Search Results

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

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

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

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

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

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

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

You are never too old to set another goal or to dream a new dream. — C.S.Lewis New Year, New You? It’s the beginning of a new year! You may be considering a new year’s resolution, if you haven’t already made one. Merriam-Webster defines a New Year’s resolution as “a promise to do something differently in the new year.” Some resolve to change an undesired behavior, accomplish a personal goal, or otherwise improve their life. The ultimate hope is to live our best life. With or without cancer, we all want to thrive. If you choose to set a New Year’s resolution, here are some suggestions that might help. 1. Set an intention. Take a moment to simply breathe. Be inspired. 2. Choose an area of focus. Decide on one or two long-term goals. 3. Make the goal SMART to increase the chance of success. Specific – What are you trying to accomplish? Measurable – How do you know you’re making progress? Action-oriented – What specific action will you be doing ? To increase the chance for success, goals should involve taking a specific behavioral action. An outcome goal such as losing weight is not fully under our control. On the other hand, behavioral goals such as walking thirty minutes, five days a week is something we can control. Realistic – How doable or attainable is this goal? Time Bound – What is the timeline or target date? 4. Be accountable. Find a buddy. Ask a family, friend, or neighbor to check in and keep you accountable. Better yet, buddies striving to make the same changes often have increased success. Contract with a health coach . A health and wellness coach serves as a guide in learning to make sustainable change. 5. Be kind to yourself. Recognize that you may slip up. Try to allow yourself room to experiment, learn, and grow. You’ll get much more out of it than completing a black and white checklist measuring success or failure. When life happens, the goal may need to be revised to make it more realistic. Acknowledge successes and learnings. Celebrate wins. Reward yourself when you make progress and when you accomplish your goal. 6. Below are some ideas for NET-specific goals. Education Learn your NET Intro . Fill out or update your NET VITALS . If needed, watch the NET VITALS webinar . Attend a LACNETS monthly educational webinar or annual conference . Choose a NET-related topic of interest to you such as nutrition or a specific treatment. Watch related videos from the LACNETS YouTube channel . Listen to The LACNETS Podcast. Take NET quizzes after listening to NETRF’s NETWise podcasts . Read the NETRF’s neuroendocrine cancer guide which can be requested here ( US residents only ). Read the Healing NET Foundation’s “Navigating the NET Patient Journey Guide or High-Grade Neuroendocrine Cancer Guide. Learn more about health insurance, finances, estate planning, or disability by attending a free educational event , watching animated videos , or reading educational materials by Triage Cancer . Community & Support Attend the LACNETS weekly virtual support group. Request a NETCONNECT mentor. Find a therapist through a local Cancer Support Community . Partner with a health and wellness coach . Awareness & Advocacy Share a packet of patient and provider resources from the Ask Me About NETs Challenge with your local medical providers. Read our Spreading NET Awareness blog article . Bring NET materials such as your NET VITALS, the LACNETS rack cards, and copies of the Healing NET Foundation NET Primer to your NET-related appointments. Find a champion at your local medical facility who would be open to ensuring NET-related information such as LACNETS rack cards will be displayed or distributed. Share your story with family, friends, neighbors! Service Attend support group meetings to connect and share your story with other NET patients and loved ones. Volunteer with your local support group. Fundraise by setting up your own Facebook fundraiser or organizing your own fundraiser. Whatever your New Year’s resolution may be, we wish you all the best! You’re welcome to share your resolutions in the comment section below. THANKS TO OUR SPONSORS Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

“Educated patients tend to be happier patients as they have better expectations and feel more comfortable navigating this journey.” — Dr. Tom Hope, UCSF radiologist and nuclear medicine physician We agree with you, Dr. Hope! Knowledge is POWER! While we could go on and on as to why it's important to attend NET conferences, we compiled a list of what we felt are the top and most important reasons to participate: LEARN from NET experts. Build your knowledge & understand more about the disease. Learn about current therapies from the medical community. Get your questions answered. LEARN from other NET patients and caregivers. Be encouraged and inspired by hearing from others who want to take charge of their disease, their health, and their lives. Know you are not alone! Learn from the experiences and insights of others. Be EMPOWERED to be a better partner in your NET journey. UNDERSTAND how to cope with the emotional challenges of living with NET. DISCOVER ways to increase public awareness of the disease. We invite you to join us for our 2022 LACNETS NET Patient Education Conference on Saturday, June 18. The conference is offered at no cost to attendees. This virtual event features: 10 NET experts Live Q&A with the experts Patient stories Educational presentations for both the newly-diagnosed and for zebras who have lived with NET for a long time This year's theme is " Empowering You to Make NET Decisions ." NET patients and caregivers are constantly wrestling with decisions. Our goal is to share the latest in treatments and research to empower and support you. There are several NET Patient Conferences and events each year that take place throughout the country. Click here to learn about upcoming Conferences and events. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

“Does it spark joy?” This is the central question of the widely popular Kondo organization method from Marie Kondo’s best-selling 2014 book The Life-Changing Magic of Tidying Up . The popular Netflix show Tidying Up with Marie Kondo swept the nation with a wave of decluttering. Donation centers overflowed. Social media feeds showed off newly decluttered homes. Kondo’s famous question, “What sparks joy?” is an exercise in assessing the value of our household belongings in order to let go and get rid of “clutter.” Stuff not only takes up space but also can be mentally distracting and emotionally distressing. If something is no longer serving us, Kondo invites us to take a moment to thank the item for its service, and then let it go. The Konmari method is a gratitude practice that begins with greeting and thanking the house itself upon entering and ends with bidding farewell to things that no longer spark joy. The result of a decluttered home is a freer body, mind, and spirit. DECLUTTERING & CANCER With the stress of living with neuroendocrine cancer or caring for someone who does, cleaning out the metaphorical closet might be the last thing we feel like doing. Overwhelmed by doctor’s appointments, scans, monthly injections, researching and learning about the disease, and managing the symptoms, the sheer act of making a decision sometimes feels near-impossible. This is because the diagnosis of cancer or news of recent progression is traumatic. The traumatized mind wants to cling to things that give a sense of stability, structure, and safety, making it exceedingly more difficult to identify and let go of “clutter,” whether that is physical, mental, or emotional. Other than physical possessions, what else is no longer serving us? What “clutter” might not be serving us? What has become unnecessary “clutter” in our minds and spirits? A cancer diagnosis provides an opportunity to re-evaluate one’s priorities and let go of commitments that may be less important. Perhaps this might involve releasing time commitments, career ambitions, old habits, or relationships. Or maybe it means letting go of certain pressures and expectations you have of yourself. Letting go of clutter creates space for possibilities that spark joy. SPARKING JOY Here are some ideas of ways to explore possibilities that might spark joy in your life: Taking up a new hobby Engaging in spiritual practices Exploring a city with a free tour by foot Listening to music (such as original compositions by NET patients Giovanna Joyce Imbesi and Tom Bajoras ) Laughing (with NET patient and comedian Steve Mazan ) Visiting museums (click here to discover SoCal museums – free!) Attending cultural events ( TodayTix ) is one way to access discount tickets for shows.) Watching FREE Hollywood Bowl Rehearsals . Call 323-850-2000 for a rehearsal schedule. Traveling NETRF shares some helpful travel tips for cancer patients here . Checking out your local medical institution or cancer support centers for free healthy lifestyle classes. Simms Mann UCLA Center for Integrative Oncology offers supportive programs open to all (including non-UCLA patients) such as Healing Through Art and Circle of Reflection. Cancer Support Community offers virtual classes including yoga, t’ai chi, reiki, Zumba, nordic walking, circle singing. They also offer adult social activities such as watercolor painting, creative crafting, writing, and cinema wellness. SoCal locations include: WestLA Pasadena Westlake Village Tower Cancer Research Foundation offers FREE virtual sound healing Meditation, group movement, yoga, and exercise classes. Connecting through personal stories with other NET patients: Read LACNETS “Be Inspired” blogpost, published December 19, 2018 Watch inspiring stories from NET patient and caregiver Enjoy Carcinoid Cancer Foundation’s 50th Anniversary video series featuring NET patient stories SPARKING JOY THROUGH COMMUNITY We at LACNETS desire to provide a community of support and education for those with neuroendocrine cancer. We offer a safe place to share our experiences and learn from each other. Community is a wonderful way to explore new possibilities of finding joy. While summer might signify vacation for many, we understand that cancer doesn’t take a vacation. Neither do we! We hope you can join us for one of our upcoming webinars and virtual support groups. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

I never received a manual on how to be a caregiver. — Lisa Yen Becoming a caregiver to someone living with NET cancer looks different for each person. Some embrace this role enthusiastically, while others assume it reluctantly. The relationship with the NET patient may be that of a spouse, sibling, parent, child, relative, or friend. The responsibilities of a caregiver vary and may include physical care, advocacy, research, navigation, collaboration, education, logistics, or communication. (For simplicity, we will use the term “caregiver.”) The common thread is that NET caregivers are vital in supporting a loved one living with NET. This is my story… January 2, 2015 was the day my life was forever changed. That was the day my husband was unexpectedly hospitalized for the first time in his life. Overnight, I took on a new role—caregiver to my husband. I suddenly stopped worrying about everything that used to worry me – big, important things including my career, goals, and ambitions. I also stopped sweating the small stuff—turning 40 with increasing white hairs and unmet goals. It all faded away. What mattered to me became crystal clear. I was 100% committed to walking alongside my husband and supporting him in his NET cancer journey. Although I knew who was most important, I didn’t always know how to best care for my husband. I never received a manual on how to be a caregiver. There have been periods where I’m unable to consult with my husband when he’s simply been too ill. There have been other times when I focused on physical or medical needs and missed the emotional support he longed for. While it’s been a challenge for both of us to learn about NET and how to live with a cancer diagnosis, I recognize that I’ve also been on a separate journey of discovering how to best care for someone living with NET. It’s complicated and ever-changing, full of nuances and shifting roles and responsibilities. It cultivates patience and sensitivity. It deepens intimacy. It’s both hard and rewarding. I could never have imagined I would be in this place. Yet, I’m certain that if my husband must live with NET, there’s no other place I’d rather be than by his side. Many of us serve as partners in the NET journey and yet, our journeys are also our own. LACNETS understands that NET caregivers need care too and so, we are committed to addressing their unique needs. Caregivers often grapple with identity, self-care, and isolation. Caregivers may have questions such as, “Do other people struggle with the same things I’m struggling with and if so, how do they handle it?", “Who can I talk to about my concerns?”, and “How can I be a better caregiver?” We at LACNETS desire to support caregivers by providing opportunities for them to discuss their concerns and experiences. To this end, we invite you to join us for our monthly virtual support group for NET caregivers. This is a 2-hour private forum just for caregivers facilitated by palliative care physician Dr. Chandana Banerjee and psychiatrist Dr. Kim Shapiro. Our meetings are typically held on the last Saturday of every month. RSVP by clicking here. One of the most important lessons I’ve learned in becoming a caregiver is that self-care is now part of the job. It’s no longer optional; it’s essential. Self-care includes receiving our own support and connecting with others with similar struggles. Sharing experiences and insights with others builds inner strength and resilience. We might still not have a manual for how to be NET caregivers, but we have each other. And together, we are stronger. For caregiver resources, visit our LACNETS caregiver page . Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

Many NET patients undergo surgery as part of their treatment course. While their medical team might have specific preparation instructions, patients often wonder about practical concerns like how to plan, what to pack, and how to prepare the home. Recently, this topic has come up in our weekly virtual support group and we have had some lively discussions based on first-hand patient and caregiver experiences. (Note: These suggestions do not replace instructions given to you by your medical team.) PREPARE PHYSICALLY Prepare for Surgery: Eat a balanced diet of nutritious foods. This is not the time to start dieting! Hydrate. Make sure you’re drinking plenty of water. Movement matters. Being physically active prior to your surgery can help your recovery Tell your doctor all the medications, vitamins, and supplements you take, as some might increase the risk of heart problems or bleeding issues, or they might affect your anesthesia. You may need to stop taking them 1-2 weeks before the operation. Be honest with your doctor. You might not think your supplements and complementary treatments don’t matter to your surgeon, but they do! Prepare for the Hospital Stay: Prior to surgery, find out the visiting hours and rules. How many visitors do they allow at a time? Is there an age restriction? Can someone stay overnight? Find out when shift changes occur so that you can ask for pain medications before shift changes and warn family members not to call during that time. Have a consultation prior to surgery with your anesthesiologist to discuss your anesthesia and pain management following surgery. Find out who will be managing your pain after surgery and talk with them. You may need to ask for a referral to the pain management team. Manage expectations with work and friends so you are not inundated with emails and text messages. Set up an “out of office” or “away from my desk” notification on email, phone, and social media. It’s helpful to have a way to tell people nicely not to contact you and to not expect a response immediately after your surgery. If you have a friend or family member coordinating communication, let your support team know how to expect updates. Write down your medical team (name, specialty/position/role). The names of your physician, nurse, and aide should be written somewhere visible in your room. Consider filling out employee recognition cards for staff who give exemplary care. This is one of the best ways you can show gratitude for a job well done. Note: If you have a family member or friend at your bedside, this is a task you may delegate. Write things down on paper or on your phone. Sleep deprivation, pain, and excess stimuli may make it hard to remember names and details clearly. Note: If you have a family member or friend at your bedside, this is a task you may delegate. Have family or friends purchase food (e.g. bagels, cookies, donuts) for nurses and bring the items when they visit for the nursing staff. An alternative is pre-purchasing shelf-stable snacks in advance of your surgery for your visitors to bring with them. Thank people often. If you receive flowers, send them home with family members when they visit or consider leaving them for the hospital staff. Packing for Surgery: Pack a small bag for the hospital and have your family bring these items the day after your surgery or keep them in the car. It is best to minimize the items your family has with them in the waiting room with them during your surgery because it may be difficult for them to go to the cafeteria or take a walk outside if they will need to bring your belongings with them wherever they go. Because you usually are not assigned a room until after surgery, you may be in the recovery room or in the intensive care unit where you may not be able to have a lot of belongings with you. Limit the items you have with you at the hospital and send items home with your family if you don’t need them. Suggested packing list: Earbuds (noise cancelling, if preferred) Long charger for phone/electronics Eye mask Earplugs Loose fitting shorts, cozy robe/elastic pants Soft front closing bras Flexible straws, so you don’t need to sit up to take pain pills Items that will bring comfort, e.g a pillow (make sure to have a very distinct pillowcase so it is not mistaken for a hospital pillow) and scents like lavender sachets Nonslip slippers with good grip A notebook to write things down Prepare for Your Return Home: Consider your mobility, pain, and symptoms you might be experiencing after surgery and prepare your home to have items you need on hand, conserve your energy, and prioritize your recovery. Prepare your caregiver list and schedule for after you return home. Consider setting up a meal service or meal delivery from friends and family. Invite a friend, neighbor, or family member to coordinate deliveries to a cooler on your front porch so that you don’t feel obligated to visit with each person. Find out what diet you will be on after surgery so you can purchase appropriate foods or prep meals prior to surgery. Stock your fridge, freezer, pantry with food. Stock up on nutritious foods. Plan for small, frequent meals and lots of fluids. Stock your house with household supplies. Stock your medicine cabinet with over the counter pain medications such as acetaminophen and over the counter stool softeners and laxatives. Plan a system to call for help such as flic buttons or using a hand bell. Consider assistive devices such as a reacher-grabber. Count how many steps you have to enter your home and inside your home. You can ask to see a physical therapist and practice walking up and down stairs before you are released home from the hospital. Movement, hydration, nutrition, and pain control are important to recovery. Narcotics cause constipation so it is important to hydrate and move. You may also need to take stool softeners or mild laxatives. 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. PREPARE EMOTIONALLY Be prepared to speak up or have someone present who can advocate on your behalf if you have concerns, issues with managing your pain, or difficulty communicating with your medical team. Prepare a music playlist with healing music. Here are a couple albums of instrumental music written by NET patients while they were recovering from surgery: Short Stories - piano music for healing, meditation & relaxation by LACNETS Founder and Executive Director Emeritus Giovanna Joyce Imbesi Surprised By Beauty by NET patient Tom Bajoras Practice mind-body techniques such as mindfulness, breathing, or visualization exercises Belleruth Naparstek has guided meditations to promote successful surgery Peggy Huddleston has a mind-body workshop called “Prepare for Surgery, Heal Faster” LACNETS offers guided meditation and gentle yoga videos UCLA Mindfulness Awareness Research Center offers free programming and resources including the UCLA Mindful App . Insight Timer is a free app with a large library of free guided meditations. Have an honest discussion with your loved ones about your expectations and their expectations. Make sure your caregiver(s) know ahead of time what their roles are. If you are married, it is important not to assume that your spouse will be filling all those roles. Learn to ask for and accept help. Watch this video, “How to Ask For, Accept, and Get the Help you Need” with Kim Hamer. Set realistic expectations. After your surgery, take it SLOW. Listen to your body. There is no need to rush. Know that there will be good days and bad days. The road to recovery isn’t always a straight path. Patients often report that the road to recovery takes longer than they expected. The surgeon might say recovery will take 6-8 weeks; however, this is often the time it takes for the tissues and skin to heal. It may take more time to feel like you are back to what feels normal for you. Take the time the surgeon gives you as an optimistic goal, but don’t be disappointed (especially in yourself) if it ends up taking longer than you expected. Take small steps. Give yourself grace. Special thanks to the LACNETS weekly support group for their contribution to this blogpost WATCH: “NET Surgery: Making Decisions & Preparing for Surgery” featuring Dr. Callisia Clarke WATCH: "Surgery for NETs" featuring NET surgeon Dr. Alexandra Gangi This blog is for educational purposes only. Please consult your medical team about your individual care and treatment plan. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS