Find essential resources tailored for caregivers of neuroendocrine cancer patients. Navigate challenges with our comprehensive support tools. Essential Resources for Caregivers of Cancer Patients Virtual NET Caregiver Support Group 1. Virtual NET Caregiver Support Group 2. Free Health Coaching for Caregivers 3. Organizations Offering Resources for Caregivers 4. Organizing Help/Communication 5. Caregiver Self-Care Resource 6. End-of-Life Planning 7. Resources for Children 8. Learning Resources About Caregiving 9. Patient & Caregiver Stories VIRTUAL NET CAREGIVER SUPPORT GROUP Join LACNETS via Zoom every month. We would like to provide a safe space where NET caregivers can virtually come together for support and community. Register Here FREE HEALTH COACHING FOR CAREGIVERS LACNETS offers a series of FREE one-on-one telephonic coaching sessions (8-10 total) to NET caregivers within the Southern California region who are motivated to invest in their own self-care. Sign Up Here ORGANIZATIONS OFFERING RESOURCES FOR CAREGIVERS Cancer Support Community Centers for Disease Control and Prevention Springboard Beyond Cancer Cancer & Careers National Cancer Institute Click here to download the "When Someone You Love Has Advanced Cancer" booklet American Cancer Society Click here to download the Interactive Caregiver Resource Guide Triage Cancer Quick Guide to Caregiving Animated Video: Supporting Caregivers (available in English, Spanish, and closed captioning) Caregiving Resources Page Legal & Financial Navigation Program Additional Resources for Caregivers Share Your Story (NETRF) The Emotions of Living With Neuroendocrine Tumors (NETRF) Assistance and Support for Neuroendocrine Tumors (NETRF) Living Well with Serious Illness (NETRF) Livestrong Caregiver Support Oncolink Caregivers Information & Resources www.HelpForCancerCaregivers.org National Alliance for Caregiving Family Caregiver Alliance NCI: Caring for the Caregiver and Taking Time: Support for People With Cancer Cancer Hope Network American Cancer Society: Caregivers and Family AARP - Senior Care Needs ORGANIZING HELP/COMMUNICATION www.mealtrain.com www.lotsahelpinghands.com www.caringbridge.org https://www.abridge.com/patients CAREGIVER SELF-CARE RESOURCE https://www.caregiver.org/resource/taking-care-you-self-care-family-caregivers/ END-OF-LIFE PLANNING LACNETS Webinar - "Meaningful Advance Care Planning as a Gift to Your Loved Ones" EverPlans - To help prepare/plan for challenging times Practical Considerations when providing Palliative Care to patients with Neuroendocrine Tumors in the context of routine disease management or hospice care EndWell Project Five Wishes Hospice Foundation Guide (useful for more than hospice) Death Over Dinner Coda Alliance - Empowering easier, early, end-of-life conversations Click here for Grief and Loss Resources RESOURCES FOR CHILDREN CancerCare for Kids® provides free, professional support services for parents, children and adolescents affected by cancer, as well as information about helping children understand cancer and additional resources. Learn more here. Help with Hope is a support group to the children whose parent has cancer. If you are a parent with cancer and have a child between the ages of 8 and 17, they can attend an online meditation support group with other kids who understand what they are going through, parents are also invited! Learn more here. Kesem is committed to creating a world where every child who has a parent with a cancer diagnosis or has lost a parent to cancer is never alone. Kesem supports these children through and beyond their parent’s cancer with free, fun-filled creative programs and a lasting community. Learn more here. Lynn Lyons helps families navigate through fear and anxiety. Click here to learn more. LEARNING RESOURCES ABOUT CAREGIVING LACNETS Webinar: " How to Ask For, Accept and Get the Help You Need" with Kim Hamer LACNETS Webinar: “Meaningful Advance Care Planning as a Gift to your Loved One” with Redwing Keyssar, RN Listen Now: NETwise Podcast PATIENT & CAREGIVER STORIES Patient/Caregiver Stories Play Video Share Whole Channel This Video Facebook Twitter Pinterest Tumblr Copy Link Link Copied Now Playing Patient Journey • Katie Shares Her Story • 2026 NCF Patient Conference 06:50 Play Video Now Playing Patient & Caregiver Journey - Serra & Quintin 06:12 Play Video Now Playing Bob, NET Patient 05:47 Play Video Resources for Children Organizing Help/Communication Free Health Coaching for Caregivers Caregiver Self-Care Resource End-of-Life Planning Organizations Offering Resources for Caregivers Learning Resources About Caregiving Patient & Caregiver Stories BLOG POSTS "What Matters Most" - Lisa Yen "What it Means to be a Caregiver" - Beth Voyles

Learn how to explain your diagnosis with the NET Intro tool. Create a quick summary to share with healthcare providers, caregivers, and loved ones. NET Intro: How to Talk About Your NETs Diagnosis The NET Intro card can be filled out digitally using a PDF editor or printed and filled out. DOWNLOAD THE NET INTRO CARD Esta página también está disponible en español, se encuentra aquí. WHAT IS A NET ELEVATOR SPEECH? An elevator speech is a way of introducing yourself. The reason it’s called an “elevator speech” is because it should be short enough to say during a brief elevator ride. We define a NET elevator speech as a two-sentence synopsis of your NET cancer which can be communicated in 30 seconds or less. If you were in an elevator with a NET expert and had only 30 seconds, your NET elevator speech is your concise two-sentence introduction that relates the most important things they need to know about your disease. This is your NET Intro, the way you introduce yourself to someone who doesn’t yet know your NET history. Your NET elevator speech consists of two sentences, and contains items #2-6 on page 1 of NET VITALS . SENTENCE #1: 1. Your relationship to NET: If you are living with NET, you might start the sentence with: “I am living with…” “I was diagnosed with…” If you are an ally or loved one of someone living with NET, you might start the sentence with: “My spouse/child/parent/relative/friend/other relation is living with…” “My spouse/child/parent/relative/friend/other relation was diagnosed with…” Note: Because we believe words are powerful, we discourage identifying yourself as a patient or by the disease. Instead, we encourage using “I am living with” or “I was diagnosed with” or “I was diagnosed X year with…” or even “I have…” Some people even say “I am living well with…” because it gives the message that people can thrive while living with NETs. 2. Tumor differentiation: This is either "well differentiated" or "poorly differentiated.” It refers to how abnormal the cells look when compared to the surrounding healthy, non-cancer cells under the microscope. 3. Tumor grade: This is grade 1, 2, or 3. If you know your ki-67, you can add this element, as it determines the grade of the tumor. This refers to how quickly the tumor cells are dividing. It can be found on your pathology report, a report that is done whenever tissue is taken from your body, usually from a biopsy or surgery. Grade is different from stage which refers to how far the cancer has travelled from the original site of the tumor. It’s easy to confuse grade with stage, but they actually say very different things. The general public is familiar with staging, because it is a common way to describe a cancer and gives an idea of someone’s prognosis. However, it’s important to remember that stage 4 with neuroendocrine cancer does not mean the same thing as stage 4 with other cancers. Please note that lung NETs are not classified by grade; they are classified as typical carcinoma, atypical carcinoma, large cell neuroendocrine carcinoma, and small cell carcinoma. Pheochromocytomas and paragangliomas are also not classified by grade. NETWise Infographic Stage, Differentiation & Grade, courtesy of Neuroendocrine Tumor Research Foundation - Download Here Lung NET infographic, courtesy of Neuroendocrine Tumor Research Foundation - Download here Lung NET resources can be found here. 4. Functional status of the tumor: This is either functional or nonfunctional. This means specifically whether the tumors produce hormones (functional), or they do not produce hormones (nonfunctional). This is different from stating if you experience symptoms, since symptoms could be from a variety of reasons. This specifically refers to whether or not your tumors produce hormones that cause symptoms. 5. Site of tumor origin and metastases: This is where your tumor originates from (i.e. pancreas, small intestine, lung, colon, etc.) and anywhere else it might be located (i.e. liver, bones, etc.). The primary site of your tumor remains the same even after it has been removed and even if you no longer have evidence of disease. One reason the primary site of your tumor is important is that it helps your doctor determine what treatment options are available and best suited for you. 6. Year of diagnosis (optional) This is my example of sentence #1: "My husband has been living with well-differentiated, Grade 2 (ki-67 15) nonfunctional pancreatic NET with metastases to the liver and bones since 2015.” "My husband was diagnosed in 2015 with well-differentiated, Grade 2 (ki-67 15) nonfunctional pancreatic NET that has metastasized to the liver and bones.” SENTENCE #2: Sentence #1 is foundational. Once you’ve mastered sentence #1, then -- and only then-- are you ready to build on it by adding sentence #2. Most of us have an easier time with sentence #2 because we usually know what treatments we’ve had. Sentence #2 consists of a brief summary of your surgeries and treatments. The key here is to be succinct. This is my example of sentence #2: “My husband has had surgery, somatostatin analog (lanreotide or octreotide), liver directed therapy, and PRRT.” There it is—your NET story as a brief two-sentence NET Intro that takes less than 30 seconds. While it may sound simple, we recognize that building your elevator speech may not be easy. Furthermore, it takes work and practice to become comfortable delivering your elevator speech. Write it down. Have it handy. Then practice, practice, practice ! It takes repetition to become fluent in this new language so it rolls easily off the tongue. WHAT ARE THE BENEFITS OF LEARNING YOUR NET INTRO? You are learning to “speak NET” so you’re on the same page as a NET expert. By sharing your NET elevator speech, you are communicating the critical elements that they need to know to guide treatment decisions. It’s important that YOU know and understand your own disease, and don’t just rely on your medical team to do so. Learning to speak NET helps you know what information or treatments are relevant to you. When you participate in educational meetings, you might be better able to interpret and apply the information. When you look at clinical trials, you might be better able to understand whether you are a candidate for certain trials. It helps you communicate the essential elements of your neuroendocrine cancer concisely, clearly, and efficiently. Communicating the critical elements of the disease efficiently means that time can be better spent on other things such as talking about treatments or getting your questions answered. This might be in a support group setting or with others living with NETs. This might be when speaking to your NET expert at a medical appointment or perhaps a NET expert you meet at an educational conference. Using your NET elevator speech, you can speak NET to better communicate your “NET VITALS.” WHAT SHOULDN’T BE IN YOUR NET INTRO? Words are powerful. We discourage people from identifying themselves or their loved ones as a patient or as a disease. We want to use words that empower and that show we view ourselves as whole people rather than being defined by an illness. Note that your NET Intro is not the same thing as your story. There is a time and a place for telling your story of how you were diagnosed and how NET has impacted you personally. Giving an elevator speech does not replace telling your story; it is a different skill that serves a different purpose. Knowledge is powerful! In this rollercoaster journey where things may sometimes feel out of control, here is something you can control. Learning your NET elevator speech helps you to communicate in the language of NET experts. We can be better patients and advocates by bridging our knowledge gaps and understanding foundational NET terms and concepts. Now go forth and build your own NET elevator speech. Let’s learn to “speak NET” together! DOWNLOAD THE NET INTRO CARD The NET Intro card can be filled out digitally or printed and filled out. Esta página también está disponible en español, se encuentra aquí. RESOURCES If you're not sure what the above terms mean or how to find the differentiation, grade, or ki-67 on your pathology report, we recommend the following resources: NETRF’s NETWise infographic “Stage, Differentiation, & Grade” NETRF’s NETWise podcast Episode 1: What You Need to Know About NETs NET VITALS webinar (starting @14:20) Pathology webinar by Dr. Sue Chang (starting @ 36:43) Symptom Management presentation by Dr. Del Rivero (covers functional tumors and management of carcinoid syndrome) NOTE: NET Intro is a document for personal use only. It is not submitted to nor collected by LACNETS. It is a document for you to fill out and take with you to your physician appointment. This document is intended for informational and educational purposes only and is not a substitute for professional medical advice. Always consult with your physician or health care provider.

Join NCF for Apr2026. Explore event details, dates, times, and discover opportunities to connect, learn, and get involved. < Back to the upcoming events page https://www.youtube.com/watch?v=x-7k7GDS2CU Some Topics Covered: Neuroendocrine Cancer, Newly Diagnosed Download Presentation Slides >>> ABOUT Being newly diagnosed with neuroendocrine cancer can feel overwhelming. Many patients find themselves asking, “What exactly is neuroendocrine cancer, and how is it different from other cancers?” This webinar is designed to bring clarity, reassurance, and guidance during one of the most confusing stages of the neuroendocrine cancer journey. Join Dr. Osama MoSalem, medical oncologist at St. Luke’s in Kansas City , for a clear and compassionate overview of what every newly diagnosed NET patient should know. Dr. MoSalem will explain what neuroendocrine cancer is, why it behaves differently from more common cancers, and how its unique features influence diagnosis and treatment. This session will walk you through the most important early concepts, including: Grade and stage: what they mean and why they matter Key tests and scans used at diagnosis Treatment pathways , including when to consider surgery, medications, targeted therapies, radioligand therapy, or clinical trials Essential questions to ask your care team Practical first steps to help you feel more prepared and empowered Whether you’re newly diagnosed, supporting a loved one, or simply trying to better understand this disease, this webinar will provide a solid foundation to help you make informed decisions with greater clarity and confidence. ABOUT DR. OSAMA MOSALEM Medical Oncologist St. Luke's Health System Kansas City Osama MoSalem, MD is a board-certified hematologist and medical oncologist with Saint Luke’s Cancer Specialists in Kansas City, MO where he specializes in the care of adults with gastrointestinal (GI) cancers including neuroendocrine tumors. In addition to caring for patients, Dr. MoSalem has been involved in clinical research primarily focused on gastrointestinal cancers, neuroendocrine tumors and precision oncology. Dr MoSalem earned his medical degree from Cairo University, Egypt, residency training in internal medicine at Michigan State University, followed by fellowship training at the Mayo Clinic College of Medicine and Science in Jacksonville, Florida. Outside of medicine, Dr. MoSalem enjoys staying active, playing soccer, and spending time with his family. THANKS TO OUR SPONSORS T he opinions expressed by the guest presenters, as well as the questions asked by the audience, have not been created or suggested by the Neuroendocrine Cancer Foundation or the sponsors of this program. The Neuroendocrine Cancer Foundation does not endorse or promote any of the views, opinions or information provided in this presentation. Audience members should not rely on the opinions or information expressed by the guest presenter and should seek guidance and direction from their own medical advisors regarding any choices they make about their health or treatments.

Pheo Para < Back to Topics Play Video Play Video 01:37:36 "The Latest in the Management of Functional Neuroendocrine Cancers • Jan, 2026 • Dr. Del Rivero Join this @NCFCancer educational patient event for an easy-to-understand overview of functional neuroendocrine tumors (NETs) with Dr. Jaydira Del Rivero, a medical oncologist and endocrinologist at the National Cancer Institute. Functional NETs can cause the body to produce too many hormones, leading to challenging symptoms such as low blood sugar (often seen in insulinoma), high blood sugar (glucagonoma), and other hormone-related issues. Dr. Del Rivero will explain what these syndromes are, how they’re diagnosed, and the latest updates in treatment. She will also discuss conditions that can occur because of NETs or their treatments. She will help patients understand why symptoms like hypoglycemia are more common in some NET types. Whether you’re a patient, caregiver, or simply want to better understand functional NETs, this webinar will offer practical, up-to-date information to help you feel more informed and empowered. Potential Topics: Functional NET, Hormone-producing, Insulinoma, Gastrinoma, VIPoma, Zollinger-Ellison syndrome (ZES), Carcinoid, Hypoglycemia, Diarrhea, Flushing ABOUT DR. JAYDIRA DEL RIVERO Medical Oncologist & Endocrinologist National Cancer Institute, National Institutes of Health Dr. Del Rivero earned her medical degree from the University of Veracruz in Veracruz, Mexico and completed her internal medicine residency at Woodhull Medical and Mental Health Center/NYU-Langone Medical Center. Dr. Del Rivero completed a fellowship in Endocrinology, Diabetes and Metabolism at The Inter-Institute Endocrinology Training Program (IETP) at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), The National Institute of Child Health and Human Development (NICHD), and The National Institute of Dental and Craniofacial Research (NIDCR) where she was part of a research team developing clinical trials for pheochromocytoma and paraganglioma. She then joined as Assistant Professor at the Montefiore Einstein Center for Cancer Care (MECCC) where she specialized in endocrine oncology involving thyroid cancer, parathyroid and adrenal tumors, and clinical research for gastroenteropancreatic neuroendocrine tumors. She subsequently completed a second fellowship in medical oncology at the National Cancer Institute (NCI) with a research focus on endocrine malignancies. Dr. Del Rivero is board certified in Internal Medicine, Endocrinology, Diabetes and Metabolism and Medical Oncology. Dr. Del Rivero is a Physician Scientist in the Developmental Therapeutics Branch. She is the Principal Investigator of the Natural History Study for Neuroendocrine Neoplasm and Adrenocortical Cancer to provide the basis of further development of therapeutic interventions, prevention/screening guidelines, endpoints for future clinical trials, and patient reported outcome measures. Dr. Del Rivero’s current efforts is the development of novel treatment approaches and targeted therapies for endocrine malignancies such as advanced gastroenteropancreatic neuroendocrine tumors, adrenocortical cancer and pheochromocytoma/paraganglioma. For more information, visit https://www.ncf.net/events/jan2026 Play Video Play Video 01:07:09 Episode 12: Pheochromocytoma & Paraganglioma (PPGL) ABOUT THIS EPISODE In honor of Pheo Para Awareness Week, NET endocrinologist and medical oncologist Dr. Jaydira Del Rivero of the National Cancer Institute answers ten common questions about pheochromocytoma and paraganglioma (PPGL). Dr. Del Rivero defines PPGL and describes the unique symptoms, genetic testing, and treatment options for PPGL. MEET DR. JAYDIRA DEL RIVERO Dr. Del Rivero earned her medical degree from the University of Veracruz in Veracruz, Mexico and completed her internal medicine residency at Woodhull Medical and Mental Health Center/NYU-Langone Medical Center. Dr. Del Rivero completed a fellowship in Endocrinology, Diabetes and Metabolism at The Inter-Institute Endocrinology Training Program (IETP) at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), The National Institute of Child Health and Human Development (NICHD), and The National Institute of Dental and Craniofacial Research (NIDCR) where she was part of a research team developing clinical trials for pheochromocytoma and paraganglioma. She then joined as Assistant Professor at the Montefiore Einstein Center for Cancer Care (MECCC) where she specialized in endocrine oncology involving thyroid cancer, parathyroid and adrenal tumors, and clinical research for gastroenteropancreatic neuroendocrine tumors. She subsequently completed a second fellowship in medical oncology at the National Cancer Institute (NCI) with a research focus on endocrine malignancies. Dr. Del Rivero is board certified in Internal Medicine, Endocrinology, Diabetes and Metabolism and Medical Oncology. TOP 10 PPGL QUESTIONS 1. Who should be listening to this podcast episode? Do all NET patients need to know about PPGL? 2. What is PPGL? Is this a cancer? How common is PPGL? How do we know which ones have a higher risk of metastasis? 3. Is this genetic? Who should get genetic testing and when should they get it? Should family members/children get genetic testing or cancer screening? 4. What are the symptoms of PPGL? 5. How is PPGL diagnosed? What labs should be done for PPGL? What scans should I get if have PPGL? Is there a certain priority or order to which scans should get done and when? 6. What is the treatment for PPGL? How do I get appropriate treatment? How do I know what appropriate treatment is? 7. What if my disease is metastatic? What are my treatment options? 8. What if my disease recurs after surgery? What are my treatment options? Could I have surgery again? 9. Will my symptoms be gone after surgery or treatments? 10. I’ve been told I can’t get a biopsy and that surgeries might be dangerous. What do I need to know and what do I need to do? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast12. Dr. Del Rivero is a Physician Scientist in the Developmental Therapeutics Branch. She is the Principal Investigator of the Natural History Study for Neuroendocrine Neoplasm and Adrenocortical Cancer to provide the basis of further development of therapeutic interventions, prevention/screening guidelines, endpoints for future clinical trials, and patient reported outcome measures. Dr. Del Rivero’s current efforts is the development of novel treatment approaches and targeted therapies for endocrine malignancies such as advanced gastroenteropancreatic neuroendocrine tumors, adrenocortical cancer and pheochromocytoma/paraganglioma. Play Video Play Video 01:42:02 "Focus on Pheochromocytoma and Paraganglioma" - Jan 2023 LACNETS Educational Event Join LACNETS for a Rebroadcast of the unique webinar presentation of three pheochromocytoma and paraganglioma (PPGL) cases and an engaging panel discussion with experts Dr. Jaydira Del Rivero, Dr. Erik Mittra, and Dr. Karel Pacak. (Original broadcast on Wednesday, January 11, 2023) Play Video Play Video 09:47 Caregiver Story - Pheo/Para Aimee Powell, a caregiver and advocate for family members diagnosed with pheochromocytoma and paraganglioma shares what led her to a life of patient advocacy and assisting patients with these rare tumors. Aimee is the founder of The Pheo Para Project – www.pheoparaproject.org. To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 01:38:21 LACNETS Webinar: "Update on Pheochromocytoma and Paraganglioma" with Dr. Jaydira Del Rivero Have you wondered if NETs might be hereditary? What do you know about pheochromocytoma and paraganglioma (pheo/para)? NET expert Dr. Jaydira Del Rivero gives a full update on these rare and often misdiagnosed conditions. Recorded on February 17, 2022. To download a copy of Dr. Del Rivero's presentation slides, go to bit.ly/slides_feb2022. This presentation is also available in Spanish, found here: youtu.be/moN-iwvoTsI Speaker: Jaydira Del Rivero, MD, Endocrinologist, Oncologist, National Institute of Health To learn more about LACNETS, visit www.LACNETS.org. < Back to Topics Next Topic >

Apply now for an NCF travel grant for eligible neuroendocrine cancer patients and families attending qualifying in-person events. Travel Grants for Neuroendocrine Cancer Patients TRAVEL GRANT NCF is offering a limited number of $250 travel grants for qualified attendees of this in-person event. To be considered for assistance, please fill out the short questionnaire below. Self-reported household income must fall within the 500% poverty guidelines. Check the chart below. Selected applicants must confirm their attendance at the registration table on November 9th to receive the funding. Apply for a travel grant First name* Last name* Email* Phone I confirm that my household income falls within the 500% federal poverty guidelines. * I declare that the information I've provided is true & accurate. * Apply

Join NCF for Oct2024. Explore event details, dates, times, and discover opportunities to connect, learn, and get involved. < Back to the upcoming events page Join us Friday, October 18th at 1:00 PM Pacific to hear renowned liver and pancreas surgeon Dr. Gagandeep “Gaugs” Singh discuss the evolving algorithms in the management of NET liver metastases. Dr. Singh, Chief of Surgical Oncology at City of Hope® Cancer Center in Phoenix, asks the question whether it is prudent to be aggressive surgically, or if it is all about timing and strategy. There will be a live Q&A session immediately following his presentation. Please submit your general questions on surgical interventions of liver metastases into the Slido submission form below. SUBMIT YOUR QUESTIONS *Submit your non-case specific questions below. ABOUT GAGANDEEP SINGH, M.D., F.A.C.S. Internationally renowned liver and pancreas surgeon Gagandeep “Gaugs” Singh, M.D., F.A.C.S., is Chief of Surgical Oncology and Director of Surgical Services at City of Hope® Cancer Center Phoenix. A seasoned health care leader with more than 20 years’ experience building outstanding surgical teams, Dr. Singh is excited to return to Phoenix – where he completed part of his medical training – and to City of Hope, where he spent a decade as the chief of City of Hope Duarte’s surgical oncology program. In the clinic, Dr. Singh takes a thoughtful yet forceful approach to treating cancers of the liver, pancreas and gastrointestinal systems. As a health care leader, he is passionate about empowering teams to achieve their fullest potential. He has been recognized with numerous awards and leadership positions. After beginning his faculty academic career at the Keck School of Medicine at the University of Southern California in Los Angeles, Dr. Singh was appointed director of the Liver and Pancreas Center at the John Wayne Cancer Institute in Santa Monica, California, where he also served as chair of the Cancer Committee. At City of Hope Duarte, Dr. Singh spearheaded the liver and pancreatic cancer programs and led the Division of Surgical Oncology to national recognition. He has been included on multiple lists of “America’s Top Surgeons,” “Best Doctors of America,” “Super Doctors” and “Top Doctors of America.” Dr. Singh earned his medical degree from the Mahatma Gandhi Institute of Medical Sciences in India, before training at multiple internationally renowned cancer centers, including Tata Memorial Hospital and Cancer Center in Bombay, René Descartes University in Paris and the Royal Liverpool University Hospital in the United Kingdom, as well as the Marion Bessin Liver Center at the Albert Einstein College of Medicine in New York, Maricopa Medical Center in Phoenix and the University of Iowa. A board-certified surgeon, diplomate of the American Board of Surgery and fellow of the American College of Surgeons, Dr. Singh is an internationally recognized expert in his field and a member of the National Comprehensive Cancer Network for Hepatobiliary Cancers, the group that sets the guidelines for the standard of care for hepatobiliary cancers. As a researcher, Dr. Singh has written on topics such as complex liver resections for liver metastases, management algorithms for neuroendocrine tumors, vascular reconstructions with difficult pancreatic surgery for pancreatic cancer and advanced robotic surgery. His work on robotic surgery has been presented at the Society of Surgical Oncology, America’s Hepato-Pancreato-Biliary Association, the Society of Laparoscopic & Robotic Surgeons and other national meetings. An innovator at heart, he is in constant pursuit of enhancing the surgical experience and developing technical innovations in liver and pancreatic surgery. He has collaborated with engineers from the California Institute of Technology and Harvey Mudd College and has several invention disclosures and patents to his name. Dr. Singh’s translational research includes projects with molecular biologists, X-ray crystallographers, structural chemists and super-resolution scientists across the City of Hope national system. The opinions expressed by the guest presenters, as well as the questions asked by the audience, have not been created or suggested by LACNETS or the sponsors of this program. LACNETS does not endorse or promote any of the views, opinions or information provided in this presentation. Audience members should not rely solely on the opinions or information expressed by the guest presenter and should seek guidance and direction from their own medical advisors regarding any choices they make about their health or treatments. THANKS TO OUR SPONSORS REGISTER

Para los recién diagnosticados COMPLETE EL FORMULARIO DE PACIENTE/CUIDADOR AQUÍ - ÚNASE A LACNETS Te acaban de informar que tienes un Tumor Neuroendocrino, Cáncer Neuroendocrino o Carcinoide. Lo primero que sentimos puede ser pánico, incredulidad, desesperación o quizás una sensación de alivio al haber sido finalmente diagnosticado. Después del impacto inicial, cuando volvemos a pensar claramente, nos viene a la mente la pregunta "¿y ahora qué?" Toma el control, conviértete en tu defensor y en líder de tu equipo de salud. Esta es una guía para los recién diagnosticados con NETs, donde podrás encontrar consejos y datos útiles. NOTAS: Todos los recursos marcados con * están únicamente disponibles en Ingles. Para instrucciones en como activar subtítulos en español en los videos de YouTube haz clic aquí. 7 CONSEJOS PARA EL PACIENTE RECIÉN DIAGNOSTICADO (Haga clic para desplazarse hacia abajo y obtener más información sobre cada consejo.) 1. ORGANÍZATE 2. EDÚCATE SOBRE LA ENFERMEDAD Y APRENDE A HABLAR “NET” 3. BUSCA APOYO 4. BUSCA UN ESPECIALISTA EN NETS 5. DECIDE QUIÉN SERÁ TU MARISCAL DE CAMPO 6. ASISTE A UNA CONFERENCIA DE EDUCACIÓN PARA PACIENTES CON NETS 7. RESPIRA PROFUNDO 7 HECHOS SOBRE LOS NETs 1. EL CÁNCER NEUROENDOCRINO TAMBIÉN SE CONOCE COMO TUMOR NEUROENDOCRINO. 2. LOS NETS SON UN TIPO DE CÁNCER RARO QUE AFECTA APROXIMADAMENTE A 6,98 DE CADA 100.000 PERSONAS. 3. LOS NETS PUEDEN AFECTAR LAS CÉLULAS NEUROENDOCRINAS EN TODO EL CUERPO. 4. LOS NETS SON DIFÍCILES DE DIAGNOSTICAR. 5. NO TODOS LOS PACIENTES CON NETS TIENEN SINTOMAS. 6. LA CAUSA ES DESCONOCIDA. 7. ES MUY IMPORTANTE BUSCAR LA OPINIÓN DE UN ESPECIALISTA EN NETS. 1. ORGANÍZATE NET VITALS* es un excelente lugar para comenzar. NET VITALS es un documento descargable con la información más importante que los pacientes y los profesionales de la salud necesitan saber sobre el Cáncer Neuroendocrino. Su propósito es servir como una herramienta de comunicación médico-paciente, como un “Pasaporte NET” que contiene toda la información importante y que puedes llevar a todas tus citas con el médico. Si bien no es un documento médico, ha sido revisado por especialistas en NETs que están de acuerdo en lo útil que puede ser que los pacientes completen sus NET VITALS* antes de su cita. Nota: NET VITALS únicamente tiene fines informativos y educativos. LACNETS no recopila ni almacena sus NET VITALS. Solo para su uso personal. NET VITALS puede ayudar de la siguiente manera: A prepararte para tu cita con tu especialista en NETs. A aprender de tu enfermedad y a entender cómo esta información se relaciona contigo. A organizar y recopilar la información y los registros relevantes para la próxima cita con tu especialista en NETs. A aclarar y formular las preguntas que tengas para tu(s) médico(s). A ayudar para que tu próxima cita sea más eficiente. Cómo llenar NET VITALS: Descarga NET VITALS aquí. * Ve el seminario web de NET VITALS aquí.* Cuando encuentres términos y tratamientos que no te sean familiares, consulta los recursos en la última página del documento NET VITALS. CNETS proporciona una excelente guía comprensiva para pacientes, la puedes encontrar aquí . (Disponible en inglés y francés) Completar NET VITALS puede ayudar a identificar la información que necesite ser clarificada por tu especialista en NETs y te ayuda también a crear una lista de preguntas relevantes para la próxima cita con tu especialista en NETs. Lleva el documento a las citas con tu especialista en NETs. Es probable que tendrás que actualizarlo a medida que vayas teniendo nueva información. CONSEJOS PARA EL ALMACENAMIENTO DE REGISTROS (consulte NET VITALS* para obtener una lista de información médica importante): Muchas personas eligen guardar y organizar su información en papel, ya sea en carpetas de archivos, cuadernos o blocks de notas. Si guardas copias en papel de resultados de laboratorio, reportes de imágenes, informes de patología, etc., considera escanearlos a tu computadora. ¡Esto no solo facilita el acceso a tus registros, sino que también evita que pierdas la información si la copia en papel se pierde o es dañada. Almacenar tus registros en forma digital, ya sea en tu computadora o en un servicio en la nube, puede ser útil si deseas enviar información electrónicamente, como al pedir una segunda opinión. Algunas personas realizan su seguimiento de los resultados de laboratorio en una hoja de cálculo para así poder hacer comparaciones y seguir su progreso. Elijas lo que elijas, ¡organización es la clave! Tener todo almacenado en un mismo lugar es muy importante. Además, la información debe ser fácil de acceder y de compartir con tu equipo médico cuando sea requerido. Después de cada escaneo, vaya a la oficina de registros médicos o a la librería de imágenes y solicita un CD con las imágenes escaneadas para tus archivos. A la vez, solicita una segunda copia para tu especialista en NETs o para pedir una segunda opinión. Nunca entregues tu única copia de un CD o de cualquier documento. Después de cualquier biopsia o cirugía, solicita a tu médico una copia del informe de patología. (Estos a veces no se encuentran en los portales electrónicos para pacientes, por lo que es posible que sea necesario solicitar una copia) De la misma manera, después de cualquier cirugía o procedimiento, solicita el informe operatorio o el informe del procedimiento. (Estos a veces no se encuentran en los portales electrónicos para pacientes, por lo que es posible que sea necesario solicitar una copia) 2. EDÚCATE SOBRE LA ENFERMEDAD: APRENDE A HABLAR “NET.” Ve la presentación "Tratamiento de Tumores Neuroendocrinos Avanzados" con la Dra. Jaydira Del Rivero Ve la presentación informativa "Qué esperar de una consulta con un experto de NET” por la Dra. Heloisa Soares del Instituto del Cáncer Huntsman. Ve el seminario web de LACNETS, "Secuencias de tratamientos de Tumores Neuroendocrinos *" con el Dr. Eric Liu, cirujano general y especialista Neuroendocrino del Rocky Mountain Cancer Center. Consulta los recursos para los recién diagnosticados* de NorCal CarciNET: Lista de verificación* para los recién diagnosticados. Consejos en video para los recién diagnosticado* por Josh Mailman, presidente de NorCal CarciNET. Consulta los valiosos recursos para los recién diagnosticados de Triage Cancer: Descarga la "Lista de verificación: Cómo organizarse ” Descarga la “Lista de verificación para evitar toxicidad financiera ” Descarga la "Derechos sobre el cáncer: lidiar con el empleo, el seguro médico y las finanzas " Descarga los folletos digitales proporcionados por la Allianza Internacional del Cancer Neuroendocrino (INCA). Al acceder esta pagina, selecciona “Español” en el submenú ubicado debajo de “Please choose your lenguaje” y presiona el botón “Go!” Lee estos 10 HECHOS* sobre los NETs. La Red Integral Nacional del Cáncer* (NCCN, por sus siglas en inglés) es una alianza de los principales centros oncológicos de Estados Unidos que desarrolla y publica las pautas de práctica actualizadas y basadas en evidencia llamadas Pautas de NCCN* . Estas pautas cuentan con el respaldo de Carcinoid Cancer Foundation, Healing NET Foundation, NCAN y NETRF. Debido a que estas se reconocen como el estándar en la atención del cáncer, es un recurso esencial para las conversaciones con tu equipo médico. También son una excelente referencia para cuando se deben hacer reclamaciones de seguros. Ordena la guía gratuita de Cáncer Neuroendocrino para Pacientes y Familiares* , publicada por NETRF. Ordena o descarga la publicación de The Healing NET Foundation, titulada “Navegando el Viaje del Paciente NET”*. Descarga esta guía completa para pacientes y familiares , cortesía de CNETS Canadá. (Disponible en Inglés y Francés) Únete a un grupo educativo o de apoyo de NETs* . Suscríbete a sus boletines para recibir las últimas actualizaciones sobre NETs y las próximas reuniones. Asiste a reuniones y conferencias educativas para establecer contactos con especialistas y otros pacientes. Suscríbete al canal de YouTube de LACNETS y ve videos de anteriores reuniones educativas en la extensa biblioteca de LACNETS en YouTube , en donde también podrás encontrar nuestra lista de videos en Español. Nota sobre la prognosis: Una pregunta muy común es: "¿Cuánto tiempo me queda para vivir?" Es común enterarnos de historias de pacientes a los que su médico les dijo que solo tenían unos meses de vida y que deberían de “poner sus asuntos en orden” En contraste, los especialistas en NETs a menudo dicen: "No sabemos cuánto tiempo tienes” Cuanto más aprendas sobre los NETs, más aprenderás que es muy difícil formular una prognosis. Los NETs son impredecibles y el caso de cada persona es único, por lo que suele ser difícil hacer una predicción. Además, muchas de las estadísticas que existen en la red no están actualizadas. Han habido muchos avances recientes en investigación de los NETs que han llevado a una detección más temprana y más opciones de tratamiento. Como resultado, los pacientes viven más tiempo con la enfermedad. Muchas personas dentro de la comunidad NET viven con esta enfermedad desde hace más de una década. 3. BUSCA APOYO Únete a un grupo de apoyo local y asiste a reuniones de educación para pacientes con NETs. A menudo escuchamos a la gente decir: "Pensé que era el único con esta enfermedad" Conectar con otros pacientes puede ayudarte a no sentir soledad. Lee historias inspiradoras* de otros pacientes con NETs o de las personas a cargo de sus cuidados. Conéctate con otro paciente para aprender de su experiencia. Haz clic aquí* para conectarte con otro paciente o con una persona a cargo de cuidados de pacientes con NETs. Busca y únete a un grupo de apoyo de NETs local. Son excelentes como recursos de apoyo y como fuentes de información y educación. Haz clic aquí* para obtener un directorio de grupos de apoyo de NET. Busca y suscríbete a un grupo de apoyo en línea. Haz clic aquí* y aquí* para obtener un directorio de grupos de discusión y apoyo en línea. CONSEJO: Los grupos de apoyo suelen ser una buena fuente de información acerca de reuniones educativas y recursos para los pacientes y sus familias. Podemos aprender mucho de las experiencias de los demás. Algunos pacientes incluso informan que encontraron a su(s) especialista(s) en NETs por medio de un grupo de apoyo. 3. BUSCA APOYO Estudios recientes (puedes leer algunos aquí* y aquí *) muestran que los pacientes con NETs que son atendidos por un equipo multidisciplinario, tienden a tener mejores resultados. Por lo general, los centros de atención especializada en NETs pueden diagnosticar y tratar los NETs de manera más rápida y precisa. Es mejor tener un enfoque multidisciplinario en el que un equipo de especialistas en NETs, con diferentes áreas de especialización, se reúne y revisa tu caso. Esto a menudo se lleva a cabo en una junta de tumores, donde cada caso es discutido y revisado por varios médicos, incluyendo oncólogos, endocrinólogos, gastroenterólogos, cirujanos, radiólogos, médicos nucleares y patólogos. (Dado que no se permite que los pacientes estén presentes en estas juntas, puedes ver aquí* el video de una junta de tumores simulada en una conferencia de LACNETS y darte una idea de cómo son) ONCÓLOGOS ESPECIALIZADOS EN NETS EN EL ÁREA DE LOS ÁNGELES: Dr. Randy Hecht UCLA (oficina de Santa Mónica), Oncólogo Médico (GI) 2020 Santa Mónica Blvd. Suite 600, Santa Mónica, CA Teléfono: 310-829-5471 Dr. Andrew Hendifar Cedars-Sinai, Oncólogo Médico 8700 Beverly Blvd, #LL North Tower, Los Ángeles, CA 90048 Teléfono: 310-423-2217 Dr. Daneng (Dan) Li City of Hope, Oncólogo Médico Co-director del Programa de Tumores Neuroendocrinos en City of Hope 1500 E. Duarte Road, Duarte CA 91010 (cerca de Pasadena) Teléfono: 800-826-4673 PARA ENCONTRAR UN ESPECIALISTA EN NETS FUERA DE LOS ÁNGELES: El Directorio de especialistas en NETs* publicado por Carcinoid Cancer Foundation es un buen lugar para comenzar. *CONSEJO: Muchos de los especialistas en NETs (incluyendo oncólogos, cirujanos, endocrinólogos, etc.) han sido oradores en conferencias y reuniones para pacientes con NETs. Puede ser útil buscar en los canales de YouTube o Vimeo de grupos como LACNETS , NorCal CarciNET y NETRF para encontrar videos de especialistas en NETs que puedas estar considerando para una segunda opinión. Puede ser útil "ver" al médico antes de tu cita. 5. DECIDE QUIÉN SERÁ TU MARISCAL DE CAMPO Los pacientes a menudo vemos varios médicos con diferentes áreas de especialización y a menudo obtenemos opiniones de varios expertos en NETs. Es importante encontrar a alguien en quien confíes, que sabes que va a escuchar y responder a tus inquietudes, que explique las cosas de una manera clara y sencilla y que conozca y aplique los tratamientos que necesitas. Debes encontrar a alguien con quien sientas que puedes trabajar y que sientas que está dispuesto a trabajar contigo. Una vez que hayas reunido a tu equipo médico, decide quién será el que dirigirá al equipo y estará a cargo de tomar las decisiones. 6. ASISTE A UNA CONFERENCIA DE EDUCACIÓN PARA PACIENTES CON NETS Los grupos de apoyo son una gran fuente de información para los pacientes con NETs. Algunos de estos grupos, incluyendo a LACNETS y a NorCal CarciNET, organizan conferencias anuales para pacientes y personas a cargo de sus cuidados. Las fundaciones de NETs como Carcinoid Cancer Foundation , HealingNET y NETRF también participan en conferencias educativas. Regístrate para recibir sus boletines y visita sus sitios web para conocer donde y cuando seran las próximas conferencias. Si bien algunas de estas conferencias se pueden ver de forma remota a través de transmisiónes en vivo y los videos de conferencias anteriores están disponibles en línea, vale la pena asistir a las conferencias en persona, ya que hay oportunidades para interactuar con especialistas, pacientes y otras personas de la comunidad. Próximas reuniones de LACNETS * Fundación del Cáncer Carcinoide * Fundación HealingNET * NCAN * NETRF * NorCal CarciNET * 7. RESPIRA PROFUNDO Haga clic aquí para leer la publicación completa. No olvides respirar. Toma un descanso. Recuerda que la razón por la que tratamos de educarnos es para VIVIR. Para la mayoría de nosotros, vivir con NETs es más un maratón que una carrera de velocidad. Algunas personas sienten que deben pasar cada minuto del día aprendiendo sobre la enfermedad para no perderse de algo que podría ser la diferencia entre la vida o la muerte. Para la mayoría de los pacientes con NETs eso, simplemente, no es asi. Además es igual de importante cuidar de nuestra salud emocional, mental y espiritual como lo es cuidar de nuestra salud física. Por lo tanto, si te sientes abrumado, es una buena idea tomar un descanso y hacer algo que te dé vida y que no esté relacionado con el cáncer. Disfruta de placeres o actividades simples como salir a caminar, ir a la playa, jardinería, ver una película, ir a un museo o un concierto, etc., y cuando te sientas revitalizado y descansado estarás listo para continuar tu educación y obtener más información sobre los NETs. Es sorprendente lo relajante y lo saludable que es el tomar un minuto de tiempo y respirar. (Haz clic aquí* para leer nuestra publicación titulada "Respira"). 1. El Cáncer Neuroendocrino también se conoce como Tumores Neuroendocrinos o NETs por sus siglas en inglés. Estas son las diversas terminologías que puedes encontrar: Neoplasia neuroendocrina (NEN): Es el término médico oficial que se ve a menudo en la literatura médica, como en la clasificación de NEN de la Organización Mundial de la Salud (OMS). NEN incluye tanto NETs como los Carcinomas Neuroendocrinos (NECs). NECs también se conocen como Cáncer Neuroendocrino de "alto grado". Los NECs se tratan de manera diferente a los NETs. Puedes encontrar más información específica de NECs aquí*. Carcinoide: Este es un término antiguo que significa “similar al cáncer” Este término está cayendo en desuso ya que no es preciso. Los NETs no son similares al cáncer, son cáncer. Aunque algunas veces pueden ser benignos (lo que significa que no se ha propagado desde donde se originó), la mayoría son malignos (lo que significa que se ha propagado a un lugar diferente al origen). Es posible que aún escuches que algunos médicos se refieren a los NETs que se originan fuera del páncreas, como en el pulmón o en el intestino delgado, como tumores carcinoides. Cáncer Neuroendocrino: Este es un término que es usado a menudo por las organizaciones de defensa de pacientes para referirse a las NENs (NETs o NECs), ya que crea conciencia sobre el hecho de que los NETs no son un tipo de Cáncer benigno, como se pensaba anteriormente. Otros términos que puedes escuchar se refieren al sitio del tumor primario (p. ej., PNET o NET pancreático) o la hormona que secreta el tumor (p. ej., Insulinoma o VIPoma). 2. Los NETs es tipo raro de Cáncer que afecta aproximadamente a 6.98 de cada 100.000 personas *. 3. Los NETs pueden afectar las células neuroendocrinas que existen en todo el cuerpo. Estas son células productoras de hormonas que se encuentran, más comúnmente, en el sistema gastrointestinal (estómago, intestino delgado, intestino grueso, recto), en los pulmones y en el páncreas. A menudo se propagan a los ganglios linfáticos, al hígado y a los huesos. Los tumores que se forman a causa de esta propagación reciben el nombre de Metástasis. 4. Los NETs son un Cáncer que es difícil de diagnosticar. Esto se debe a que no todas las personas con NETs tienen síntomas. Para aquellos que sí tienen síntomas (menos de la mitad de todos los pacientes con NETs), estos síntomas son vagos e incluyen bochornos, diarrea, náuseas, calambres abdominales, inflamación abdominal, gas y dificultad para respirar. 5. Algunos pacientes con NETs tienen síntomas. (Pero no todos.) Por lo general, solo los pacientes que tienen tumores productores de hormonas, llamados tumores funcionales, tienen síntomas. Estos síntomas se denominan Síndrome Carcinoide. 6. La causa es desconocida. Muchas personas a menudo se preguntan si hicieron algo para causar su cáncer. La respuesta es no. Aunque hay algunos tipos de NETs que tienen un vínculo genético, la mayoría no tiene una causa conocida. 7. Es muy importante buscar la atención de un especialista en NETs. La mayoría de los diagnósticos de Cáncer Neuroendocrino no los hace un especialista en NETs. La mayoría de los pacientes terminan buscando una segunda opinión con un especialista en NETs, teniendo a veces que viajar fuera del área en la que viven. Debido a que los NETs son raros, no todos los médicos tienen el conocimiento adecuado de la enfermedad, ni de los avances recientes en diagnostico y tratamiento. Un especialista en NETs puede ayudarte mejor a guiar tu plan de tratamiento. El especialista en NETs puede trabajar con tu médico para controlar tus síntomas, la enfermedad y recomendar los tratamientos más adecuados. De acuerdo con una encuesta hecha a gran escala con pacientes con NETs, aquellos que reciben atención en un centro especializado en NETs se sienten significativamente más satisfechos con su tratamiento y están mejor informados sobre las diferentes opciones de tratamiento que aquellos que no visitan centros especializados en NETs. *Original site translated by Michel DeQuevedo from NET Mexico (@NETs Mexico). 7 HECHOS ACERCA DE LOS NETs

Join our free virtual coaching sessions tailored for neuroendocrine tumor patients and their caregivers to enhance your wellness journey. Health Coaching for Neuroendocrine Tumor Patients and Caregivers The coaching process was remarkably beneficial! When my cancer load increased, and the painful and disruptive symptoms undermined my resiliency and quality of life, my coach helped me set new goals and manifest them one by one. From exercise and meditation to dietary changes, these lifestyle corrections vastly improved my health and well-being during a difficult time. I could not have accomplished so much without it! — NM (NET patient) WHAT IS WELLNESS COACHING? Wellness coaching is an opportunity for individuals to invest time and energy in self-care by going through a personal journey of change with a health coach as a guide. To be clear, coaching is not about seeking or receiving medical advice, nor is it therapy. The role of the health coach is not to give advice, prescribe a plan, or tell the client what to do. Wellness coaching is not about obtaining information about NET. (For NET-specific information and resources, visit our resources page.) Instead, health coaching is a personal journey of making positive behavioral change toward self-care with a coach as a guide. Health coaching is not intended to specifically address the medical aspects of the NET journey. The focus is not on disease management or treatment but rather, the focus is on improving one’s quality of life. The coach guides the client in defining and clarifying his/her own health and wellness goals and helps the client move toward those goals in an incremental, manageable way. “Health (Wellness) Coaching helped me move through a very difficult time in my journey with cancer. It was the support I needed to regain my energy and motivation. I recommend Health (Wellness) Coaching to anyone who wants to build physical, mental and/or emotional strength while struggling with illness.” — Mary Zoeller (NET patient) While the NET journey may be unpredictable with factors outside of the patient’s control, the client can choose to work on lifestyle choices within one’s control that may include nutrition, movement, sleep/rest, mind-body connection, spirituality, environment, or relationships, just to name a few. Through this process, the client gains the knowledge, skills, and confidence to make lasting and positive behavioral choices. A health and wellness coach (or simply “health coach”) can serve as a guide on your journey. By partnering with a health coach, you experience the powerful message that you are not alone. Connecting with a coach and with a deeper community of past, current, and future fellow travelers through groups such as the Neuroendocrine Cancer Foundation cultivates and inspires resilience. These experiences positively influence the traveler’s narrative to create one of resilience. My health (wellness) coach has given me a life jacket. My coach, like the life jacket, kept my head above the uncertainty and sometimes murky waters of cancer. Doctors work diligently to save our bodies, my health coach works diligently to save our lives. She is giving us the tools, to not just live in cancer, but to THRIVE through cancer. — Beth DeBlase (NET Patient) HOW DOES IT WORK? Interested parties can click here to find out more information. NCF offers a series of one-on-one telephonic coaching sessions (8-10 total) to NET patients and caregivers within the United States who are motivated to invest in their own self-care. Coaching sessions occur weekly or biweekly for approximately 3-5 months. The first 8 sessions are FREE OF CHARGE TO THE CLIENT. Two additional optional sessions are offered at a reduced cost. Session structure: Session #1: Review the client’s current state of health. Session #2: Future visioning and setting 3-6 month goals. Sessions #3-10: Work toward 3-6 month goals incrementally. Note: This program is currently available for U.S. residents only. Limited spaces available. Applicants will be taken on a first-come basis. Sign up for Wellness Coaching The Neuroendocrine Cancer Foundation Wellness Coaching Program was featured in a case study that focused on the effects of health and wellness coaching with an adult cancer caregiver. The key finding showed that health coaching proves to be a viable option for supporting caregivers in the multiple physical, psychological, and emotional challenges they face. Check out the full study published in "The Permanente Journal.” Health coaching helped me identify my roadblocks, pointed me in the right direction for valuable resources and tools, opened new doors, and provided me with action steps to help me make the changes I wanted to make. Thanks to health coaching, I have become a healthier and happier person. — Pam Wagner (NET patient) WHO ARE THE WELLNESS COACHES? National Board for Health and Wellness Coaching (NBHWC), the credentialing organization for Health and Wellness Coaches, defines them as coaches who “partner with clients seeking self-directed, lasting changes, aligned with their values, which promote health and wellness and, thereby, enhance well-being. In the course of their work health and wellness coaches display unconditional positive regard for their clients and a belief in their capacity for change, and honoring that each client is an expert on his or her life, while ensuring that all interactions are respectful and non-judgmental.” Our health coaches have completed a NBHWC-approved health and wellness coaching program and demonstrated the knowledge, tasks, and skills essential to the practice of health and wellness coaching. Our coaches have passed the new Health and Wellness Certifying Exam, recognized by the National Board of Medical Examiners, earning the title of National Board Certified Health & Wellness Coach (NBC-HWC). Our coaches are graduates of the Vanderbilt Health Coaching Program under the direction of Ruth Wolever who serves on the National Board for Health and Wellness Coaching , the team that developed and created national standards, and formed a partnership with the National Board of Medical Examiners in May 2016 to launch a National Board Certification for Health & Wellness Coaches in 2017. While health coaches may be medical professionals, their function is solely that of health coach. This means although a health coach may know a great deal about health, in this role, their greatest expertise is in the process of sustainable change. This relationship is different from relationships that clients may have with their healthcare providers. It is not prescriptive in nature. Health coaches are not here to give advice, prescribe a plan, or tell their clients what to do. Instead, they serve as a guide in the client’s journey. Through this process, the client gains knowledge, skills, and confidence to make lasting and positive behavioral changes. I have been blessed to receive care from world class doctors and nurses at centers of excellence for Neuroendocrine cancer. Now I realize that the very best medical and pharmaceutical expertise is vastly enhanced by qualified Health Coaching, which addresses the emotional and motivational components of managing a life-threatening disease. — NM (NET patient) Webinar: Thriving with NETs - How Health & Wellness Coaching Can Help You OUR COACHES LEEANN HAYS RN, NBC-HWC (CST) Location: Nashville, TN Leeann Hays is a Registered Nurse and a Nationally Board-Certified Health and Wellness Coach. Her past nursing experience were in neurology, neurosurgery, and neuro-intensive care at the Vanderbilt University Medical Center. She later spent years in the pharmaceutical industry learning to network and connect with physicians. Her passion to help others also led her to volunteer with women who were victims of abuse and addiction and help them find healthier alternatives. Leeann chose to become a health coach through Vanderbilt University’s Health Coaching Program because she strongly believes that a person’s well-being is more than the absence of disease and that the heart is capable of holding both suffering and joy. Her area of expertise is in supporting positive behavior change through small, forward steps towards a more fulfilling and happy life. Her interest in the Neuroendocrine Tumor population is to care, connect, and empower patients to discover ways to cope and thrive. Leeann believes that NET patients have the power and ability to use their inherent strengths to improve the quality of their life through self-care. Leeann enjoys spending time partnering with clients to customize and discover what brings unique value and meaning to each person’s life. JULIE OIJALA RN, NBC-HWC Julie Oijala is a Registered Nurse with over 18 years of nursing experience in hospital pediatrics, surgery, intensive care, outpatient clinic, and school nursing including with medically fragile children. She has also monitored vaccine clinical trials as a Clinical Research Associate for the pharmaceutical industry. Julie received her Bachelor of Science in Nursing degree from CSU Fresno. Later she continued studying in Finland, receiving her nurse licensure and certification in Perioperative Nursing. Having lived overseas for more than 20 years through challenging and amazing times, Julie believes it has given her ‘sisu’, a Finnish concept described as bravery, resilience and hardiness. Julie’s interest in holistic health and well-being sparked her curiosity in health coaching. During her training for the Vanderbilt Health Coaching Program, she had the opportunity to coach a few clients with cancer, including neuroendocrine cancer. She is excited to provide health coaching to the NET population so they can realize their internal strengths to find forward momentum with their health and their life. She believes in the importance of the ‘here and now’ and the interconnectedness of body, mind and spirit. Julie loves the outdoors, yoga and being a life long learner. She helps as a caregiver for her elderly parents and enjoys visiting family around the world. KATHERINE SMITH NBC-HWC (EST) Location: Maryland Katherine Smith has been in the field of integrative health and wellness for over 25 years and is passionate about empowering clients to attain their highest possible quality of life. As a health coach, educator, trainer, and mind-body researcher she has delivered health-focused programs and services to children, patients, healthcare clinicians, medical and nursing students, members of the military, corporate executives, and Members of Congress and their staff. She is particularly excited to work as a health coach with the NET population after seeing her mother go through rigorous treatment for Stage 4 metastatic breast cancer and slowly rebuild a vibrant life. Katherine is faculty in the coaching department at the Maryland University of Integrative Health (MUIH) in Laurel, MD, where she teaches behavior change, motivational interviewing, positive psychology and principles of self-care. Katherine is also a longtime meditator and mindfulness instructor, teaching meditation and mind-body skills at the Georgetown University School of Medicine, George Washington University Milken School of Public Health and through MINDS Inc., a local organization that brings mindfulness into public and private schools in the local area. Katherine received her Master of Public Health (MPH) degree from the University of Michigan in 2003 and a Bachelor of Science in psychology from Duke University an 1987. Most recently, Katherine completed the Vanderbilt University’s Health Coaching Program and became one of the first National Board Certified Health & Wellness coaches in the country. An avid reader, runner, and outdoor enthusiast, Katherine lives in Arlington, VA with her husband and two daughters. PROGRAM ADVISOR RUTH Q WOLEVER PhD, NBC-HWC (CST) Location: Tennessee Ruth Q. Wolever, PhD, NBC-HWC serves as Interim Director of the Osher Center for Integrative Medicine at Vanderbilt and the Director of Vanderbilt Health Coaching . She is an Associate Professor of Physical Medicine & Rehabilitation at Vanderbilt University Medical Center, with secondary appointments in the Department of Psychiatry & Behavioral Sciences and the Vanderbilt University School of Nursing, and an Adjunct Associate Professor at Meharry Medical College. Ruth is the Chief Science Officer for eMindful, Inc. , is a founding member and was the inaugural President of the National Board for Health and Wellness Coaching . A clinical health psychologist and nationally-board certified health and wellness coach (NBC-HWC) , Ruth has over 25 years of experience training and mentoring medical and allied health professionals in behavioral medicine, emotional health and coaching. She also has over 25 years of experience designing, implementing, and evaluating behavior change programs for medical patients and those at risk for chronic disease. Internationally recognized for her expertise on mindfulness and health coaching, Ruth studies mindfulness-based approaches to self-regulation and lifestyle change. Her research has been funded by the National Institutes of Health (NCCAM – now NCCIH, Office of Women’s Health, NHLBI, NIDCD, and NIDDK), the United States Air Force, Centers for Medicare and Medicaid Services, industry, and philanthropy. Ruth is particularly interested in the intersection of mindfulness, behavior change, and inter-professional training. I would recommend the Health & Wellness Coaching program for anyone looking for an avenue to deepen their self- introspection and awareness, their personal gratitude and their relationship with themselves and in turn others in their lives.” Health (Wellness) Coaching provided me with the motivation to concentrate on the aspects of my life that have been adversely affected by my health situation. My goal was to learn to manage the psychological, social and personal struggles associated with my PNET in a more productive and positive way. The Health Coaching Program did just this. — Mary Donlevy (NET patient) Health coaching helped me to see that I have the tools within me to navigate the tough days with this disease. I learned HOW to use these tools. I am in control of my life even with stage 4 cancer. Living and loving each day to the fullest is much easier when you can bring yourself back to the moment and be in the now. Health coaching taught me to do this. I highly recommend this process for anyone facing uncertainty. — NET Patient FORMS TO DOWNLOAD Health Coaching Agreement Intake Form Wheel of Health Health Coaching Survey Recording authorization (optional) HIPAA Release (optional) Sign up for Wellness Coaching Click Here to Read More About Wellness Coaching

Surgery < Back to Topics Play Video Play Video 17:02 6. Navigating Surgery • Dr. Julie Hallet • Sunnybrook Health Sciences Centre • 2026 Conference In this session from the Neuroendocrine Cancer Foundation’s 2026 Virtual Annual Patient Conference, Dr. Julie Hallet, surgical oncologist and associate professor of surgery at Sunnybrook Health Sciences Centre and the University of Toronto, presents “Navigating Surgery for Neuroendocrine Tumors.” Dr. Hallet explains how surgery may be considered across the neuroendocrine tumor care journey, from local regional disease to metastatic disease and recurrence. She discusses when surgery may be used with curative intent, when it may help provide long-term disease control or symptom relief, and why treatment decisions should be tailored to the tumor type, disease extent, tumor biology, symptoms, and each patient’s goals. This presentation also covers topics such as small pancreas neuroendocrine tumors that may be safely monitored, mesenteric-sparing surgery for small bowel NETs, surgery for liver metastases, carcinoid syndrome considerations, preoperative preparation, postoperative recovery, long-term monitoring, quality of life, and the importance of receiving care from a multidisciplinary neuroendocrine tumor team. Learn more about the Neuroendocrine Cancer Foundation and access patient resources at www.NCF.net. For more information about this conference, visit https://www.ncf.net/events/2026conference This video is for educational purposes only and is not a substitute for professional medical advice. Please consult your medical team with questions about your individual care or treatment. #NeuroendocrineCancer #NeuroendocrineTumors #NETCancer #NETs #CancerSurgery #SurgicalOncology #JulieHallet #Sunnybrook #UniversityOfToronto #LiverMetastases #CarcinoidSyndrome #MultidisciplinaryCare #NCF #PatientConference #CancerEducation Play Video Play Video 21:19 2. Role of Surgery in NETs • Dr. Jashodeep Datta • 2025 NET Cancer Day Symposium Dr. Jashodeep Datta speaks about the "Role of Surgery in NETs" at the 2025 NET Cancer Day Symposium. The 2025 NET Cancer Day Symposium was a collaboration between the Neuroendocrine Cancer Foundation and the Sylvester Comprehensive Cancer Center, part of UHealth – University of Miami Health System, in Miami, Florida, on Sunday, November 9th. #netcancer #neuroendocrinecancer #netawareness #rarecancer #cancercommunity #advocacy #ncf #lacnets #AboveAndBeyondAward #netcancerday #cancereducation #netsupport Play Video Play Video 19:04 "What to Ask your Surgeon & How to Prepare for Surgery" • Alexandra Gangi, MD • 2024 NET Cancer Day Hear Dr. Alexandra Gangi speak at the 2024 NET Cancer Day Symposium Play Video Play Video 46:13 Episode 27: What to Know About Neuroendocrine Tumor Liver Metastases ABOUT THIS EPISODE What do you call NETs in the liver? How often do NETs spread and what causes NETs to spread? How do you determine if surgery is an option? Dr. Xavier Keutgen from the University of Chicago brings clarity to NET tumors found in the liver and describes how surgery fits in with other treatments for metastatic NETs. MEET DR. XAVIER KEUTGEN Xavier M. Keutgen MD is a board-certified, double-fellowship trained surgeon who specializes in the treatment of gastro, entero, pancreatic neuroendocrine tumors and neoplasms of the thyroid, parathyroid and adrenal glands. A native from Belgium, Dr. Keutgen graduated magna cum laude from the University of Heidelberg Medical School in Germany and completed a general surgery residency and surgical oncology research fellowship at New York Presbyterian Hospital-Weill Cornell Medical Center. He then completed a hepato-pancreato-biliary fellowship at the University Hospital of Zurich in Switzerland as well as an endocrine oncology and surgery fellowship at the National Cancer Institute, National Institutes of Health (NIH) in Bethesda, Maryland. Dr. Keutgen currently serves as the director of the Neuroendocrine Tumor Program, director of the Endocrine Research Program and co-director of the Von Hippel-Lindau Clinical Care Program at the University of Chicago Medicine. Throughout his career Dr. Keutgen has developed a particular interest in clinical, translational and basic science research. His laboratory specializes in investigating the role of radiation therapy and DNA damage repair in pancreatic, lung and small bowel neuroendocrine tumors, discovering new actionable molecular targets for neuroendocrine tumors, and elucidating new mechanisms of drug delivery for endocrine malignancies. TOP TEN QUESTIONS 1. What is liver NETs? How often do NETs spread? Is it expected that NETs will eventually spread? 2. If the primary tumor was already removed, do you now call this liver NET or do you still refer to it by the primary site of origin – and why? How is this different from liver cancer? 3. What causes NETs to spread? Is there anything that is done to cause NET tumors to spread? Is there anything that can be done to keep them from spreading? 4. How do you determine if surgery is an option? What is involved in evaluating metastases? What scans or labs are needed? 5. How do you decide what the “tumor burden” is? 6. How do you weigh the grade or ki67? How do you weigh tumor size? Is there a cut-off for tumor size or the number of tumors that is too much to operate? 7. How does one decide between surgery versus other options? How often can surgery or other treatments be done? How safe is liver surgery? 8. How do you approach surgery for someone with liver tumors who also has tumors in the tail versus the head of the pancreas? 9. When someone has had a Whipple surgery and later is found to have tumors in the liver, what are the options? 10. What advances in the field are you most excited about? For more information, visit https://www.lacnets.org/podcast/27. Play Video Play Video 01:35:06 "Evolving Management of NET Liver Metastases" Dr. Gagandeep Singh • 2024 #LACNETS Educational Event Join us to hear renowned liver and pancreas surgeon Dr. Gagandeep “Gaugs” Singh discuss the evolving algorithms in the management of NET liver metastases. Dr. Singh, Chief of Surgical Oncology at City of Hope® Cancer Center in Phoenix, asks the question of whether it is prudent to be aggressive surgically or if it is all about timing and strategy. For more information, visit LACNETS.org. Play Video Play Video 20:38 "Surgical Treatments" • Alexandra Gangi, MD • 2023 NET Cancer Day Symposium @NCFCancer "Surgical Treatments" • Alexandra Gangi, MD • 2023 NET Cancer Day Symposium • Santa Monica, CA Speaker: Alexandra Gangi, MD Surgical Oncologist Cedars-Sinai For more information, visit LACNETS.org. Play Video Play Video 17:28 "Understanding Carcinoid Crisis" with Dr. Julie Hallet • 2024 #LACNETS Patient Conference 6) Understanding Carcinoid Crisis • 2024 Neuroendocrine Tumor Patient Conference Our 2024 LACNETS Neuroendocrine Tumor Patient Conference is designed for neuroendocrine cancer (NET) patients and caregivers to deepen your understanding of NETs. Whether you are newly diagnosed or have been living with NET for many years, we encourage you to attend: - Learn from top NET experts from across North America on a range of topics relevant to the NET patient journey. - Topics include work-ups, scans, surgery, carcinoid crisis, liver-directed therapy, PRRT, systemic treatments, treatment sequencing, NET guidelines, and clinical trials. - Gain insight into NET decision-making through the NET tumor board panel discussion. - Hear stories from NET patients and caregivers. - Join virtually, where you can pause, rewind, or replay. - There is no cost to attend. This event is made possible by the generosity of donors and sponsors. #LACNETS #neuroendocrinecancer #clinicaltrials #lungcancer #NETcancer #Letstalkaboutnets For more information, visit LACNETS.org. Play Video Play Video 16:01 "Understanding Surgery for Liver NETs" with Dr. Clarke •2024 Neuroendocrine Tumor Patient Conference 5) Understanding Surgery for Liver NETs • 2024 Neuroendocrine Tumor Patient Conference Our 2024 LACNETS Neuroendocrine Tumor Patient Conference is designed for neuroendocrine cancer (NET) patients and caregivers to deepen your understanding of NETs. Whether you are newly diagnosed or have been living with NET for many years, we encourage you to attend: - Learn from top NET experts from across North America on a range of topics relevant to the NET patient journey. - Topics include work-ups, scans, surgery, carcinoid crisis, liver-directed therapy, PRRT, systemic treatments, treatment sequencing, NET guidelines, and clinical trials. - Gain insight into NET decision-making through the NET tumor board panel discussion. - Hear stories from NET patients and caregivers. - Join virtually, where you can pause, rewind, or replay. - There is no cost to attend. This event is made possible by the generosity of donors and sponsors. #LACNETS #neuroendocrinecancer #clinicaltrials #lungcancer #NETcancer #Letstalkaboutnets For more information, visit LACNETS.org. Play Video Play Video 41:04 Episode 17: Key Considerations for NET Surgery ABOUT THIS EPISODE How do surgeons decide the type, extent, and approach of NET surgery? NET surgeon Dr. Alexandra Gangi of Cedars-Sinai answers 10 common questions about what to expect before, during, and after NET surgery. Gain insight on preparing for surgery and what is important for your surgeon to know about your recovery goals. Dr. Gangi’s comprehensive approach illustrates why surgeons are an integral part of your NET medical team. MEET DR. ALEXANDRA GANGI Dr. Alexandra Gangi is a board-certified surgical oncologist at Cedars-Sinai Medical Center in Los Angeles. Dr. Gangi completed a general surgical residency at Cedars-Sinai and completed her surgical oncology fellowship at the H. Lee Moffitt Cancer Center in Tampa, Florida. She currently serves as the director of the Gastrointestinal Tumor and Cancer Regional Therapies Programs with specialization in Pancreatic and GI Neuroendocrine tumors, Metastatic colorectal cancer, and Peritoneal Surface Malignancies. Her research focuses on understanding GEPNET heterogeneity between and within tumors subtypes and mechanisms of chemotherapy induced liver injury. TOP 10 QUESTIONS 1. How do you decide if the tumors can and should be cut out? How does tumor location, tumor size, and amount of tumors factor into your decision? 2. How do you decide if someone should have a laparoscopic surgery versus open surgery? What about robotic surgery? 3. How do you decide whether or not to remove the ileocecal valve? 4. What work up should NET patients have before surgery? Should all NET patients have an echo? 5. What is the risk of carcinoid crisis with a dental procedure, a biopsy, or with surgery? How do you manage this? 6. Should NET patients be on somatostatin analogs before surgery? What about after surgery? If so, when would you restart it? 7. When would you want someone on chemotherapy or PRRT to shrink a tumor before surgery? When might you want to do surgery first followed by another treatment? 8. When would you recommend imaging after NET surgery? What type of imaging would you order? 9. Why are there differing opinions from NET specialists, specifically about surgery and what treatment should be offered as the next option? 10. What questions would you recommend NET patients ask at their surgical consultation? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast17. Play Video Play Video 39:43 Episode 3: Surgery for NETs ABOUT THIS EPISODE To cut or not to cut? A crossroad many neuroendocrine cancer patients are faced with along their journey. NET surgeon Dr. Gagandeep Singh of City of Hope answers the top 10 surgery questions for NETs. MEET DR. GAGANDEEP SINGH Gagandeep Singh, M.D., is an internationally recognized liver and pancreas surgeon. He is head of hepatobiliary and pancreatic surgery service City of Hope, a National Cancer Institute-designated comprehensive cancer center. He is also the surgical director of the Neuroendocrine Tumor Program and is the lead for the gastrointestinal disease team. He started his faculty academic career at Keck School of Medicine of USC in Los Angeles. From there, he was appointed as director of the Liver and Pancreas Center at the John Wayne Cancer Institute, Santa Monica, California, where he also served as chair of the Cancer Committee and vice president for Fellowship Education. In 2010, City of Hope asked Dr. Singh to spearhead the liver and pancreatic cancer program. He was appointed clinical professor of surgery and as the new chief of the Division of Surgical Oncology (2011 to 2019) and hoisted the program to national recognition. He has an extensive referral base that reflects peer recognition of his clinical acumen and surgical expertise and is listed in “America’s Top Surgeons,” “Best Doctors of America,” “Super Doctors” and “Top Doctors of America.” TOP 10 SURGERY QUESTIONS 1. Should all NET patients have surgery? How do I know if I’m a candidate for surgery? If 1 surgeon says I’m not, would another surgeon say something different? 2. How much control would a patient have regarding the approach and extent of surgery? 3. How do you control for carcinoid crisis during surgery? 4. Should all NET patients have their gallbladder removed? If mine wasn’t removed in my initial surgery, would you recommend going back to have it taken out? 5. If there are already liver mets, would you recommend having surgery? If so, how much should be taken out? Is there a role for taking out the primary tumor when there are liver mets? 6. Is there a role for surgery if there are bone mets? 7. What is the role of liver transplantation? 8. What are the risks of scar tissue from multiple surgeries? What can be done about it? (how many surgeries can a body handle?) 9. What is the role of adjuvant therapy for net? (Please also explain what adjuvant therapy is.) 10. What treatment or other development in this field are you most excited about? (What hope might you offer to those living with NET or their loved ones?) For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast3. Play Video Play Video 01:25:46 "Surgery: The What, Where & When" with Dr. Eric Liu • LACNETS • July 2023 Join LACNETS to hear NET expert Dr. Eric Liu of Rocky Mountain Cancer Centers discuss “Surgery: The What, Where & When.” To learn more, visit LACNETS.org. Play Video Play Video 27:33 A Conversation with Three NET Surgeons • Dr. Clarke, Dr. Gangi & Dr. Anaya • 2023 LACNETS Conference Watch 'A Conversation with Three NET Surgeons' featuring Dr. Callisia Clarke, Dr. Alexandra Gangi and Dr. Daniel Anaya Saenz. This presentation is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 07:53 Patient Story: How to Prepare for Surgery NET patient Julie’s “show and tell” of tips, tricks, and specific items she found useful during her hospital stay and recovery at home Click here for a list of the items Julie mentioned in this video: bit.ly/3vEenQf Read our blog post, 'Practical Tips for Patients Preparing for Surgery" here: bit.ly/3Ac0xHF For more information on LACNETS, visit www.LACNETS.org. Play Video Play Video 15:22 05. NET Surgery: Making Decisions & Preparing for Surgery (Dr. Clarke) - 2022 LACNETS Conference Dr. Callisia Clarke addresses surgery for neuroendocrine cancer including decision-making & preparing for surgery. Presenter: Callisia Clarke, MD Surgical Oncologist Medical College of WI 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 01:42:11 LACNETS - "Surgical Resection/Cytoreduction -The Best Treatment Option for GI NETs" Dr. Yi-Zarn Wang "Surgical Resection/Cytoreduction - The Best Treatment Option for GI NETs - Why? & How?" Speaker: Yi-Zarn Wang, DDS, PC, MD, FACS Surgical Oncologist, Chairman of the NET Research & Treatment Center, Sammons Cancer Center, Baylor University Medical Center Play Video Play Video 34:00 Surgery - Liver + Pancreas: Kambiz Kosari, MD, FACS - 2019 LA NET Conf Surgery - Liver + Pancreas: Kambiz Kosari, MD, FACS Kambiz Kosari, MD, FACS Surgeon, Cedars-Sinai Medical Center 2019 Annual Los Angeles NET Patient Education Conference Saturday, June 8th www.LACNETS.org Play Video Play Video 17:47 Surgery - GI: Farin Amersi, MD - 2019 LA NET Conf Surgery - GI: Farin Amersi, MD Farin Amersi, MD Surgical Oncology, Cedars-Sinai Medical Center 2019 Annual Los Angeles NET Patient Education Conference Saturday, June 8th www.LACNETS.org Play Video Play Video 01:16:51 LACNETS - "Defining Order Beneath the Chaos - Living with NET Liver Metastases" (City of Hope) LACNETS - "Defining Order Beneath the Chaos - Living with NET Liver Metastases" with Dr. Gagandeep Singh (City of Hope) SPEAKERS: Gagandeep Singh, MD, FACS, Liver & Pancreatic Surgeon, City of Hope Daneng (Dan) Li, MD, Medical Oncologist, City of Hope Date: Saturday, March 9th, 2019 Location: City of Hope (Duarte, Calif.) To learn more about LACNETS, please visit www.LACNETS.org. Play Video Play Video 24:29 2018 LA NET Conf 04 - Surgical Management : Girgis, Agopian Surgical Management: Girgis, Agopian Mark Girgis, MD Assistant Professor of Surgery at the David Geffen School of Medicine, UCLA Health Vatche G. Agopian, MD Assistant Professor of Surgery, Department of Surgery, David Geffen School of Medicine at UCLA Play Video Play Video 42:50 Finding a NET Expert + Surgery for NETs - 2020 LACNETS Virtual NET Conference Virtual 2020 Los Angeles Neuroendocrine Tumor Patient Education Conference Presented by LACNETS Presentations & Times: LACNETS Conference Welcome (0:00 - 5:44) Lindsey Jeu De Vine, Director of Communications, LACNETS Lisa Yen, NBC-HWC, Program Director, LACNETS "Finding a NET Expert" (5:44 - 22:25) Cindy Lovelace , Executive Director Healing NET Foundation "Surgery for NETs" (22:25 - end of video) Alexandra Gangi, MD , Surgical Oncology Cedars-Sinai Medical Center For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 15:08 05. To Cut or Not to Cut? Surgery for NETs (Dr. Clarke) - 2021 LACNETS Virtual Conference 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Presenter: Callisia Clarke, MD Surgical Oncologist Medical College of WI For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. < Back to Topics Next Topic >

Patient & Caregiver Stories Watch inspiring stories of strength and resilience from patients and caregivers. Jesse & Ellen, a NET patient & caregiver, share their story of living with Carcinoid Heart Disease. Kimberly, a NET patient, shares her NET journey at the 2025 Regional NET Patient Conference in Arizona. NET Caregiver Samantha shares her story at the 2024 NET Cancer Day Symposium. NET Patient Dorinda shares her story at the 2024 NET Cancer Day Symposium. NET Patient Karla shares her inspiring story in "Falling Flat on my Faith." NET Patient Ilka and her son Shane share their inspiring journey. NET Patient, Beth, shares her inspiring story of strength and resilience titled “A Shared Experience.” NET Patient Kelli shares how she has learned not just to survive, but also to thrive. NET patient, Eric, shares about his journey and decision-making. NET Patient, Kelli Edwards, shares her experience with PRRT. NET patient, Shaunie, & her daughter/advocate, Heather, share about their experience with PRRT. NET patient, Mary, shares about "scan-xiety," the common anxiety patients sometimes have when undergoing scans. NET Patient, Cindy, shares about her journey living with high grade neuroendocrine cancer. NET Patient, Vivian shares her experience with the LACNETS health coaching program. NET Patient, Laurie, shares about the first year of her NET journey. NET Patient, Tom, shares his experience with PRRT. NET Patient, Brent, shares about symptom management. NET Patient, Cindy, shares how she is thriving as a NET patient. NET Patient, Mary, shares about her experience in a clinical trial (everolimus or Afinitor). NET Caregiver, Jack, shares about his experience as a caregiver to his wife who is living with NET. NET Patient Cindy who is living and thriving with high grade neuroendocrine cancer shares her inspiring story. NET Caregiver Aimee shares what led her to a life of patient advocacy and assisting patients living with pheochromocytomas and paragangliomas. NET Patient Tom shares his experience undergoing multiple rounds of PRRT treatments. NET Caregiver Gilda shares how she has been supporting her husband living with NET NET patient Michel shares how the lack of information and awareness of his diagnosis inspired him to start a patient support group in Mexico. NET Patient Julie shares her path to treatment in hopes of providing guidance to newly-diagnosed patients. NET Patient Denny shares his story of being diagnosed with high grade (grade 3) NET and experience with PRRT. NET Patient Federico shares his story. NET expert Dr. Mark Lewis shares how he was diagnosed with NET and how he has been navigating the patient journey. NET patient Shaunie shares her experience living with Zollinger-Ellison syndrome and a functioning gastrinoma of the pancreas. Visit Our YouTube Channel

Take some time to enjoy the changing seasons at our Autumn Virtual Wellness Retreat* on Saturday, September 26th, 2026, from 8:15 AM to 12:15 PM Pacific Daylight Time. The theme of the retreat is "Transformation." REGISTRATION CLOSED Embracing transformation together through gentle yoga, guided meditation, & art therapy. Autumn Virtual Health & Wellness Retreat: Take some time to enjoy the changing seasons at our Autumn Virtual Wellness Retreat* on Saturday, September 26th, 2026, from 8:15 AM to 12:15 PM Pacific Daylight Time. The theme of the retreat is "Transformation." REGISTRATION closes September 16th 2026. Navigating life with neuroendocrine cancer—whether as a patient or a supporter—can often feel overwhelming and isolating due to the unique challenges of this rare condition. This retreat offers a welcome opportunity to step away and center your focus beyond the diagnosis. This supportive, interactive experience brings together gentle movement, mindfulness, and creative expression. Together, we will explore the meaningful personal transformations—emotional, mental, social, and behavioral—that emerge along the way. The retreat will take place on Zoom (a two-way stream), meaning everyone will be able to see and interact with one another during the activities. Retreat Activities: Chair Yoga with Julie Wolinsky: Gentle and accessible yoga for all levels, focusing on breath and movement. Therapeutic Art with Angie Madama: Transform & express your creative curiosity through a guided artwork creation. Guided Meditation with Ruth Q. Wolever, PhD, NDC-HWC: Be mindful and tranquil during a guided meditation session. Reflections, Connections & Sharing facilitated by Victoria Ramirez ACHP-SW This special event* is offered at no charge to neuroendocrine cancer patients and caregivers. *Limited spots are available. *Please note that registration does not guarantee a reserved spot. To help prepare for the art therapy session, please ensure you reply to emails from Heather Davis at Heather@NCF.net . Participants attending from outside the United States will require special accommodations. Registration closes 9/16/26. If your plans change and you are unable to attend, kindly provide at least 72 hours' notice. . MEET THE INSTRUCTORS & FACILITATORS Julie JULIE WOLINSKY Registered Yoga Teacher Julie Wolinsky is an Experienced-Registered Yoga Teacher who has taught a variety of in-person and online yoga formats, including Chair Yoga, Vinyasa Flow Yoga, Yoga with Weights and Cardio, and Yin Yoga, for nearly ten years. Passionate about helping others to live their healthiest and happiest lives, Julie has taught yoga to cancer patients, senior citizens, those in wheelchairs, as well as professional athletes and teenagers. She is certified in Reiki Second Degree Natural Healing, and is an ICF certified professional coach. With a MBA from Harvard Business School, her professional background is in international development, business strategy and entrepreneurship, and includes living and working in Spain and Latin America. She loves languages and has taught yoga in Spanish and Farsi. As someone who has also navigated cancer and treatment herself, Julie brings a personal understanding of the importance of movement, mindfulness, and connection during challenging times. Her experience has deepened her belief that movement and mindfulness can be powerful tools for supporting physical and emotional well-being. ANGIE MADAMA Founder, Reach HeART Angie Madama founded Reach HeART in March 2020, when the pandemic began, originally offering art lessons for kids through Zoom that combined her love of the arts with mindfulness — what she prefers to call "presentfulness." Her intention was to create a space that felt safe to create in, both physically and emotionally, while offering an outlet for social connection and a sense of being tied to community through art. Since then, Reach HeART has grown alongside Angie herself. At the heart of her work now is a simple but powerful idea: some of our deepest truths aren't things we're taught, but things we already carry and simply need a way to access. She builds projects around intangible concepts and creates a guided space for participants to discover what these concepts mean through their own lens, with art as the vehicle. What emerges is a tangible, one-of-a-kind piece of art that reflects their own wisdom back to them, and continues to serve as a guide long after the project is complete. She is currently expanding Reach HeART into a full facilitation practice. Her background is as layered as her work: a degree in Technical Theatre (Costume and Scene Design), years in the entertainment industry, and a longstanding yoga practice. She has a constant thirst for creativity and learning, especially in social and emotional development, neuroscience, and the many ways we can all cultivate a practice of BEING present. Angie RUTH Q WOLEVER PhD, NBC-HWC (CST) Guided Meditation Facilitator Ruth Q. Wolever, PhD, NBC-HWC serves as Interim Director of the Osher Center for Integrative Medicine at Vanderbilt and the Director of Vanderbilt Health Coaching . She is an Associate Professor of Physical Medicine & Rehabilitation at Vanderbilt University Medical Center, with secondary appointments in the Department of Psychiatry & Behavioral Sciences and the Vanderbilt University School of Nursing, and an Adjunct Associate Professor at Meharry Medical College. Ruth is the Chief Science Officer for eMindful, Inc. , is a founding member and was the inaugural President of the National Board for Health and Wellness Coaching . A clinical health psychologist and nationally-board certified health and wellness coach (NBC-HWC) , Ruth has over 25 years of experience training and mentoring medical and allied health professionals in behavioral medicine, emotional health and coaching. She also has over 25 years of experience designing, implementing, and evaluating behavior change programs for medical patients and those at risk for chronic disease. Internationally recognized for her expertise on mindfulness and health coaching, Ruth studies mindfulness-based approaches to self-regulation and lifestyle change. Her research has been funded by the National Institutes of Health (NCCAM – now NCCIH, Office of Women’s Health, NHLBI, NIDCD, and NIDDK), the United States Air Force, Centers for Medicare and Medicaid Services, industry, and philanthropy. Ruth is particularly interested in the intersection of mindfulness, behavior change, and inter-professional training. Ruth VICTORIA RAMIREZ, LCSW Licensed Clinical Social Worker Victoria Ramirez, LCSW is a Licensed Clinical Social Worker with over 14 years of experience supporting individuals navigating cancer, chronic illness, grief, and major life transitions. She specializes in working with patients and families impacted by oncology diagnoses, as well as those coping with loss, anxiety, and unexpected life changes. Victoria earned her Master of Social Work from the University of Southern California and is licensed in California. Her therapeutic approach is integrative, drawing primarily from client-centered therapy and cognitive behavioral therapy (CBT) to meet each individual’s unique needs. She is known for creating a calm, supportive, and judgment-free environment where clients feel safe to explore their experiences. With a warm and empathetic style, Victoria collaborates with clients to set both short- and long-term goals, adapting them as needs evolve over time. She is deeply committed to helping individuals build resilience, gain clarity, and feel supported throughout their healing journey. Lisa THANKS TO OUR SPONSORS Presenting Sponsor Sponsors

Wellness < Back to Topics Nutrition Nutrition Play Video Play Video 01:25:23 Nutrition & Diet Considerations for NETs • 2025 NCF Event • August 26, 2025 Nutrition can play a key role in living well with neuroendocrine cancer (neuroendocrine tumors or NETs). Join NET dietitian Meghan Laszlo for an informative session on nutrition and diet considerations for people living with neuroendocrine cancer. She will cover key topics including the use of pancreatic enzymes, managing hyperglycemia, navigating special diets, and understanding supplements. Whether you're newly diagnosed or further along in your journey, this webinar offers practical guidance to help you make informed nutrition choices that support your health and quality of life. For more information, visit ncf.net. Play Video Play Video 45:40 Episode 29: Nutrition & Diet Considerations for NET NET dietician Sina Teskey from the Medical College of Wisconsin answers common questions about diet and nutrition raised among NET patients and caregivers. She addresses special diets, food restrictions, and whether sugar “feeds” cancer. Sina also speaks to diarrhea, and digestive enzymes and shares tips on how to maintain nutrition and weight. MEET SINA TESKEY, RD, CD Sina Teskey, RD, CD received her B.S. from the University of Wisconsin-Madison in 2006 and completed her dietetic internship at the University of Minnesota Medical College-Fairview in 2007. She has spent most of her career working with cancer and eating disorder patients. Sina practiced in the Twin Cities area for 10 years where she also spent time guest starring on a local TV show called Twin Cities Live to share nutrition advice. She moved to Milwaukee and has worked at Froedtert Hospital and the Medical College of Wisconsin since 2018. Sina sees all patients with cancer but specializes in GI cancers and neuroendocrine tumor patients. When she’s not working, Sina is a mom to three kids and a Labrador retriever. She loves to cook and bring people together with food. Her youngest son was diagnosed with Non-Hodgkin’s Lymphoma in 2019. His cancer journey gave insight into what having cancer means to a family and has impacted her practice profoundly. Her son Milo is now 7 years old and in remission. TOP TEN QUESTIONS 1. Is there a diet NET patients should follow? Are there foods NET patients should avoid? Some people say there are certain “trigger foods” to avoid. What CAN I eat? 2. What diet is helpful after bowel surgery? What about pancreas surgery? 3. Are there vitamins or supplements recommended for NET patients? 4. What can NET patients do about diarrhea? What diet or medications might help? 5. What can NET patients do if they struggle with a poor appetite? 6. What can NET patients do if they are struggling to keep on or gain weight? 7. What can NET patients do to stay hydrated? 8. What are pancreatic enzymes and how are they taken? Who are they recommended for? 9. What proteins can people take if they are vegetarian or vegan given soy may be a trigger for carcinoid syndrome? 10. What do you think of alternative diets such as the keto diet or other “special diets?” Does sugar feed cancer? What about intermittent fasting? For more information, visit https://www.lacnets.org/podcast/29. Play Video Play Video 29:50 Episode 1: Nutrition for NETs • The LACNETS Podcast ABOUT THE EPISODE For our very first episode, we welcome NET Dietician Meghan Laszlo, MS, RD, CSO of Cedars-Sinai Medical Center. Meghan answers the top 10 NET nutrition questions, covering topics including carcinoid syndrome, prescription enzymes, diarrhea, recommended diet for NET patients, and much more! MEET THE SPEAKER Meghan Laszlo is a Registered Dietitian (R.D.) and a Board-Certified Specialist in Oncology Nutrition (C.S.O.) at Cedars Sinai’s Samuel Oschin Cancer Center. As an outpatient dietitian, she provides medical nutrition therapy to patients through nutrition counseling, education, and coordination of care. Meghan is fascinated by the nutritional aspects of gastrointestinal, neuroendocrine, and head and neck cancers and is dedicated to helping patients meet their individualized goals. In October 2019, Meghan gave a presentation for LACNETS titled "Nutrition for NETs." TOP NET NUTRITION QUESTIONS 1. What kind of diet benefits NET patients? 2. Which foods cause carcinoid syndrome symptoms? 3. Which foods make diarrhea better and worse? 4. What kinds of fluids and how much are needed with diarrhea? 5. Which dietary supplements are beneficial for NET patients? 6. What is niacin and why is it important for individuals with carcinoid syndrome? 7. How does fat malabsorption effect digestion? 8. How do I know if the prescription enzymes are working? 9. What is small intestinal bacterial overgrowth (SIBO)? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast1. Play Video Play Video 01:04:20 LACNETS - "Nutrition Therapy for NETs" with Meghan Laszlo (Cedars-Sinai) LACNETS meeting, "Nutrition Therapy for NETs" Tuesday, October 8th Venue: Cedars-Sinai Medical Center The discussion focuses on trigger foods, Carcinoid Syndrome, and more. SPEAKER: Meghan Laszlo, MS, RD, CSO www.LACNETS.org Play Video Play Video 01:35:02 LACNETS Webinar: "Nutrition and Neuroendocrine Cancer" with Tara Whyand, NET Dietician Diet is one of the biggest concerns for NET patients. If you have questions about the foods you should or shouldn't be eating, this is the webinar for you! Join LACNETS & Tara Whyand, NET Nutritionist, for her presentation on "Nutrition & Neuroendocrine Cancer." Recorded on February 16th, 2021. Speaker: Tara Whyand, MSc, BSc NET Dietician To learn more about LACNETS, visit www.LACNETS.org. Audio/Video - www.TVPlive.com Wellness Wellness Play Video Play Video 01:24:39 Coping With Neuroendocrine Cancer: Managing Distress, Worry & Grief • 2025 NCF Event • Oct 28, 2025 A neuroendocrine cancer diagnosis can bring emotional, mental, and psychological challenges that are just as difficult as the physical ones. Join licensed clinical psychologist Dr. Karen Kersting from the Medical College of Wisconsin for a supportive discussion on Coping with Neuroendocrine Cancer: Managing Distress, Worry & Grief. She will offer insights and practical strategies to help patients and caregivers navigate the full emotional and psychological impact of living with NETs. Visit NCF.net/events/oct2025 for more information. Play Video Play Video 20:01 Meditation with Ruth Wolever • 2025 Wellness Retreat • "Brilliance" Join Ruth Wolever for a meditation session. This is a recording from the 2025 Neuroendocrine Cancer Foundation Wellness Retreat: Brilliance held in March 2025. Play Video Play Video 22:11 Meditation with Ruth Wolever • 2025 Wellness Retreat • "Blossoming" Join Ruth Wolever for a meditation session. This is a recording from the 2025 Wellness Retreat: Blossoming, held in August 2025. Play Video Play Video 23:52 Meditation with Ruth Wolever • 2024 LACNETS Wellness Retreat • "The Power of Play" Join Ruth Wolever for a meditation session. This is a recording from the 2024 LACNETS Wellness Retreat: The Power of Play held on Feb 17, 2024. Play Video Play Video 48:33 Episode 18: Mental Health & NETs ABOUT THIS EPISODE What are the common mental health issues associated with NET? How can they be managed? How does NET impact young adults, NET patients and children of NET patients? Health psychologist Dr. Kersting of the Medical College of Wisconsin elaborates on mental health challenges facing NET patients and their loved ones. Hear coping strategies for anxiety, eating and sleeping difficulties, fatigue and depression. Dr. Kersting discusses what you can expect when meeting a mental health professional and why supporting your mental health is an integral part of your overall care. MEET THE SPEAKER Dr. Karen Kersting, Psychologist, Assistant Professor in the Department of Surgery at Medical College of Wisconsin Karen Kersting, PhD, is a licensed clinical psychologist who provides counseling and psychotherapy to patients treated by surgeons in the Division of Surgical Oncology at the Medical College of Wisconsin. She completed an undergraduate degree in Journalism at the University of Wisconsin—Madison, a PhD in Counseling Psychology at Virginia Commonwealth University in Richmond, VA, and a postdoctoral fellowship in clinical health psychology at the Dayton Veterans Administration Medical Center in Dayton, OH. She joined the faculty of MCW in 2016. Dr. Kersting’s research interests include the development and assessment of integrated psychosocial services for people coping with cancer diagnosis and treatment, with an emphasis on patients diagnosed with cancer of the pancreas. Additionally, her work aims to highlight issues related to social determinants of health and Acceptance and Commitment Therapy interventions. TOP 10 QUESTIONS 1. How common are mental health issues in NET patients? What are the most common mental health issues you see in NET and what can be done about it? 2. How does anxiety impact NET patients? Why is it so prevalent in these patients? When do I know I need to reach out for support with my anxiety? What does treatment for anxiety look like? 3. How does depression impact NET patients? 4. What kind of sleep problems do you see in NET patients? 5. How do you work with patients who have long periods of fatigue? 6. How can a psychologist help people who are struggling to eat after treatment? 7. How can a patient, loved one, or physician tell the difference between a symptom such as fatigue or anxiety caused by NET tumors vs. a psychological trigger? Does it matter? How does one’s mental health impact one’s NET disease or the effectiveness of treatments? 8. Discuss how NET may impact young adult NET patients? How does NET impact young adult children, teenagers, and young children of NET patients? 9. Who should see a psychologist? When should someone see a psychologist? How does one find a psychologist? What should a patient expect when they come for a first visit with a mental health professional such as a psychologist, therapist, social worker or other? 10. What coping strategies or advice do you have for NET patients? What coping strategies or advice for family members or loved ones? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast18. Play Video Play Video 59:50 Episode 15: Psycho-Oncology ABOUT THIS EPISODE What is psycho-oncology and how can it benefit those living with NET? Psychiatrist Dr. Mona Mojtahedzadeh of Simms/Mann UCLA Center for Integrative Oncology discusses whole-person care for cancer patients and caregivers. From “scanxiety” to sleep hygiene, she acknowledges the range of challenges of living with cancer and shares solutions to improve mental well-being and overall health. MEET DR. MONA MOJTAHEDZADEH Mona Mojtahedzadeh, MD, is a psychiatrist at Simms-Mann/UCLA Center for Integrative Oncology, which allows her to continue to perform a work of meaning within a valued population who embrace her into some of their most pivotal moments along their cancer illness trajectory. Dr. Mojtahedzadeh is board certified in Psychiatry as well as in Consultation-Liaison Psychiatry. She obtained her MD from Tehran, Iran’s Shahid Beheshti University of Medical Sciences. She was a general and family practitioner at an underserved health and urgent care clinic in Iran. She completed her psychiatry training through residencies at Texas Tech University Health and Science Center coupled with Loma Linda University Health, where she was granted the department’s research award of the year. She completed a consultation-liaison (C-L) psychiatry fellowship at the University of Southern California and Los Angeles County (LAC+USC) and later served as an Assistant Professor in the Department of Supportive Care Medicine at City of Hope National Medical Center and an Adjunct Assistant Professor of Psychiatry at USC. Her scholarly work includes over 32 publications, posters, and book chapters in areas of medicine, mental health, and their overlap. TOP 10 PSYCHO-ONCOLOGY QUESTIONS 1. Who might seek a psychiatrist? How does one go about finding a psychiatrist that is right for him or her? 2. What is psycho-oncology? If someone living with NET is looking for a psychiatrist, should they seek someone who has trained in psycho-oncology? How does one find such a person? 3. How do you determine if symptoms such as depression, anxiety, mood swing, or fatigue are symptoms caused by their NET cancer or not? 4. Is it safe for NET patients, particularly those with high levels of serotonin, to take antidepressants such as SSRIs that may increase levels of serotonin? 5. If someone living with NET struggles with depression, what is your approach? How do you determine the best treatment option? 6. If someone living with NET struggles with anxiety, how would you approach this patient and how might you manage it? 7. If someone living with NET struggles with sleep issues, what might your thoughts be? 8. What suggestions might you have for loved ones of someone living with cancer who is trying to support someone struggling with depression, anxiety, or mood swings? 9. What suggestions do you have for coping with one’s cancer diagnosis? How might one find some stability and peace during what often feels like a rollercoaster ride? 10. What last words of hope would you leave with the audience? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast15. Play Video Play Video 20:24 Guided Meditation with Ruth - August 5, 2023 - LACNETS Virtual Wellness Retreat on Resilience Watch this guided meditation with Ruth. This session is part of the August 2023 LACNETS Virtual Wellness Retreat on Resilience. Play Video Play Video 20:29 Guided Meditation with Ruth - February 11, 2023 - LACNETS Virtual Wellness Retreat on Centeredness Watch this guided meditation with Ruth. This session is part of the LACNETS Virtual Wellness Retreat on Centeredness that took place on February 11, 2023. Play Video Play Video 32:11 Yoga with Julie • Feb 2023 • LACNETS Health & Wellness Retreat Health Coach Julie takes us through a gentle yoga session. For more information, visit LACNETS.org Play Video Play Video 32:38 Yoga with Julie - LACNETS 2022 Virtual Wellness Retreat Julie leads a yoga session as part of the 2022 LACNETS Virtual Wellness Retreat. Play Video Play Video 26:26 Meditation with Ruth - 2022 LACNETS Virtual Wellness Retreat Ruth leads a meditation session as part of the 2022 LACNETS Virtual Wellness Retreat. Play Video Play Video 28:09 Yoga as Gentle Mindful Movement for All Levels This is a 32-minute gentle yoga class geared specifically for those new to yoga or those who are interested in a gentle practice. Have a chair, mat and pillow handy. To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 20:31 Guided Meditation for Cultivating Intentions (20 minutes) This 20-minute guided meditation offers powerful techniques to reduce stress, cultivate intentions and find your inner calm. Meditation teacher: Ruth Q. Wolever, PhD, NBC-HWC Chief Science Officer, eMindful To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 33:05 Gentle Yoga for Body Awareness (for All Levels) This is a 30-minute gentle yoga class geared specifically for those new to yoga or those who are interested in a gentle practice. Have a chair, mat, wall space, and pillow handy. To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 19:13 Guided Meditation for Self-Healing This 19-minute meditation offers a powerful reset for your own self-healing. Meditation teacher: Ruth Q. Wolever, PhD, NBC-HWC Chief Science Officer, eMindful To learn more about LACNETS, visit www.LACNETS.org. Caregiving/Palliative/Supportive Care Caregiving/Palliative/Supportive Care Play Video Play Video 24:02 4. Panel • Navigating Supportive Care • Panelists Dr. Banerjee, Lindsay, NP, and Ramirez, LCSW In this panel from the Neuroendocrine Cancer Foundation’s 2026 Virtual Annual Patient Conference, Dr. Daneng Li of City of Hope moderates a discussion on Navigating Supportive Care for people living with neuroendocrine tumors. Panelists Dr. Banerjee, Sheila Lindsay, NP, and Victoria Ramirez, LCSW, explore the physical, emotional, psychological, and practical support patients and caregivers may need throughout the neuroendocrine cancer journey. Topics include early palliative care, symptom management, caregiver stress, psychosocial support, scan-related anxiety, second opinions, family communication, patient advocacy, and aligning treatment decisions with each person’s goals and quality of life. The panel emphasizes that supportive care is not only for end of life. It can be an important part of care from the beginning, helping patients and caregivers navigate uncertainty, communicate with their care teams, access resources, and feel less alone. Learn more about the Neuroendocrine Cancer Foundation and access patient resources at www.NCF.net. For more information about this conference, visit https://www.ncf.net/events/2026conference This video is for educational purposes only and is not a substitute for professional medical advice. Please consult your medical team with questions about your individual care or treatment. #NeuroendocrineCancer #NeuroendocrineTumors #NETCancer #NETs #SupportiveCare #PalliativeCare #CancerSupport #CaregiverSupport #CancerCaregivers #PatientAdvocacy #QualityOfLife #NCF #PatientConference #CancerEducation Play Video Play Video 42:59 Episode 37: "Supportive Oncology for Neuroendocrine Cancer" What is supportive care or supportive oncology? What is cancer-related distress? How might NET patients benefit from supportive care? Yale oncologist Dr. Maryam Lustberg suggests strategies to manage cancer-related fatigue, diarrhea, nausea, mouth sores, peripheral neuropathy, distress, anxiety, and anxiety. She also addresses considerations for fertility and sexual health. MEET DR. MARYAM LUSTBERG Dr. Maryam Lustberg is an American breast oncologist. She is the Director of The Breast Center at Smilow Cancer Hospital and Chief of Breast Medical Oncology at Yale Cancer Center. Dr. Lustberg previously served as the Medical Director of Cancer Supportive Care Services at Ohio State’s Comprehensive Cancer Center. She is the Immediate Past President of the Multinational Association of Supportive Care in Cancer. She is also an Associate Editor for the Journal of Cancer Survivorship. TOP TEN QUESTIONS ABOUT SUPPORTIVE CARE: 1. What is supportive care in cancer (or supportive oncology)? What is survivorship? How do these concepts apply to the NET community? 2. What is the 1st step for patients to get supportive care? 3. What are the most common treated-related adverse events or side effects? What are risk factors for them? (Will all patients experience all potential side effects?) 4. What causes cancer-related fatigue (CRF)? What are some strategies to manage cancer-related fatigue? 5. What are some strategies to manage diarrhea? 6. What are some strategies to manage nausea? 7. What are some strategies to manage mouth sores? 8. What is peripheral neuropathy? When do patients experience it and what can be done to prevent it? 9. What should patients understand about sexual health and fertility? 10. How can psychosocial needs such as distress, anxiety, and depression be addressed and supported? For more information, visit https://www.lacnets.org/podcast/37 Play Video Play Video 01:26:11 "Palliative Care for Neuroendocrine Cancer" Dr. Chandana Banerjee • 2024 #LACNETS Educational Event Learn about Palliative Care: what it is, what it is not, and how it may help those affected by neuroendocrine cancer. Dr. Chandana Banerjee, a palliative care and hospice specialist from the City of Hope Cancer Center in Los Angeles, demystifies these topics. Visit LACNETS.org for more information. Play Video Play Video 41:10 Episode 14: Palliative Care ABOUT THIS EPISODE What is palliative care and how does this relate to NET? Palliative care physician Dr. Chandana Banerjee of City of Hope shares insights and tips on communication, coping, and managing grief and loss. MEET DR. CHANDANA BANERJEE Chandana Banerjee, M.D., M.P.A., HMDC, is the Dean, Director and designated institutional official for Graduate Medical Education at City of Hope. She is also an assistant clinical professor in the Department of Supportive Care Medicine, specializing in hospice and palliative care. She developed the City of Hope Hospice & Palliative Medicine Fellowship. She also established the Cancer Pain Rotation for Kaiser Permanente Los Angeles Hospice & Palliative Medicine Fellowship, which is now part of the core curriculum for the Kaiser Permanente Southern California Hospice & Palliative Medicine fellowship program. Dr Banerjee also developed and directed the End of Life Symposium, which was first held at City of Hope in September 2019 and was endowed by Arthur Riggs, Ph.D. She is the physician lead for Schwartz Rounds at City of Hope and serves as chair on the End of Life Option Act Subcommittee. She is also a member of the Continuing Medical Education and the Ethics and Quality of Life committees. She co-founded the City of Hope Expressions of Hope initiative in partnership with Diversity, Equity and Inclusion. TOP 10 PALLIATIVE CARE QUESTIONS 1. What is palliative care? How is it different from hospice? 2. Who should be in palliative care? Who should not be in palliative care? 3. How does someone ask for palliative care? 4. Give an example of how palliative care can help someone living with NET. 5. What does coping with a cancer diagnosis look like? What suggestions do you have to help with coping? 6. What advice do you have for NET caregivers? 7. What insights or advice do you have to help with communication between NET patients and providers? NET patients and their loved ones? 8. What does end-of-life care planning look like? When should it begin? 9. What does the end of life look like for NET patients? 10. How can one manage grief and loss related to the cancer diagnosis? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast14. Play Video Play Video 16:29 13. Complementary Medicine (Dr. Duma) - 2021 LACNETS Virtual Conference 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Presenter: Narjust Duma, MD Assistant Professor & Thoracic Oncologist UW Madison This presentation is also available in Spanish, found here: www.LACNETS.org/spanish-resources. For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 01:02:18 LACNETS - "Pain Management for NETs" Dr. Najmeh Sadoughi Dr. Najmeh Sadoughi "Multidisciplinary Approaches to Pain Management for Neuroendocrine Tumors" Najmeh Sadoughi, MD Board Certified Interventional Pain Specialist LACNETS Patient Education Seminar January 9, 2018 UCLA Los Angeles, California LACNETS is a program by Generate Possibility, a 501(c)(3) non-profit corporation. Los Angeles Carcinoid Neuroendocrine Tumor Society www.LACNETS.org Play Video Play Video 05:40 16. Caregiver Story (Federico and Gilda) - 2021 LACNETS Virtual Conference NET caregiver Gilda shares her story about the importance of NET patient advocacy and support. 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS This video is also available in Spanish, found here: www.LACNETS.org/spanish-resources. For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 05:58 Patient Story: NET Patient shares her experience with the LACNETS health coaching program NET Patient Vivian shares her experience with the LACNETS health coaching program. August 28, 2020 To learn more about the LACNETS Health Coaching Program, visit www.LACNETS.org/healthcoaching. Play Video Play Video 01:37:15 LACNETS Webinar: Thriving with NETs - How Health & Wellness Coaching Can Help You LACNETS webinar - “Thriving with NETs - How Health & Wellness Coaching Can Help You" Friday, August 28th, 2020 SPEAKERS: Leeann Hays, RN, NBC-HWC Julie Oijala, RN, NBC-HWC Katherine Smith, NBC-HWC Ruth Q. Wolever, PhD, NBC-HWC Lisa Yen, NP, NBC-HWC Learn more here about the LACNETS Free Health Coaching Program: www.LACNETS.org/healthcoaching Audio/Video - www.TVPlive.com www.LACNETS.org Play Video Play Video 03:48 Caregiver Story: NET Caregiver shares about his experience as a caregiver to his wife (LACNETS) NET Caregiver Jack shares about his experience as a caregiver to his wife who is living with NET. November 7, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 12:59 3. LACNETS 2020 Symposium - Living with Cancer & Covid, Patient Story LACNETS - 2020 Virtual NET Cancer Day Symposium Recorded on November 7th, 2020 Presentations: - LACNETS Intro (start - 1:21) - Patient Story (1:21 - 6:34) - "Living with Cancer & Covid" with Chandana Banerjee, MD, MPA, Assistant Clinical Professor Department of Supportive Care Medicine City of Hope (6:34 - end) To learn more about LACNETS, visit www.LACNETS.org. AV/Production by Rich Tamayo at TVPLive.com. Play Video Play Video 01:29:36 LACNETS Webinar - "What Matters Most? Meaningful Advance Care Planning as a Gift to Your Loved Ones" LACNETS webinar - "What Matters Most? Meaningful Advance Care Planning as a Gift to Your Loved Ones" Wednesday, May 6th, 2020 SPEAKER: Redwing Keyssar, RN Palliative Care Clinician, Author of "What Matters Most" Learn more here: www.LACNETS.org Audio/Video - www.TVPlive.com Play Video Play Video 01:42:18 LACNETS Webinar: "How to Ask For, Accept and Get the Help You Need" with Kim Hamer LACNETS Webinar: "How to Ask For, Accept and Get the Help You Need" with Kim Hamer Kim shares special insights on how to ask for and receive help, gained from losing her own husband to lung cancer. Speaker: Kim Hamer Author, 100 Acts of Love: A Girlfriend's Guide to Loving Your Friend through Cancer or Loss www.100actsoflove.com Learn more about LACNETS: www.LACNETS.org Audio/Video - www.TVPlive.com Music Heals Music Heals Play Video Play Video 13:54 "Circle Song" - Laugh and sing along with NET Patient Samuel Prentice Jr. Laugh and sing-along with NETCONNECT mentor Samuel Prentice Jr. He shares a song he wrote for the NET community titled "Circle Song." To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 04:17 "Hush" by Giovanna Joyce Imbesi (Photography by David F. Coppedge) [Written by David F. Coppedge] "Giovanna Imbesi, founder of LACNETS (Los Angeles County Neuroendocrine Tumor Society), died on November 24, 2019 after a 14-year battle with the disease. She worked tirelessly to educate and help patients with neuroendocrine cancer and support efforts to find new treatments. Giovanna was also an accomplished musician, pianist and composer. This is her song "Hush" from her album "Short Stories" that I put to some of my photographs of fall colors in Utah and Colorado. When I presented it to her in 2016, she was very appreciative, calling it "beautiful and touching." I offer it here on YouTube as a tribute to her hard work on behalf of others suffering from this rare cancer, and as a sample of her quiet spirit and desire for peace in the midst of years of surgeries and treatments for the life-threatening disease." Play Video Play Video 06:52 Neuroendocrine Tumor Song A tongue-in-cheek Neuroendocrine Tumor awareness song about this uncommon and typically uncurable cancer and potential treatments to manage it long-term. For entertainment purposes only. I'm sure this information will be outdated (and corrected) soon because of the faithful efforts underway by dedicated researchers. Reliable and current medical information, resources, and support for patients and caregivers can be found at the Neuroendocrine Cancer Foundation website - https://www.ncf.net Link to "NET Vitals" worksheet referenced in this video: https://www.ncf.net/netvitals Disclosures: 1. While the author endorses the NCF organization, this content is not endorsed by the NCF organization. Refer instead to their website. 2. Images resembling copyrighted images are unintentional. < Back to Topics Next Topic >