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Join us in person for a rare opportunity to gather at the National Cancer Institute (NCI) in Bethesda, Maryland, for our first joint patient educational event between the NCI, LACNETS & the Pheo Para Alliance (PPA).  On Saturday, September 9th, renowned NET experts from across North America will cover an array of topics from surgery, PRRT, systemic treatments and clinical trials.  Registration Closed Join us in person for a rare opportunity to gather at the National Cancer Institute (NCI) in Bethesda, Maryland, for our first joint patient educational event between the NCI, LACNETS & the Pheo Para Alliance (PPA) . On Saturday, September 9th, renowned NET experts from across North America will cover an array of topics from surgery, PRRT, systemic treatments and clinical trials. LACNETS is honored to partner with the NCI, the leader in cancer research, and the PPA, a non-profit organization dedicated to empowering those with pheochromocytoma or paraganglioma through advocacy, education, research and support. A special thank you to our partner The Carcinoid Cancer Foundation for their support in awareness and outreach efforts. All NET Patients and Caregivers are welcome. This conference will not be live-streamed or recorded. Breakfast and lunch provided. Networking opportunities with other patients, caregivers, and NET experts. *Please note there is a NANETS Regional NET Education Event for the medical community on September 8th, also hosted at the NCI. Tell your local healthcare professionals about this NANETS regional event to help raise awareness of and knowledge about NET. LACNETS Track Click Here for LACNETS Track Speaker Bios >>> PPA Track Click Here for PPA Track Speaker Bios >>> ACCOMMODATIONS Recommended hotels: The Bethesdan Tapestry Collection by Hilton 8120 Wisconsin Avenue Bethesda, MD 20814 Hyatt Regency Bethesda One Bethesda Metro Center (7400 Wisconsin Ave) Bethesda, MD 20814 TRANSPORTATION Airport Click here for more information about the nearest airports >>> GOVT ID/Security Check Required For All Participants Valid government-issued photo identification is accepted to receive a visitor pass. Acceptable identification include: REAL ID Driver’s License or State Identification Card Passport or Passport Card HSPD-12 PIV or CAC Card Permanent Resident Card Federally recognized, tribal-issued photo ID Canadian provincial driver's license, or Indian and Northern Affairs Canada Cards. Any visitor 16 years of age and older is required to provide identification to receive a visitor ID. Getting to the Natcher Conference Center Note: The Gateway Center Visitor Entrance is only open from 6:30 - 10 AM. Shuttles from Hotels to the Gateway Center Visitor Entrance, Building 66: Natcher Conference Center (Building 45) Shuttles from Hotels to Gateway Center Visitor Entrance, Building 66. (Please note these are outside Shuttles, not Hotel Courtesy Shuttles). Shuttles from 7 - 8 AM Shuttles will run from the Hyatt Regency, The Bethesdan Hotel by Hilton and the Gateway Center Visitor Entrance, Building 66, 9000 Rockville Pike, Bethesda, MD 20894 beginning at 7 AM. Drop off at Gateway Center for security clearance. Gateway Center to Natcher Conference Center (Building 45) Walk to Natcher Conference Center Please exit the Gateway Center via stairs or elevator on the second floor and follow the paved walkway to building 45 (Natcher Conference Center). You will approach the back of the building. The doors will be open. Take the stairs or elevators one floor down. This is the Natcher Conference Center entrance for pedestrians walking from the Gateway Center. Rideshare to the NIH Gateway Center + Walk to the Natcher Conference Center (Building 45) Take a taxi, Uber or Lyft to the NIH Gateway Center, 9000 Rockville Pike, Bethesda, MD 20894 Drop off at the Gateway Center for security clearance Gateway Center to Natcher Conference Center (Building 45) Walk over to Natcher Conference Center Please exit the Gateway Center via stairs or elevator on the second floor and follow the paved walkway to building 45 (Natcher Conference Center). You will approach the back of the building. The doors will be open. Take the stairs or elevators one floor down. This is the Natcher Conference Center entrance for pedestrians walking from the Gateway Center. Take the Metro's Red Line to the Medical Center Station + Walk to the Gateway Center + Walk to the Natcher Conference Center (Building 45) Take the Metro's Red Line to the Medical Center Station Visit the Metro website for more information about the Medical Center Station hours, timetables and 'Plan A Trip' tool. The Medical Center Station is located at 8810 Rockville Pike, Bethesda, MD 20814. Walk to the NIH Gateway Center at 9000 Rockville Pike, Bethesda, MD 20894 Head south on Rockville Pike toward South Dr (171 ft) Gateway Center to Natcher Conference Center (Building 45) Please exit the Gateway Center via stairs or elevator on the second floor and follow the paved walkway to building 45 (Natcher Conference Center). You will approach the back of the building. The doors will be open. Take the stairs or elevators one floor down. This is the Natcher Conference Center entrance for pedestrians walking from the Gateway Center. Drive your car to the NIH Commercial Vehicle Inspection Facility (CVIF) + Park in the lot next to the Natcher Conference Center (Building 45) Download + Print the Visitor Entry Processing Information Form >> Clear Security at the NIH CVIF The NIH CVIF is located at: 9000 Rockville Pike Bethesda, MD 20892. You must fill out the Visitor Entry Processing Information Form. Please print this form before arriving at the security gate for faster processing. Drive from CVIF to the Natcher Conference Center (Building 45) After exiting CVIF, take a left at the two-way traffic sign. Take a right on Wilson Drive. Take a left on Center Drive. You will pass several buildings. Please note that the building numbers are not in numerical order. Park in the lot next to the Natcher Conference Center. *Note: Parking garages are closed on Saturday. Only surface/outside lots and parking spots are available near the Natcher building. Look for this sign for the CVIF Entrance Take a left at this two-way traffic sign The Natcher Conference Center is a cement and glass building. #45 is visible in the area circled green below. Park in the surface lots circled here in red next to Natcher, Medlars St, and Center Dr. All parking restrictions are lifted and won't be enforced, except for handicapped parking spaces. LEAVING THE CONFERENCE CENTER 2:30 PM - 4:30 PM Two shuttles will run between: Natcher Conference Center Hyatt Regency The Bethesdan Hotel by Hilton Up The information provided is for educational purposes only and does not substitute for medical advice. Talk to your medical team if you have any questions or concerns about your individual care and treatment. The opinions expressed in this program are those of the speakers and do not represent the opinion of LACNETS.

Pheo/Para Resources EDUCATIONAL VIDEOS "Update on Pheochromocytoma and Paraganglioma: Focusing on Advanced/Metastatic Disease" with Jaydira Del Rivero, MD 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. *This presentation was recorded on February 17, 2022. Dr. Del Rivero’s presentation slides can be downloaded here. This presentation is available in Spanish, found here . "Focus on Pheochromocytoma/Paraganglioma" Join LACNETS for a unique webinar with a live 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. Click here for more information>> Aimee Powell Shares Her NET Journey 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 . PODCAST The LACNETS Podcast: "Pheochromocytoma & Paraganglioma" with Jaydira Del Rivero, MD 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. Listen here READING MATERIALS NANETS Guidelines for Surveillance and Management of Metastatic and/or Unresectable Pheochromocytoma and Paraganglioma Download here BLOG "The Notorious PCC" - by Aimee Powell "El Notorio Feo/Para" (Spanish) CLINICAL TRIALS Pheo Para Clinical Trials PHEO/PARA ORGANIZATIONS Pheo Para Alliance Pheo Para Project VHL Alliance AMEND PHEiPAS RESOURCES FROM LANTHEUS Download the Azedra patient brochure Download more information on the AZEDRA Service Connection® Patient Services For more information, please visit: Azedra Patient Website Lantheus Website NOTE: Azedra will be discontinued in early 2024. Find an AZEDRA treatment site near you AZEDRA Site Locator

The Giovanna Joyce Imbesi Above & Beyond Award The Giovanna Joyce Imbesi Above & Beyond Award is given to individuals in recognition of outstanding dedication to NET patient advocacy. Recipients of this award demonstrate an attitude of excellence, awareness, and hope for the neuroendocrine cancer community. The award is in honor of the late founder of LACNETS (now Neuroendocrine Cancer Foundation), Giovanna Joyce Imbesi . 2023 Awardee TOM BAJORAS Watch the award presentation 2022 Awardee MICHEL DEQUEVEDO Watch the award presentation 2021 Awardee SAMUEL PRENTICE JR. Watch the award presentation 2020 Awardee MARY DONLEVY Watch the award presentaion 2019 Awardee BRENT CURRIE Watch the award presentation 2018 Awardee BETH DEBLASE Watch the award presentation

Xermelo Resources https://www.xermelo.com/ Talk to a NET nurse about carcinoid syndrome diarrhea. Go to www.enrollxermelo.com . Download the TerSera Nursing Support Program brochure Download the Xermelo Patient Brochure

Surgery < Back to Topics 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 >

Financial Assistance Resources WATCH Watch "Navigating Health & Disability Insurance" with Joanne Fawzy Morales, Esq. READ Read our blog post on Insurance Resources RESOURCES Boehringer Ingelheim created a resource designed to educate patients on the recent Medicare Part D changes. Click here to learn more. Advanced Accelerator Applications (AAA) has a patient support program to deliver assistance for eligible patients. Click here to learn more. GoodRx is a free website and mobile app that compares prescription drug price and provides drug coupons for discounts on medications. IpsenCares provides coverage, access, reimbursement, and education support for lanreotide (Somatuline Depot). Go to ipsencares.com or call 866-435-5677. Novartis Patient Assistance Foundation (NPAF) provides access to Novartis medications including Afinitor (everolimus), Lutathera (lutetium Lu177 dotatate), and Sandostatin LAR (octreotide acetate). Click here to check eligibility and application instructions. For the Novartis universal co-pay program, go to Copay.NovartisOncology.com or call 877-577-7756. Novartis - Patient Financial Assistance & Government Insurance TerSera offers co-pay assistance for Xermelo (telotristat ethyl), a prescription pill, used along with somatostatin analog (SSA) therapy for carcinoid syndrome diarrhea in adults who are not adequately controlled by SSA therapy. For more information, go to copay.xermelo.com. Patient Advocate Foundation provides co-pay relief and financial aid. Triage Cancer offers a lengthy list of financial resources including travel expenses and lodging, transportation, young adult specific assistance, prescription drugs, and much more. Neuroendocrine Cancer Awareness Network - Patient Financial Assistance Healthwell Foundation NeedyMeds NCI Travel and Lodging Reimbursement Info Packet Creon Financial Assistance The CureNET Project is offering a $5,000 patient grant for any NET patient that is 18 years or older. It is meant to help cover medical costs, travel to see a NET specialist, pay bills, allow families to spend time together - whatever the recipient feels necessary. The submission deadline is October 15, 2023. Click here for more information.

Health Coaching Interest Form Health coaching is about wellness coaching and self-care. It does not involve navigation or NET-specific discussions. For NET-specific information and resources, visit our Resources Page . For NET support assistance, go to our Support Line .

Symptom Tracking Health Storylines App (FREE) by The Carcinoid Cancer Foundation + LACNETS Download Here Evernote Download Here

Learn more about the NET experts presenting on various topics during the 2023 LACNETS Neuroendocrine Tumor Patient Conference. 2023 LACNETS + PPA + NCI Patient Conference Speakers SURGERY 101 FOR NETS JAMES HOWE, MD Professor of Surgery Director, Surgical Oncology and Endocrine Surgery Roy J. and Lucille A. Carver University of Iowa College of Medicine Dr. Howe is Professor of Surgery at the University of Iowa. He trained in General Surgery at Barnes Hospital/Washington University, which included a T32 Surgical Oncology research fellowship where he was a member of the group that found the gene responsible for Multiple Endocrine Neoplasia type 2 by positional cloning. He completed a clinical fellowship in Surgical Oncology at Memorial Sloan-Kettering Cancer Center, then began his career at the University of Iowa in 1996. Here he has specialized in gastrointestinal cancer and endocrine surgery, and his research has concentrated on genetic studies of cancer. His laboratory discovered a gene that causes the inherited colorectal cancer syndrome Juvenile Polyposis in 1998, and in 2001 identified a second predisposition gene. Dr. Howe has written over 170 peer-reviewed papers, one book, and over 50 book chapters. He has directed the Division of Surgical Oncology and Endocrine Surgery since 2002, and his clinical practice and research has focused on small bowel and pancreatic neuroendocrine tumors (NETs) and their metastases. Dr. Howe served as President of the North American Neuroendocrine Tumor Society from 2018-20 and the Society of Surgical Oncology from 2020-21. Clinically he is known for his work on cytoreduction of NET liver metastases and guidelines for the surgical management of small bowel and pancreatic NETs. Dr. Howe has directed a funded laboratory over his career, been chair of an NIH Study Section, and his current research focuses on gene expression and drug sensitivity in NETs. SURGERY: GI NETS ALEXANDRA GANGI, MD Surgical Oncologist Cedars-Sinai Medical Center 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. SURGERY: PNETS CALLISIA CLARKE, MD Chief of Surgical Oncology Medical College of Wisconsin Dr. Callisia Clarke completed her medical degree at the University of Cincinnati College of Medicine where she was elected to the Alpha Omega Alpha Honors Society. She completed a general surgery residency at the University of Cincinnati Medical Center in Cincinnati, Ohio in 2013 and a fellowship in Complex General Surgical Oncology at The University of Texas MD Anderson Cancer Center in 2016. She joined the faculty at the Medical College of Wisconsin in 2016 and is an Associate Professor of Surgery, and Chief of the Division of Surgical Oncology. Her research efforts are centered on epigenetic regulation of pancreatic neuroendocrine tumors and Diversity, Equity, and Inclusion in academic surgery. She holds several leadership positions in national organizations. She was recently elected the President-Elect of the Association for Academic Surgery, the first Black Woman to hold this office. And serves in other leadership roles in the Society of Surgical Oncology and the American Board of Surgery. SURGERY: LIVER NETS JONATHAN HERNANDEZ Chief of Surgical Oncology National Cancer Institute Dr. Hernandez graduated from medical school with honors from the University of Florida, and completed general surgery training at the University of South Florida. During his residency, Dr. Hernandez spent two years at the Moffitt Cancer Center and Research Institute interrogating molecular diagnostics for liver metastases and miRNA-mediated mechanisms of metastatic spread with the support of NIH funding. Following residency, Dr. Hernandez completed fellowship training in both surgical oncology and hepatopancreatobiliary surgery at Memorial Sloan Kettering Cancer Center. During his fellowships, Dr. Hernandez spent an additional two years in dedicated basic research studying metastatic colonization as a scholar in the Cell Biology Program of the Sloan Kettering Institute supported by NIH funding and a grant from America’s HepatoPancreatoBiliary Association. Dr. Hernandez was also a visiting investigator in the Cell and Developmental Biology Department of Weill Medical College of Cornell University studying metastatic niche evolution with funding support from the Conquer Cancer Foundation of the American Society of Clinical Oncology. Dr. Hernandez has authored over 150 peer-reviewed publications and has contributed book chapters in numerous authoritative surgical textbooks. Dr. Jonathan Hernandez is a surgical oncologist/HPB surgeon, chief of the surgical oncology section (Surgical Oncology Program/NCI/NIH), an Associate Professor of Surgery (Uniformed Services University of the Health Sciences), and a Clinical Professor of Surgery (George Washington University). He specializes in the treatment of metastatic and primary tumors of the liver, bile ducts and pancreas, as well as in the surgical management of complex abdominal tumors. Dr. Hernandez’s research efforts focus on implementation of ex-vivo human tumor systems that allow his lab to fully characterize tumors from the operating room and evaluate new therapies in an unfettered platform. The Hernandez lab utilizes these human tumor systems to 1) develop combination therapies for recalcitrant tumors, 2) delineate and target uncharacterized signaling axes for therapeutic gain in patients with cholangiocarcinoma, and 3) elucidate the mechanisms through which tumor cells coopt the microenvironment of distant organs to form life-threatening metastases. SURGERY: UNDERSTANDING CARCINOID CRISIS JULIE HALLET, MD, MSc, FRCSC, FSSO Associate Professor of Surgery Sunnybrook Health Sciences Center Dr. Hallet is an Associate Professor of Surgery at the University of Toronto and a Surgical Oncologist with a clinical practice devoted to hepato-biliary, pancreatic and upper gastrointestinal malignancies at the Odette Cancer Centre - Sunnybrook Health Sciences Centre. Her practice further focuses on neuroendocrine tumors as part of the Susan Leslie Multidisciplinary Clinic for Neuroendocrine Tumors, as well as minimally invasive therapies for cancer treatment. She completed general surgery residency and MSc in clinical epidemiology at Université Laval in Québec City, followed by a Surgical Oncology and hepato-pancreatico-biliary clinical fellowship at the University of Toronto, and additional training in advanced minimally invasive surgery at the Institut de recherche contre les cancers de l’appareil digestif (IRCAD) in Strasbourg, France. Dr. Hallet holds leadership roles in National and International societies. Among those roles, she serves as the Vice-Chair of the Hepato-Pancreatico-Biliary Disease Site Group of the Society of Surgical Oncology, the Chair of the Early Career Group the International Hepato-Pancreatico-Biliary Association, and a member of the Guidelines Committee of the North American Neuroendocrine Tumors Society, as well as on the executive committees of the Canadian Society of Surgical Oncology and the Canadian Hepato-Pancreato-Biliary Association. She is a founding member of the Society of Surgical Ergonomics for which she also chairs the Research and Applied Ergonomics Committee. She also is Associate Section Editor for the Annals of Surgical Oncology, and is part of the Editorial Board of HPB, the World Journal of Surgery, and the British Journal of Surgery. Dr. Hallet’s research focuses on health services research to examine processes of care and outcomes in oncology, with a focus on patient-centred and patient-reported outcomes. To support her research, she has received over $10 millions in operating grants, including from the Canadian Institutes of Health Research and the Ontario Institute of Cancer Research. Dr. Hallet has over 200 peer-reviewed publications, including high-impact papers in JAMA Surgery, JAMA Oncology, the Journal of the NCCN, and Annals of Surgery. THE ROLE OF NEOADJUVANT/ADJUVANT TREATMENT: DO I START SSA OR CHEMO BEFORE OR AFTER SURGERY? HELOISA SOARES, MD Medical Oncologist Associate Professor Huntsman Cancer Institute, University of Utah Dr. Heloisa Soares is a medical oncologist with a focus in GI and neuroendocrine cancers. She is an associate professor at the Huntsman Cancer Institute (HCI) at University of Utah. Dr. Soares received her medical degree at Faculdade de Medicine do ABC in Brazil, where she was born. She completed her residency training at the Mount Sinai Medical Center of Florida and her hematology-oncology fellowship training and PhD in molecular biology at UCLA. Dr. Soares has neuroendocrine tumors and gastrointestinal (GI) cancers as the major focus of her research and clinical activities. She serves as the Medical Director for the Clinical Trials Office as well as the co-physician leader in the GI Clinical Trials Research Group at HCI. In 2019, she was elected as a member of the board of directors for The North American Neuroendocrine Tumor Society (NANETS). Additionally, she is a member of the NCI NET taskforce and member of SWOG and NRG cooperative groups. She is also a panel member for the Neuroendocrine and Adrenal Tumors NCCN Clinical Practice Guidelines in Oncology. MEDICAL 101 FOR NETS SANDY KOTIAH, MD Director, The Neuroendocrine Tumor Center Mercy Medical Center Sandy D. Kotiah, M.D., a Board Certified medical oncologist, serves as the Director of The Neuroendocrine Tumor Center at Mercy and is a member of Medical Oncology and Hematology at Mercy in Baltimore, Maryland. Dr. Kotiah leads a multidisciplinary team of specialty doctors focused on providing some of the best treatment options for rare neuroendocrine diseases. Dr. Kotiah’s compassionate and caring nature as well as her exceptional clinical knowledge and dedication to searching for answers to complicated cancer diagnoses makes her a sought-after Medical Oncologist and Hematologist in the Baltimore region. SYSTEMIC TREATMENTS - WHAT, WHEN & WHY OF MEDICAL THERAPIES (11:40 AM) WHAT'S NEW WITH PRRT: CLINICAL TRIALS (2:20 PM) AMAN CHAUHAN, MD Medical Oncologist University of Miami Aman Chauhan, MD, earned his medical degree from the Kasturba Medical College in Manipal, Karnataka, India, followed by a dual residency in internal medicine and pediatrics at Louisiana State University in New Orleans. Dr. Chauhan completed his fellowship in hematology and oncology at the University of Kentucky, especially focusing on neuroendocrine tumor (NETs). Additionally, Dr. Chauhan completed a Cancer Therapy Evaluation Program (CTEP) physician externship at the National Cancer Institute (NCI) that focused on designing clinical trials and clinical research projects. His clinical interests include treating NETs, including carcinoid tumors, high-grade neuroendocrine carcinomas, and small and large cell neuroendocrine carcinoma. Dr Chauhan leads the University of Miami Neuroendocrine Cancer Program and co-leads Sylvester Theranostics Drug Development Program. He is national principal investigator on several investigator initiated neuroendocrine cancer clinical trials. He has authored over 70 scientific publications and book chapters and has received career development award from NCI CTEP. Dr Chauhan also serves on AJCC and ASCO NET guideline committees and is an active member of NANETS communication committee. Dr. Chauhan is board certified in internal medicine and medical oncology. He is a member of the American Society of Clinical Oncology as well as the American Association of Cancer Research and the North American Neuroendocrine Tumor Society. NUTS & BOLTS OF CLINICAL TRIALS JAYDIRA DEL RIVERO, MD Endocrinologist and Oncologist National Cancer Institute 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. PRRT: WHAT PATIENTS NEED TO KNOW ERIK MITTRA, MD, PhD Radiologist, Nuclear Medicine Oregon Health & Science University Dr. Mittra is a Professor of Diagnostic Radiology at Oregon Health & Science University (OHSU) where he serves as Chief of the Molecular Imaging and Therapy Section and Director of the Targeted Radiopharmaceutical Therapy Program. Dr. Mittra received his medical and graduate degrees through the MD/PhD program at Stony Brook University. His post-graduate training included an internship at Stony Brook University, followed by a residency and fellowship in Nuclear Medicine at Stanford University where he was faculty for many years before moving to OHSU. Dr. Mittra is interested in all aspects of nuclear medicine with a focus on targeted radiopharmaceutical therapies. His research interests are focused on the translation of novel radioisotopes for imaging and therapy. He is involved with the Society of Nuclear Medicine and Molecular Imaging (SNMMI), and the North American Neuroendocrine Tumor Society (NANETS), among others. PRRT-RELATED TOXICITIES THOR HALFDANARSON, MD Professor of Oncology Mayo Clinic College of Medicine and Science Thor Halfdanarson, MD Mayo Clinic Dr. Halfdanarson is a professor of Oncology at the Mayo Clinic College of Medicine and Science and a consultant in Medical Oncology at the Mayo Clinic. He specializes in GI oncology with a focus on NETs and cancers of unknown primary, serves as the Associate Medical Director of the Cancer Clinical Trials Office at the Mayo Clinic Comprehensive Cancer Center and is the co-chair of the Pancreatic/Neuroendocrine Tumor Board. Dr. Halfdanarson is a member of the NCCN guidelines panel for NETs, the Co-Chair of the NET Group at Alliance for Clinical Trials in Oncology and the current Vice President of NANETS.ar medicine and molecular imaging. He is the inaugural chair of the Society of Nuclear Medicine and Molecular Imaging’s (SNMMI) Patient Advocacy Advisory Board, Board Member and Treasure of the Neuroendocrine Tumor Research Foundation (NETRF), a member of The Education and Research Foundation for Nuclear Medicine and Molecular Imaging (ERF) Board, and president of NorCal CarciNET Community, one of the largest NET patient communities in the United States. He is currently the sole patient rights advocate for the Nuclear Regulatory Commission’s Advisory Committee for the Medical Use of Isotopes (ACMUI).

Videos en Español < Back to Topics Play Video Play Video 20:24 Dr. Carina Mari Aparici “Lo ultimo en PRRT” en español Dr. Carina Mari Aparici shares the latest in PRRT in Spanish. Play Video Play Video 09:47 Historia del paciente - vivir con cancer neuroendocrino Michél vive con cáncer neuroendocrino. Escuche su historia inspiradora y cómo mantiene la esperanza. Gracias a Michél por compartir su inspiradora historia. Para obtener más información sobre el cáncer neuroendocrino, visite www.LACNETS.org. Play Video Play Video 19:53 Tratamientos de Tumores Neuroendocrinos: Terapias médicas y ensayos clínicos with Dr. Reidy-Lagunes Tratamientos de Tumores Neuroendocrinos: Terapias médicas y ensayos clínicos Presentadora: Diane Reidy-Lagunes, MD Oncólogo Médico, Memorial Sloan Kettering Para obtener más recursos en español, visite www.LACNETS.org/spanish-resources. Play Video Play Video 58:55 "Feocromocitomas y Paragangliomas" con Dr. Jaydira Del Rivero "Feocromocitomas y Paragangliomas" con Dr. Jaydira Del Rivero. Download a copy of the presentation slides here: bit.ly/3Mdj226 Presentadora: Jaydira Del Rivero, MD Endocrinologist, Oncologist; NIH Para obtener más recursos en español, visite www.LACNETS.org/spanish-resources. Play Video Play Video 45:02 "Manejo Sintomatico de los Tumores Neuroedocrinos Funcionales" con Dr. Jaydira Del Rivero "Manejo Sintomatico de los Tumores Neuroedocrinos Funcionales" con Dr. Jaydira Del Rivero Presentadora: Jaydira Del Rivero, MD Endocrinologist, Oncologist; NIH Para obtener más recursos en español, visite www.LACNETS.org/spanish-resources. Play Video Play Video 12:40 "Medicina Complementaria" con Dr. Narjust Duma (LACNETS) "Medicina Complementaria" Presentadora: Narjust Duma, MD Assistant Professor & Thoracic Oncologist; UW Madison Para obtener más recursos en español, visite www.LACNETS.org. Play Video Play Video 50:48 "Tratamiento de Tumores Neuroendocrinos Avanzados" con Jaydira Del Rivero (LACNETS) "Tratamiento de Tumores Neuroendocrinos Avanzados" Presentadora: Jaydira Del Rivero, MD Endocrinologist, Oncologist; NIH Para obtener más recursos en español, visite www.LACNETS.org. Play Video Play Video 04:46 Historia de un paciente (LACNETS) Historia de un paciente, Federico. Para obtener más recursos en español, visite www.LACNETS.org. Play Video Play Video 04:37 Historia de una cuidadora (LACNETS) Historia de una cuidadora, Gilda. Para obtener más recursos en español, visite www.LACNETS.org. Play Video Play Video 20:22 "Qué esperar de una consulta de expertos de NET" con Dr. Heloisa Soares (LACNETS) "Qué esperar de una consulta de expertos de NET" con Dr. Heloisa Soares (LACNETS) Presentadora: Heloisa Soares, MD, PhD Medical Oncologist; Huntsman Cancer Institute Para obtener más recursos en español, visite www.LACNETS.org. < Back to Topics Next Topic >

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