passion for holistic health, self-care, and community have also driven her to develop programming that goes beyond education to create a culture within the NET community that is welcoming, friendly, and inclusive. “Lisa has developed a myriad of innovative programs including NETCONNECT , a peer mentorship program for newly diagnosed patients; the LACNETS Health Coaching Program , where patients receive individual self-care and well-being support; and a weekly virtual NET support group . Alongside LACNETS founder Giovanna Joyce Imbesi (a former Monica Warner Award winner) and City of Hope NET expert Dr. Dan Li, Lisa also co-created NET VITALS , a tool to empower patients and improve patient-provider communication. In addition, Lisa writes educational blogs for the LACNETS website. Because Lisa’s involvement with the NET community began with her husband’s diagnosis, she intimately understands the challenges of living with and caring for someone with NET and has also launched a monthly caregiver support group . ” Read the full announcement including an in-depth profile on Lisa and her work for the NET community here. This award comes with a $10,000 donation from Advanced Accelerator Applications ( AAA was acquired by Novartis in 2018 ) to a patient-focused charitable organization, which Lisa has graciously requested to be given to LACNETS. This is the second time LACNETS has been chosen as the charity of choice. Four years ago, LACNETS’ late founder, Giovanna Joyce Imbesi , was named the recipient of the 2016 Monica Warner Award. We are incredibly honored and grateful to receive this year’s donation! Novartis and AAA have also been long time supporters of LACNETS. We can not put into words how fortunate we are to have Lisa on the LACNETS team. Lisa’s dedication and commitment to patient advocacy is inspiring to us all. She has touched the lives of countless NET patients and caregivers. From the bottom of our hearts, we thank Lisa for all she does and continues to do for LACNETS and the NET community! Watch Lisa and her husband, Tom, share their inspiring NET journey in the video above.

I am a cancer thriver. I proclaim this cautiously so as not to offend those of you who think I’m insane. Please, hear me out. I’ve had nineteen years to reflect upon, ruminate on, wallow in, steep in, and digest my cancer diagnosis. So, if you are recently diagnosed and still make a cross with your fingers to deflect anything having to do with cancer, I get you. The scanxiety is real! News of my diagnosis blindsided me like a tsunami. I was thirty-eight years old with three young children. My husband and I had just purchased our dream home, and my teaching career was in full bloom. A colonoscopy revealed two types of cancer in my colon: stage one colon cancer in my descending colon and neuroendocrine tumor (NET) in my ascending colon. The neuroendocrine tumor had already spread to my liver. The first few months I felt like I was drowning in an ocean of unfamiliar diagnostic tests and treatments. Each new procedure came with its own slew of “What ifs?” What if I have debilitating side effects? What if they can’t access a vein? What if this treatment doesn’t work? After a year of swirling from one treatment to the next, awaiting one scan result after another, the torrents slowed to a steady stream. Physically I had survived, but emotionally I was pummeled. Holidays came and went, but joy eluded. For her birthday, my daughter asked for a slumber party, but the date happened to land on the day of my six-month MRI. My best friend stepped in to corral the little girls for a few hours while my husband drove me into LA. It broke my heart to miss this milestone in my daughter’s life. Getting scan results with Dr. Hendifar at Cedars, Sept. 2021 A few days later, at my follow-up appointment, my oncologist was thrilled to tell me my scan showed no evidence of disease. He was quick to clarify, however, I was not cured. But the seas would be calm…for a while. “A while ,” I pondered. Will “a while” get me to my daughter’s next birthday or to my son’s wedding day or to my first grandchild? Will “a while” take me to France to eat a warm baguette at a cafe that overlooks Le Louvre? These unanswered questions swirled and churned and eventually became their own tsunami…a tidal wave of an uncertain future that could come crashing down at any time to obliterate the new normal I had so painstakingly reconstructed. This uncertainty loomed so large that it began to suffocate the joy from everyday life events…my son’s soccer games, my students’ laughter, the warm cuddles of my dog. I dare not let my guard down and get too attached, lest it all is swept away, I warned myself. I didn’t want to be blindsided like I was when I was first diagnosed. This internal debate blared so loudly it drowned out the pleasures of the present moment. Getting my first Lutathera infusion. I was one of the first patients to get PRRT at Cedars Sinai. But I’m not one to give in. I didn’t give in to cancer. Instead, I found a specialist and braved a year of aggressive treatments. I would not let this disease rob me of my joy. In talking this over with a friend, she told me how counseling had helped her cope with the trauma of her divorce. She gave me her counselor’s name, Pat, and suggested I give her a try. At my first meeting with Pat, I gushed with doomsday scenarios of my future. Pat listened with compassion, nodded, and took notes. Then she explained that my reaction to what I had been through was completely normal. In fact, there was a name for it: adjustment disorder. Adjustment disorder is defined as an emotional or behavioral reaction to a stressful event or change in a person’s life. Symptoms can include anxiety, depressed mood, or disturbance of emotions. This diagnosis felt like an anchor I could hold onto in this sea of uncertainty. After being tossed and turned by the currents of a precarious future, I’ve finally reached calm shores. Like the captain of my own celestial vessel, I’ve learned to sail on the winds of the four C’s: cope, create, commune, and curate . Cope: First, I had to learn some tools that would allow me to cope with the onslaught of thoughts. Some thoughts were little and menacing… Will the nurse get the Sandostatin injection in one try today or will I be stuck 3 times? And some were more like torpedoes, Will next week’s MRI reveal that the tumors are progressing again? My counselor acknowledged the intensity and frequency of my thoughts were a normal side effect of adjustment disorder. She likened the thoughts to a build-up of energy that needed to be heard and validated before they could be released. Pat told me to imagine placing all my contrived scenarios into an imagined Tupperware container and keep it on a shelf in my mind. At designated times each day, I could pull the container off the shelf, open it up, and let the thoughts run wild. Twice a day, I’d let the thoughts run amok. My cry sessions, like controlled releases of an emotional damn, resulted in fewer untimely breakdowns. My daughter's creativity flows from the tip of a paintbrush. Create: I believe, as humans, we come to Earth to create. Some are artists, some are quilters, some are composers, while some are gardeners. I am a writer; art flows from the tip of my pen. Words pour out like a waterfall when I’m heartbroken and carry me to peaceful pools of healing. Journaling has become a way to cope. After receiving the news of a scan that showed progression, words scribbled out of devastation and despair somehow arranged themselves into a message of hope. First, contrived scenarios gushed out of my fingertips as if from a slashed artery. Like a warm blanket, my journal collected these broken words and cradled them in love and compassion. After I had spelled out the doomsday scenarios, I asked God to respond on the opposite page. Like golden honey, sweet words of hope dripped from my fingertips to offer divine insight. Documented in my journal, these words are often revisited and become a salve for my soul. Commune : Despite living with cancer, I’ve been able to thrive by tapping into my spirituality. First, I’ve learned to connect with my true self. Through prayer, meditation, walks in nature, and reading the stories of others, I’ve come to realize I am much more than my physical body. This knowledge helps me cope with the loss of my zebra friends. When I still myself and look within, I continue to feel their presence. This is especially true for Giovanna, our LACNETS founder. I often take time to honor her with my thoughts when I see a beautiful sunset. Her ethereal presence continues to resonate in my spirit, lighting my path and offering encouragement when I need it. By communing with God and his angels, I’m able to get in touch with who I really am and understand I am much more than my physical body. Giovanna Joyce Imbesi, MBA, LACNETS Founder Connect: A silver lining of living with neuroendocrine tumors is the opportunity to connect with others. Serving as a mentor for newly diagnosed patients is an honor and my way of paying it forward. Giovanna and I were diagnosed around the same time (early 2000’s). She knew the power of networking and realized we needed a support group for NET patients in the Los Angeles area. She may no longer be with us physically, yet her legacy lives on through LACNETS. While I’m blessed with family and friends that care deeply, sometimes I need the credibility of someone who’s “been there and done that.” NET is so rare and manifests in so many unusual ways, I find connecting with fellow patients and caregivers through LACNETS brings great comfort. Curate : Finally, I not only want to share my own story of hope, but I want to provide others with an opportunity to share their story. Recently, I created a website to curate my own writing. Then my friend asked if she could post her story about surviving breast cancer. I was thrilled to do so. In my next chapter, I desire to be a collector of stories, stories of people just like me who were blindsided by an unexpected diagnosis. We each navigate the sea of uncertainty in our own unique vessels drawn by whatever light we see flickering on the horizon. I hope my journey anchors you, despite the presence of turbulent news. And hopefully someday you will be an anchor for those who follow you. We are so much more than our physical body, and we will thrive NO. MATTER. WHAT. To read and follow Kelli’s story, visit her website at kellidevanedwards.com . Written by Kelli Devan Edwards , NET Patient, NETCONNECT Mentor

JOIN ME in giving back on # GivingTuesday ™. On Tuesday, November 30, 2021, people from all over the world will come together for one purpose: to celebrate generosity and to give. Why do I give? The tragic thing about cancer is that it often feels like we are robbed of so much… time, finances, pre-cancer identity, hopes and dreams, and a sense of peace. When my husband was diagnosed with neuroendocrine cancer , my world was suddenly turned upside down. I felt I had lost so much. I have grieved the loss of the person that I was before that day, the loss of the job and career that I intentionally chose to leave, and the loss of hopes and dreams. For those whose lives are touched by neuroendocrine cancer, the pain and grief can be unspeakable at times. And yet, while I may have lost many things, I have also gained so much. It is through the loss and pain that a new life has sprouted. I have been blessed with a new perspective, a new appreciation for life, new friends and community, and deeper connections with family and old friends. During these past couple of years, there have been certain moments that will forever be etched in my memory… When I felt alone, anxious, or desperate for help, these act of kindness made an indelible mark on my soul: An acquaintance who dropped off flowers, food, or fresh produce from the farmer’s market. A friend who sat beside me while I waited for my husband to come out of surgery. A stranger who took the time to share his own experience with the treatment we would soon undergo. A doctor who extended kindness and took the time to listen. I remember all those moments. They are a balm to my soul. It is because of those moments that I want to give back. I give because I want to pay it forward. I give because I see the need for others to experience that kindness. I give because I want to make an impact for myself, my zebra, and for other zebras. I give because I want to inspire hope. I invite you to contribute to our Vision supporting neuroendocrine (NET) cancer patients and their loved ones. With your help, LACNETS will be able to provide its programs free of charge to those whose lives have been affected by neuroendocrine cancer. This annual initiative in memory of Giovanna Joyce Imbesi, late founder of LACNETS, whose vision was to empower NET patients and caregivers by providing a healing exchange of educational resources and emotional support so they may learn to live richly and fully. Large or small, every gift matters and is genuinely appreciated. Be a part of the healing. Make a difference today! LACNETS is a 501(c)(3) non-profit corporation, Tax ID #20-0062062. All donations are tax-deductible as allowed by law. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS