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News reports of neuroendocrine cancer (also known as neuroendocrine tumor or NET) have often been about famous people such as Aretha Franklin who died from the disease last year. Oftentimes, reports of famous celebrity deaths such as Aretha Franklin or Steve Jobs are the first time people hear about NET. Last week, we learned that Senator Bernie Sanders lost his daughter-in-law Raine Riggs to neuroendocrine cancer. Sadly, she passed away just two days after receiving a diagnosis of neuroendocrine cancer at the age of 48. These deaths then serve as a reference point for the disease to the general public. This means that when we talk about NET, we might say something like “it’s the same type of cancer that Aretha Franklin had.” While these stories increase awareness about NET, we acknowledge that they can be disturbing to NET patients and caregivers. They are unpleasant reminders that NET is unpredictable and rarely curable, and that, sadly, people do in fact pass away from the disease. Such news can be shocking to those struggling to hold onto optimism and hope. We, the NET community, want to shift the focus from dying from NET to living with NET. We want to change this narrative so that people associate NET with living with the disease rather than dying from it. Living with the disease is our reality. With increasing awareness, improved diagnostics for earlier and more accurate detection, and more treatment options, we believe that more and more people will live with NET. This month, there are two ways YOU can help to change the narrative about NET! First, you have the opportunity to make an impact by simply taking a survey called SCAN . By participating, you will join collaborative efforts to collect data from the NET community in order to identify and address gaps in care. Your voice matters! By participating in the survey, you can help identify challenges in access to diagnostics and treatment for NET patients! Under the motto We SCAN, the International Neuroendocrine Cancer Alliance invites NET patients, caregivers, and healthcare providers to share their perspectives of NET. The goal of the survey is to collect robust global data and answer key questions related to awareness and availability of NET diagnostics and treatments worldwide versus the out-of-pocket costs for those living with NETs. Mapping the access challenges worldwide from both the patients’ and healthcare professionals’ perspectives will help the NET community build a strong argument about global equity. The survey is available in 14 languages and can be completed by clicking here until October 31, 2019. Data from the survey will be initially disseminated around World NET Cancer Day, November 10th. SCAN results will be showcased at medical conferences, published in medical journals, presented at meetings with the decision-makers in the healthcare field to focus attention on the gaps in access to early diagnosis, treatment and optimal care globally. Second, we can do this by sharing our stories about what it means to live with NET. One tangible way to share your story is to join the Healing NET Tapestry Project. The Healing NET Foundation is collecting written stories, photos, and videos from patients, caregivers, healthcare providers, or any other person supporting better care to the NET community to share on social media to bring awareness to NET cancer. The deadline to contribute is World NET Cancer Day , November 10, 2019. Join us for the LACNETS NET Cancer Day Symposium on Sunday November 10th at City of Hope. (Read our previous NET Cancer Day blogpost here ).

Perhaps you’ve had this experience…you’re seeing a healthcare provider (nurse, physician, imaging technician, lab technician for example) and they aren’t familiar with neuroendocrine cancer (aka neuroendocrine tumor or NET). Even mentioning Steve Jobs or Aretha Franklin gets the response “I thought they had pancreatic cancer.” Or you’re talking with friends who have never heard of NET. Part of our experience of living with a rare cancer – and a mostly invisible disease at that – is having the opportunity to help educate others about NET and increase awareness. Why does greater awareness matter? I think back to my original symptoms that started around the year 1999 when I was forty-two years old. Severe abdominal pain and bloating led me to the closest ER where I was given morphine to ease the pain. I thought I had food poisoning and didn’t think anything else of it. When it happened again a few months later, the same experience repeated: morphine in ER, return home, and rest. My primary care physician referred me to a gastrointestinal (GI) specialist. I was given a prescription for an anti-spasmodic and sent home. The abdominal pain/bloating/ER cycle happened repeatedly over a period of six years without any orders for imaging until another GI physician ordered a CT scan which led to my diagnosis. It turns out my small intestine was partially obstructed by a slow-growing tumor that had metastasized to my liver. NET patients had an average of almost twelve healthcare visits before being properly diagnosed. Unfortunately, my story is not uncommon. The Global NET Patient Survey published by the International Neuroendocrine Cancer Alliance (INCA) revealed some statistics regarding the number of years from onset of symptoms to diagnosis and the number of healthcare professionals seen before receiving a diagnosis. In the survey, the average number of years from onset of symptoms to diagnosis is fifty-two months! Sadly, 58% are metastatic at the time of diagnosis. NET patients had an average of almost twelve healthcare visits before being properly diagnosed. Each one of us has the ability to help change those numbers in our own community. There are opportunities to share more about NET and add one more person to the extended global family of NET awareness. Consider how we might work together to complete this cycle: For those of us who have gone through a period of misdiagnosis, we know all too well how important this communication is. Here are some suggested ideas, starting with healthcare providers. Please send us your suggestions so we can make this a more NET-friendly world and help others get diagnosed early in their disease. 1. Bring NET materials to your physicians and healthcare providers. The Healing NET Foundation offers a “ Neuroendocrine Tumors: A Primer for Healthcare Professionals. " This booklet summarizes NET information, ways to recognize it and treat it. Bring a copy to all of your appointments as a way to help communicate with your providers. LACNETS Rack Cards – These cards contain information on LACNETS with links to the LACNETS website for educational videos and resources. If you’d like rack cards shipped directly to you, please email events@LACNETS.org. NET VITALS – This is a communication tool for physicians & patients with the top 20 questions vital to understanding neuroendocrine cancer. It is helpful for patients to understand NET terminology and for physicians to learn important terms in treating NET patients. Fill it out and bring your completed NET VITALS to your appointment(s)! 2. Invite your healthcare providers to a LACNETS monthly meeting. 3. Fundraising! Let's get creative! Social Media - Creating a fundraiser on Facebook is super easy and a great way to reach a wide audience. Create one for your birthday, special occasion, or just because it will help people understand neuroendocrine cancer! In 3 easy steps, you can set up a Fundraising Campaign . Start by searching for LACNETS in the list of non-profits. Community events Ask your favorite local business if they will support a NET Awareness Day by contributing a percentage of sales. Hold a bake sale on your block . Share your story! If you’re open to being public about your NET experience, these personal stories are often the most touching and remembered articles and videos. Don’t forget to reach out to your local TV station, newspaper organization and local medical organizations to represent NET! Some good places to start: NET Research Foundation - Patient Stories Healing NET Foundation - Tell Your Story Carcinoid Cancer Foundation - Survival Stories We can do this together! And truly make a difference! One of the most heartwarming experiences of the LACNETS meetings is reaching more patients. The stories of patients meeting other patients, meeting new friends and sharing their journeys inspire others. Sometimes, a NET patient’s spouse or family member might attend a LACNETS meeting alone and then bring the person living with NET to a later meeting. We are always grateful to learn that we have helped in their medical journey. Let’s complete the circle and give back to our healthcare professionals by sharing everything we’ve learned! Towards a more NET-fluent world. A gift of any size supports LACNETS’ free of charge programs and services. LACNETS is a 501(c)3 non-profit. Donations are tax-deductible. Tax ID # 20-0062062. Written by Giovanna Joyce Imbesi LACNETS Founder & Patient Advocate

Change. Change is inevitable, happening daily and in the moment. A delayed flight, change in schedule, unexpected detours. Recently, SoCal had back-to-back earthquakes which literally shook us awake with no advance notice. As patients, we think, "What body will I wake up with tomorrow? Will the pain that was in one place now be in another place? Will my symptoms be better or worse?" We measure change in millimeters with every scan—smaller, bigger, stable. More, less, within normal range, out of range. Some of this is within our control. So much is not in our control. Yet, we insist on resisting change, wanting everything to be the same, steady, manageable, predictable. This is where the conflict comes in – we’re trying to control something that cannot be controlled. As a result, we’re unhappy and we suffer. As neuroendocrine cancer patients, many of us are looking for coping strategies. We need to learn to cope because this is not a quick sidestep through one medical procedure, but years and years of living with cancer. As I’m coming up on my 14th anniversary of being diagnosed in 2005, I’d like to share some of the coping strategies that have helped me throughout these years. Making friends with change The biggest change for most of us as cancer patients was that moment when we were told we had cancer. In a completely incomprehensible whirl of medical terms, many describe that moment where we stopped listening, frozen in this new reality and what it might mean. We may recall hearing that neuroendocrine cancer is a manageable disease. This is the beginning of a long relationship with change – change in our bodies, change in our perspective on life and what really matters. For many, it’s also the beginning of loss – loss of previous roles in careers, in the family and with friends. Accepting what is -- Accepting change Some may recall the name Ram Dass , author of “Be Here Now” first published in the 1970’s. Ram Dass coined the phrase ‘making friends with change’ and spoke about this back in the 90’s. This talk addresses these concepts of allowing and accepting change as inevitable. Being in the moment and being present. Later, after Ram Dass suffered a heart attack, he writes again about accepting change, now living in a wheelchair, and one important point in particular about being dependent on others for assistance. Practice: First, start by noticing when there is a change in your life. Notice how you feel when something unexpected happens, or something you thought would be one way is now different. Tightness, anxiety, resistance? Then try to relax and just be present to the change and notice it, allow it. It could be worse Recently, I heard a TEDx talk by Michael Eselun , oncology chaplain at UCLA Simms Mann. He spoke about compassion and related how so many people he speaks with find the framework of ‘it could be worse’ to be comforting. At least it’s not ________. Fill in the blank. It could have been ________, but it’s only _______. We all tend to do this reframing, and it does give a certain amount of comfort. Which is really gratitude disguised as ‘it could be worse.’ Thank goodness it’s not THAT. Many NET patients may have been told at the beginning of their cancer journey that neuroendocrine cancer is typically slow growing. The implied sentiment is ‘it could be worse,’ another more aggressive cancer. As so many NET patients do, we go to the cancer center for our monthly somatostatin analog injections. It can be a difficult experience, seeing so many cancer patients of all ages. The ‘it could be worse’ thought always comes up for me, especially on months where I’m fortunate enough to get my shot and leave. I feel so grateful to just get my shot and exit the building, back to independent life. As humans, we’re pretty adept at adjusting this sense of better and worse. What we might have thought of as unfathomable in our pre-cancer diagnosis life, we now are thankful for, be it a medication or procedure. Finding Joy through the Door of Gratitude After my initial NET surgery back in 2005, I would evaluate each day with two questions: Am I in pain? Can I eat? If the answers to these two questions were ‘no’ and ‘yes,’ I would declare it a good day! Learning to appreciate even the most basic foundations of pain and nourishment became my mantra. When everything is stripped away (as so much is post-surgery) and the healing process begins, it can seem like so much has been lost. Opening to a new perspective of appreciating what IS good can be life-saving. Appreciation for the small things such as breathing easily and walking slowly. The shift in perspective of actually focusing on the positive is life-enforcing. Perspective Recently, I was sitting in heavy Los Angeles rush-hour traffic, not moving at all waiting to turn onto the Pacific Coast Highway heading north. Looking around, everyone appeared frustrated and agitated, honking to try to edge their way forward in competition. I was smiling from ear to ear, completely ecstatic to be sitting there in traffic and noticing the beautiful blue ocean more than the snarl of cars surrounding me. Just hours earlier, I had been discharged from a 3-day hospital stay and I was so grateful to be 'free,' driving and independent. I took notice of how I was likely the only one so happy to be in standstill traffic. Perspective can alter our interpretation of what comes at us in life. It makes the difference in finding our way on any given day and choosing to notice the good versus the bad and experience joy. As someone who has been living with neuroendocrine cancer for almost 14 years, this distinction has become an essential ingredient in beginning each new day and sustaining the will to live. Connectedness – Investing in our Relationship 401K With all this uncertainty and living with the unknown, our priorities may shift. If you were to write down your top three priorities in life, what would they be? And in what order? For many of us, health and access to excellent healthcare is certainly one. Living with neuroendocrine cancer, a rare disease, can present its own challenges. How do we find community? How do we find expert medical professionals who have experience with NET? In the absence of a general protocol, we are seeking answers from each other as patients and caregivers. Coming together to relate our shared experiences can help take away some of the unknown and offer comfort. Learning from patients who have been living with NET for some years. For some, it’s learning how to manage the multitude of decisions. For others, learning how to live with cancer and be with children. Some partners lean in and become a true companion in the cancer experience. Others find it difficult to relate and pull away. Lifelong friends many not understand how to be there. And in many cases, we’re not talking about the urgency of a few weeks, but truly being there for years and years. Essentially, we’re investing in a different type of 401K – our Relationship 401K. Finding our community through family and friends then makes so many of the other unknowns easier to manage. Ultimately, we may find that what truly matters is our sense of belonging and connectedness. Especially when our former roles of belonging may have shifted. Psychologist and meditation teacher Tara Brach often speaks about belonging. There is research showing that people with strong community ties live longer. As cancer patients with a rare cancer, we may feel isolated. And confused as friends say “But you look so good!” Many cancer centers are recognizing the significant impact of cancer on social aspects of life and relationships. Some offer guides and recommend support groups. Some offer wellness classes and groups such as the GRACE program . For people who are facing profound moments in their life, there is a way in which they will open to truth in a way that people who think they’re winning don’t. — Ram Dass At LACNETS , we strive to provide a social home, a community where stories can be shared with others who can truly relate to all we go through with living with NET. Our monthly programs during the year often focus on medical information from NET experts as well as providing a place of gathering and time to meet new friends. RESOURCE LINKS: Ram Dass Making Friends with Change talk Michael Eselun TEDx Talk: Michael Eselun, oncology chaplain, UCLA Simms Mann - Talk on compassion as a recipient of the 2019 Semel Institute Eudaimonia Award Circle of Reflection support group with Michael Eselun @ UCLA Simms Mann TED talk: Ingrid Fetell Lee “Where Joy Hides and How To Find It” Wellness, Resilience & Survivorship Programs @ Cedars-Sinai Programs for Patients Living with Cancer @ City of Hope Forest Bathing - Shinrin Roku RECOMMENDED READING: “The Five Invitations – Discovering What Death Can Teach Us About Living Fully” - Author Frank Ostaseski Written by Giovanna Joyce Imbesi LACNETS Founder & Patient Advocate

There seemed to be a renewed sense of community, of people connecting and meeting. These were things we hoped would happen by attending in person. People commented it was uplifting and inspiring, and even FUN - something not easy to do at a cancer conference! — Giovanna Imbesi, LACNETS Executive Director On Saturday, June 8th, the Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS) presented the 2019 Annual Los Angeles Neuroendocrine Tumor Patient Education Conference in coordination with Cedars-Sinai Samuel Oschin Comprehensive Cancer Institute, City of Hope, and UCLA Health at Cedars-Sinai Medical Center. Each participant was given a tote bag, printed with the LACNETS motto, “ Connect, Learn, Thrive .” CONNECT People had opportunities to mingle and connect with others. Prior to arriving at the conference, first time attendees were welcomed by peer mentors from the NETCONNECT team. Lunchtime roundtable discussions offered opportunities to ask NET experts questions in an intimate, informal setting. Photo: NETCONNECT Team LEARN The theme of the conference was “ More Options, Better Decisions .” Presentations from NET experts describing the latest advances in NET including surgical options, liver-directed therapies, and PRRT offered hopeful treatment options. THRIVE We laughed and we cried. Andie Bolt, a comedian, emcee, and daughter of a NET patient, kept the audience laughing. The surprise tribute and presentation of the Cedars-Sinai Patient Leadership Award to LACNETS Executive Director Giovanna Imbesi moved many of us to tears. Photo: Andie Bolt & Terry Bolt While the 2019 Annual Los Angeles Neuroendocrine Tumor Patient Education Conference may be over, our mission is not. We invite you to continue to connect, learn, and thrive along with us. WATCH videos from the conference on our LACNETS YouTube Channel . LEARN MORE about radiation safety, nuclear medicine imaging (i.e. Gallium68 scans) and treatment (PRRT) at the annual SNMMI Patient Education Day . Hear from world-renowned experts such as Dr. Richard Baum from Bad Berka Germany, Dr. George Fisher from Stanford, Dr. Erik Mittra from Oregon Health & Science University, and Administrative Nurse Linda Gardner from UCLA Health. For those unable to attend, Josh Mailman will livestream the event . JOIN US at upcoming LACNETS monthly meetings. CONTRIBUTE to future meetings, programs, and conferences. ( LACNETS is a 501©(3) organization) . If you’ve enjoyed and benefited from the LACNETS Annual conference, monthly meetings, programs, or educational blogs, please consider making a tax-deductible donation . Your generous support makes it possible to hear from NET experts, livestream and videotape presentations, and increase our reach to those whose lives have been touched by NET. We are deeply grateful for your contribution. I’ve been living with neuroendocrine cancer for 9 years and this is the first time I’ve ever met other patients. I feel like I’ve found my new family and it’s so good to know there is support. — Patient Attendee from outside California Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

With the LA marathon just around the corner, we dedicate this 3-part series to “NET marathon training.” This is because people often compare living with NET to running a marathon rather than a sprint. Marathon Training Part 1 addressed understanding the race and proper pacing. We explained the science behind the stress, specifically the body’s response to stress by releasing stress hormones to perceived threats that cause the body to break into a sprint. In Marathon Training Part 2 , we introduced a strategy to slow our pace and build resilience to sustain an endurance run. The strategy is to train our bodies to respond to stress differently. It involves understanding your own unique stress by breaking it down into its common elements: N ovelty, U npredictability, T hreat to ego, and S ense of no control. After deconstructing your stress, the next step is to reconstruct the stress by training your body to interpret the stressor differently. In this third and final part of our NET marathon training series, we will discuss rest and recovery. While putting in mileage (i.e., education, research, medical appointments) is important in marathon training, there is also an art to recovery. While we suggest different techniques, there isn’t a one-size that fits all. Just as each runner has a unique gait and stride, each person living with NET has individual needs and different responses to stress-reduction techniques. There isn’t one right way to de-stress. Unfortunately, there simply isn’t a quick fix. Avoiding the stressor also doesn’t work. The important thing is that you find constructive ways to de-stress that work best for you. STRESS RECOVERY TECHNIQUES & TOOLS 1. Talk it out: Empathy helps Find people to talk to. To be more specific, find the right people to talk to. Find people that you feel safe talking to, people that you feel can provide the type of empathy and support you need. Here are a few suggestions: Join a local educational/support group. Click here for a directory of NET support groups. If you are in the Los Angeles area, we encourage you to join LACNETS at our monthly meetings and educational events . Joining our meetings remotely via LACNETS Facebook or LACNETS YouTube . Watching the recordings at a later time on the LACNETS YouTube Channel is also an option. Connect with others online. Click here for a directory of online support and discussion groups. Circle of Reflection at Simms/Mann-UCLA Center for Integrative Oncology Cancer Support Community provides online and in-person support services. Counseling: Cancer Support Community Ask your oncologist for a referral. To learn more about counseling, click here . 2. Mindfulness & Meditation: Pause and find an anchor. Allow your breath to be your anchor. Taking a moment to focus on your breath can help set your intention on how you run the race. Focusing on your breath helps slow down the rate of your breathing and pulse, resulting in a more sustainable pace. If you’re a religious or a spiritual person, carve out time for prayer and other spiritual practices. Mindfulness and meditation resources can be found here . 3. Pets: Find a furry friend. Learn about pet adoption from Petfinder or Shelter Pet Project. If you don’t own a pet, consider volunteering to walk or transport dogs with a local rescue organization like Wags & Walks in West LA. 4. Art: Tap into your creativity. Try art therapy at places such as Cancer Support Community . Color in a coloring book. Paint with finger paint or watercolors. Join a paint party at a place such as Painting with a Twist . Take a pottery class at a place like Color Me Mine . Journal or write poetry. 5. Move: Get up and move. Go for a walk. Dance to your favorite music. Explore a new place. Garden. Try a new activity. 6. Play: Let your inner child out Blow bubbles. Splash in the ocean. Play a musical instrument. You don’t need to have musical talent. Strum a guitar or ukulele, beat on a drum, clang a cymbal, or blow into a harmonica. 7. Listen: Music heals. “ Give Me Peace ” and “ Hush ” are composed and produced by our very own Giovanna Joyce Imbesi. “ Surprised By Beauty ” is music composed by Tom Bajoras since his diagnosis with NET. The music is inspired by experiences of surprising encounters with beauty amid suffering. 8. Laughter: Laughter is great medicine. Laugh with the NET patient and comedian Steve Mazan . As you run your race, know that you’re not in this alone. Look around and see the others running alongside you and others cheering from the sidelines. You’ve got this! Living with NET is a marathon, not a sprint. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

In honor of the upcoming LA marathon, we address what it means when people say that living with NET is like running a marathon rather than a sprint. In Marathon Training Part 1 of the 3-part series, we laid the groundwork for a proper understanding of the race including an overview of the science behind stress. The natural stress response causes the body to take off in an all-out, high-intensity sprint that inevitably leads to fatigue and exhaustion. We discovered that the key to slowing our sprint to a sustainable pace for an endurance race is to learn how to influence our body’s interpretation of the stressor. In this article, we introduce a new strategy of re-training our body’s natural response to stress. We take the offensive against our stress by first understanding our own individual response to stress, so we can then change the way we react. This involves breaking down the stress into its basic ingredients in order to analyze them. You see, for a situation to be stressful and cause the release of stress hormones, the body interprets that it contains one or more of the following ingredients(1): Stress makes us NUTS: Novelty, Unpredictability, Threat to the ego, Sense of control (2). The goal is to understand why a particular stressor affects you the way it does. By breaking the stress down into its parts, we gain insight and understanding. Stress is highly personal and individual. Though there might be similarities, each person’s experience of stress is unique. Common stress ingredients for NET patients might look like this: Novelty “I was never sick before.” “ I’ve never been to the doctor’s before.” “I’ve never had surgery before.” “I’ve never heard of these medical terms before.” Being diagnosed with cancer, not to mention a rare one, is certainly new on many levels. Many report their diagnosis with NET as their first time encountering health issues. There are numerous elements of stress from being thrown into a whole new world—being a patient, navigating the medical system, and learning how to speak "NET lingo.” Feelings of helplessness, insecurity, grief, fear, and loss may arise. Unpredictability “It just seemed to come out of nowhere.” “How do I know what the best treatment is for me?” “What will my next scan show?” “I wish someone could tell me what I can expect.” Not only is the disease course unpredictable, but the fact that there is no clear path ahead is one of the greatest sources of stress for NET patients. Threat to the ego “Did I do something to cause this?” “I used to be strong and healthy. Now I feel like I’m falling apart.” “ I was just told I have Stage IV cancer.” “My family/friends treat me as though I am terminally ill.” Being told that you have cancer can easily be a challenge to your self-image and self-esteem. It might change the way you view yourself and your body. Sense of no control “I never expected anything like this to happen to someone like me.” “What can I do to make the tumors stop growing?” “There are so many appointments and scans and people telling me what to do.” “My insurance denied my medication.” Cancer, by definition, is cells that go out of control. Naturally, NET patients and their loved ones struggle with feelings of loss of control. Breaking down your stressor into its ingredient ( N.U.T.S .) can help you understand how it is affecting you. We can then move from a reactive position to a proactive position. The next step is creating a new marathon strategy. This is done by tricking the brain into thinking that the situation is not as stressful as it might feel. We reconstruct the stressor and reprogram our brains with new messages. In doing so, our bodies are re-trained to respond differently to stress. Marathon training isn’t reactive; it’s proactive. STRATEGY: RECONSTRUCT YOUR STRESS Examples of how to reconstruct (“trick”) your stress: Read previous LACNETS educational blog articles. (Education, Find a NET Specialist, Take control) Learn how to find reliable sources in What is Research Part 1. Dear Newly Diagnosed Part 1 and Rare Disease Day gives some basic facts about NET. Dear Newly Diagnosed Part 2 gives tips on how to become your advocate and lead your health team. It also discusses how to find a NET specialist. Watch the NET VITALS webinar and fill out your NET VITALS . (Education, Take control) Sign up for the LACNETS newsletter. (Education, Take control) Subscribe to the LACNETS YouTube channel . Watch videos of past meetings by clicking here (Education, Take control) Attend an upcoming LACNETS monthly educational meeting and save the date for the upcoming LACNETS annual patient education conference. (Education, Take control, Find support) Connect with another NET patient or caregiver through a local or online support group . (Education, Take control, Find support) In “NET marathon training,” deconstructing your stress is like analyzing and breaking down your specific gait. Reconstructing your stress is like retraining your gait in a healthier and more efficient way, one that protects your body and allows you to run much longer. You are reprogramming your body to respond to stress differently so that you can endure the long time and distance that you are under stress. You are conditioning your body by developing mental and physical strength to keep on running. As a result, you are developing resilience . Take a moment to pause and imagine what you might say to a friend who is running the LA Marathon. You would applaud their effort in training and completing the race. Running a marathon is hard . So, you deserve credit just for running the race. It’s not about how fast you run. It’s an achievement to simply be in a marathon. In the third and final part of this series, we will complete our marathon training by focusing on rest and recovery from stress. The opposite of stress isn’t relaxation. The opposite of stress is resilience. — Sonia Lupien, Ph.D. Director of the Center for studies on human stress and Associate editor of the Mammoth Magazine Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

Living with NET isn’t a sprint. It’s a marathon. Every March, thousands gather to run the Los Angeles (LA) Marathon . This annual event serves as a reminder that living with neuroendocrine tumor (NET) is often compared to running a marathon rather than a sprint. While it might be obvious, let’s first talk about what this metaphor means. Why is living with NET like running a marathon? 1. Time On the most basic level, when NET experts say this, it means that you’ve got time . In other words, contrasting a 100-meter sprint to a 26.2-mile marathon is like saying, “you have a lot more time .” This is meant as good news. Fortunately, this is a type of cancer most people can live with for years with proper care and treatment. 2. Pacing The two events demand entirely different pacing strategies. A sprint is a burst of speed and power. It requires quickly ramping up the heart, lungs, and muscles and using up oxygen in an all-out effort to move as fast as you possibly can. It simply isn’t meant to be sustainable. Continuing at this high-intensity pace inevitably leads to muscle fatigue and exhaustion. A marathon is an endurance run. It requires keeping a steady pace for a much longer duration. While the pace may be slower and less intense than that of a sprint, a marathon requires building significant physical and mental stamina in order to finish the race. A marathon isn’t about how fast you go. It takes great courage just to be in the race. In a marathon, there are times when it may be necessary to run a bit faster such as at the start and end of the race. Similarly, NET “sprints” might happen at the time of diagnosis, significant disease progression, or before/during/after surgery or other treatments. The important thing is recognizing whether or not there is a real threat. This is where educating yourself about NET and knowing your disease helps. Having a NET expert on your team is crucial. Your NET expert(s) can tell you when it’s time to sprint. For the most part, however, living with NET is like running a marathon. It is more about endurance than speed. Yet the tremendous stress experienced by those affected by NET often causes patients to sprint. Running a long distance at the pace of a sprint simply isn’t sustainable. It leads to burnout and exhaustion. If living with NET is like running a marathon, proper marathon training must include learning how to pace for an endurance run. This three-part series is our “NET marathon training.” In these articles, we focus on learning to deal with the stress brought on by cancer. It is based on the work of stress scientist Dr. Sonia Lupien from the University of Montreal , the keynote speaker at the NorCal CarciNET 2019 annual patient educational conference . Her presentation can be viewed here . More on Dr. Lupien and her stress research can be found on the website, Centre for Studies on Human Stress . THE SCIENCE OF STRESS: Dr. Sonia Lupien compares stress to running from a 4-6 ton prehistoric mammoth. Stress is the body’s physiological response to a perceived threat. It is how the body fights for survival, just like the prehistoric human kept himself alive by running from large mammoths (1). When the brain detects a threat, the part of the brain involved in emotional processing called the amygdala is activated. The brain tells the body, “there is DANGER!” The body reacts by activating the hypothalamic-pituitary-adrenal (HPA) axis and releasing stress hormones including adrenaline and cortisol (2). The stress response allows the body to respond quickly, run faster, gather more strength and courage, become more focused, plan quickly, and endure longer than we thought we ever could. Sound familiar? As you sit in the waiting room for a doctor’s appointment, a scan, or recent lab/imaging results, you sense your pulse racing, your breathing becoming shallow and rapid, and your palms getting sweaty. Though you’re not moving your body, the stress of living with NET makes you feel like you’re running a sprint. Now, stress itself is not a bad thing . It is the body’s natural response to danger. Even though mammoths no longer exist, our bodies still react as though they're sprinting away from one. The stress of living with NET triggers the body’s stress response and floods the body with stress hormones just as much as, if not more than, it does when running from a mammoth. Our bodies can’t tell the difference . This is because we interpret the situation as stressful. What this means is that there is hope . Just as we have evolved so that wooly mammoths are extinct and absolute stressors are rare, we can learn to influence our perception of stress and the way we react to it. We can (and will ) decrease our stress response and learn how to cope (3). The key to affecting the stress response is to change the body’s interpretation of the stressful situation. In the next article, Marathon Training Part 2, we will continue the marathon training with a discussion about reprogramming your stress response. Finally, there are two more important elements of the marathon we must also highlight: BREATHING: Breathing is foundational to marathon training. Your breath serves as a brake to your stress response by slowing and steadying your breathing and pulse. It also helps you tune into your body. It helps you know when you’re going at the right pace. Let your breath be your anchor. Allow your breath to circulate life-giving oxygen throughout your body and bring focus and calm to your mind and soul. THE FINISH LINE: While we may invest time and energy in educating ourselves, seeking second opinions, and making treatment decisions, it is also important to know why you are fighting and what you are living for. In other words, what are you are running to ? Running away from something is a survival instinct. Running to something is more sustainable and powerful. Marathon runners are not running away from the start line. They are running toward the finish line. All marathon runners need a finish line to run toward . What is your finish line? Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

In the previous blog, " Dear Newly Diagnosed NET Patient (Part 1): 7 Basic Facts about NET, ” you learned some basic facts about NET. One important thing you can do is to take control by becoming your own advocate and leading your health team. Here is a beginner’s guide to NET that provides helpful tips. 7 TIPS FOR THE NEWLY DIAGNOSED NET PATIENT: 1. GET ORGANIZED NET VITALS is a great place to start. NET VITALS is a downloadable document with the most important information that patients and healthcare professionals need to know about your neuroendocrine cancer. It is meant to serve as a patient-physician communication tool, a “NET passport,” with all the important information in one place that you can bring to all your doctor’s appointments. While it is not a medical document, it has been reviewed by NET specialists who agree that it would be helpful if patients fill out their own NET VITALS before their appointment. Note: NET VITALS is intended for informational and educational purposes only. LACNETS does not collect or store your NET VITALS. It is for your personal use only. How NET VITALS can help: Prepare for your appointment with your NET specialist. Educate yourself on your disease by understanding how this information relates to you. Get organized and compile the information and records for your upcoming appointment with your NET specialist. Clarify questions you have for your doctor(s). Help make your upcoming appointment more efficient. How to fill out NET VITALS: Download NET VITALS here. Watch the NET VITALS webinar . When you encounter unfamiliar terms and treatments, refer to the resources on the last page of the NET VITALS document. CNETS provides an excellent comprehensive patient guide that can be found here . Filling out NET VITALS can help identify the information that the NET specialist can help clarify. It helps you build a list of helpful questions to bring to your appointment. Bring the document with you to your doctor’s appointments. You will likely need to update it as the information changes. RECORD KEEPING TIPS (see NET VITALS for a list of important medical information): Many people choose a way to organize your information such as a 3-ring notebook or file folder. If you keep paper copies of labs, imaging reports, and pathology reports, consider scanning them to your computer. This not only makes your records easier to access, it also ensures that you don’t lose your only paper copy! Choosing an electronic system of record keeping on your computer or a cloud service can be helpful if you want to send information electronically, such as for second opinions. Some people track lab results on a spreadsheet to follow trends. Whatever you choose, organization is key! You want to know where everything is stored. Information should be easy for you to access and share with your medical team when asked. After every scan, go to medical records or the film library and ask for a CD of the scan images for your records. While you’re at it, request a second copy for your NET specialist or for second opinions. Never give away your only copy of any CD or document. After any biopsy or surgery, ask your doctor for the pathology report. (These are sometimes not found in your electronic patient portal, so you may need to ask for a copy.) After any surgeries or procedures, ask for the operative report or procedure report. (These are sometimes not found in your electronic patient portal, so you should ask for a copy.) 2. EDUCATE YOURSELF ON THE DISEASE: LEARN TO SPEAK “NET.” Watch this helpful introduction to NETS presentation by Dr. Pamela Kunz from Stanford University in Palo Alto, California. Check out NorCal CarciNET’s helpful resources for newly diagnosed : Checklist for the Newly Diagnosed Tips for Newly Diagnosed Video by Josh Mailman, president of NorCal CarciNET The National Comprehensive Cancer Network (NCCN) is an alliance of the leading cancer centers across the country that develops and publishes up-to-date, evidence-based practice guidelines called NCCN Guidelines . Because these NET guidelines are recognized as the standard in cancer care, it is an essential resource in discussions with your medical team. It is also an excellent reference when dealing with insurance claims. Order your free Neuroendocrine Cancer Guide for patients and families from Neuroendocrine Tumor Research Foundation (NETRF). Download or request The Healing NET Foundation Navigating the NET Patient Journey peer-to-peer publication for patients and caregivers. Canadian Neuroendocrine Tumor Society (CNETS) has a downloadable Reference Guide for Patients and Families. The Global NET Patient Information Pack by the International Neuroendocrine Cancer Alliance (INCA) is available for download in 10 languages. Connect with a NET educational/support group . Sign up for their newsletters to receive the latest updates on NET and upcoming meetings. Attend educational meetings and conferences to network with specialists and other patients. Subscribe to the LACNETS YouTube channel and watch videos of past educational meetings in the extensive LACNETS YouTube library . Note About Prognosis A common question we hear is, “How long do I have to live?” It is common for patients to report that their doctor told them that they had only months to live with the recommendation to “get their affairs in order.” In contrast, NET specialists will often say, “We don’t know how long you have.” The more you learn about NET, the more you will learn that prognosis is difficult to predict. NET is unpredictable, and each person’s case is unique, so it is typically difficult to predict a prognosis. Also, many of the statistics you might read are outdated. There has been a lot of recent advances in NET research which has led to earlier detection and more treatment options. As a result, patients are living longer with the disease. There are many in the NET community living with this disease for over a decade. 3. FIND SUPPORT Join a local support group and attend NET patient education meetings. We often hear people say, “I thought I was the only one with the disease.” Connecting with others can helps you feel less alone. See inspiring stories from other NET patients and caregivers. Click here . Connect with another patient to learn from their experience. Click here to connect with another NET patient or caregiver. Join a local NET support group. They are great resources for both support and education. Click here for a directory of NET support groups. Join an online support group. Click here and here for a directory of online support and discussion groups. TIP : Support groups are often a rich source of educational meeting and resources for patients and their families. People often learn much from the experiences of others. Some report finding their NET specialist(s) because of attending a support group. 4. FIND A NET SPECIALIST Studies (click here and here to read) show that NET patients who are seen by a multidisciplinary team tend to have better outcomes. Typically, NET centers are able to diagnose and treat NET faster and more accurately. It is best to have a multidisciplinary approach where a team of NET specialists with different areas of expertise get together and review your case. This often takes place at a tumor board where your case is discussed and reviewed by several doctors including medical oncologists, endocrinologists, gastroenterologists, surgeons, radiologists, nuclear medicine doctors, and pathologists. (Since patients are not allowed to be present, this video of a mock tumor board at a LACNETS conference can give you an idea of what one is like.) NET MEDICAL ONCOLOGISTS IN THE LOS ANGELES AREA: Dr. Randy Hecht UCLA (Santa Monica office), Medical Oncologist (GI) 2020 Santa Monica Blvd. Suite 600, Santa Monica, CA Phone: 310-829-05471 Dr. Andrew Hendifar Cedars-Sinai, Medical Oncologist 8700 Beverly Blvd, #LL North Tower, Los Angeles, CA 90048 Phone: 310-423-2217 Dr. Daneng (Dan) Li City of Hope, Medical Oncologist Co-director of the Neuroendocrine Tumor Program at City of Hope 1500 E. Duarte Road, Duarte CA 91010 (near Pasadena) Phone: 800-826-4673 To find a NET specialist outside of Los Angeles: NET Research Foundation’s Directory of NET Specialists is a good place to start. * TIP: Many of the NET specialists (including oncologists, surgeons, endocrinologists, etc.) have been speakers at past NET patient conferences and meetings. It may be helpful to search the YouTube or Vimeo channels of groups such as LACNETS , NorCal CarciNET , and NETRF for NET specialists that you may be considering for a second opinion. You might find it helpful to “see” the doctor before your appointment. 5. DECIDE WHO WILL BE YOUR QUARTERBACK Patients often see many doctors with different areas of expertise. Some patients get opinions from multiple NET experts. The important thing is finding someone who you feel listens to and addresses your concerns, explains things in a way you can understand, and provides the treatments you need. You want to find someone who you feel you can work with and who you feel is willing to work with you. Once you have gathered your medical team, decide who will lead your team and call the shots. 6. ATTEND A NET PATIENT EDUCATION CONFERENCE Support groups are a great source of information for NET patients. Some of them, including LACNETS and NorCal CarciNET, host annual patient and caregiver conferences. NET foundations such as Carcinoid Cancer Foundation , HealingNET , and NETRF are also involved in educational conferences. Sign up for their newsletters and visit their websites to find out about upcoming conferences. While some of these conferences can be viewed remotely via livestream and past conference videos are available online, it is worthwhile to attend the conferences in person as there are opportunities to interact with NET specialists, patients, and others in the community. LACNETS upcoming meetings Carcinoid Cancer Foundation HealingNET Foundation NCAN NETRF NorCal CarciNET 7. BREATHE Last but not least, don’t forget to breathe. Stop to reflect and remember the reason we try to educate ourselves is to LIVE better. For many of us, living with NET is more like running a marathon than a sprint. Some people feel a pressure to spend every waking minute learning about the disease so that they don’t miss something that could make the difference between life or death. For the majority of NET patients, that is simply not true. It is just as important to take care of our emotional, mental, and spiritual health as it is our physical health. If you’re feeling overwhelmed, it’s a good idea to take a break and do something that is life-giving and unrelated to cancer. Enjoy simple pleasures or activities such as being in nature, gardening, seeing a movie, going to a museum or attending a concert. When you feel rested and ready to resume your education, come back to learn more about NET. It’s amazing how restorative taking just one minute to breathe can be. (Click here to read a previous blog post “Breathe.”) Click to read Part I of this blog post series, “ Dear Newly Diagnosed NET Patient (Part 1): 7 Basic Facts about NET. " Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

You’ve just been told that you have neuroendocrine tumor, neuroendocrine cancer, or carcinoid. You may be feeling panic, disbelief, despair, or even a sense of relief to finally have a diagnosis. After those initial waves subside and you are thinking clearly again, the biggest question on your mind may be – “ now what? ” In this two-part blog series, we provide a beginner’s guide to NET that addresses some common questions and provides helpful tips. 7 BASIC FACTS ABOUT NET: Neuroendocrine Cancer is also known as neuroendocrine tumor. It is pronounced NOOR-oh-EN-doh-krin TOO-mer and often abbreviated as NET. Click here to hear the pronunciation. There are many terms or acronyms you may hear. Here are some of them: Neuroendocrine neoplasm (NEN ) is the official medical term often seen in medical literature such as the World Health Organization (WHO) classification of NEN. NEN includes both NET and Neuroendocrine Carcinoma (NEC). NEC is also referred to as “high-grade” neuroendocrine cancer. NEC is treated differently than NET. Most of the information covered by LACNETS refers to NET, which tends to be slow growing, compared to NEC which tends to be faster growing than NET. Carcinoid is an old term meaning “cancer-like” that is falling out of favor because it is not accurate. NET is not cancer-like ; it is cancer. Though some are benign, most are malignant. Neuroendocrine Cancer is often used to refer to NENs (NET or NEC) by patient advocacy organizations as it spreads awareness to the fact that NET is a type of cancer and not benign as previously thought. Other terms you might hear refer to the primary tumor site (e.g. PNET or pancreatic NET) or the hormone that the tumor secretes (e.g. insulinoma or VIPoma). NET is a rare cancer that affects about 6.98 in 100,000 people . NET affects neuroendocrine tumor cells throughout the body. These are hormone-producing cells, most commonly found in the gastrointestinal system (stomach, small intestine, large intestine, rectum), the lung, pancreas, or other parts of the body. It often spreads to the lymph nodes, liver, and bones. NET is a cancer that is difficult to diagnose. This is because not all people who have NET have symptoms. For those who do have symptoms (less than half of all NET patients), these symptoms are vague and include flushing, diarrhea, nausea, abdominal cramping, bloating/gas, and shortness of breath. Some (but not all) NET patients have symptoms from their cancer . Typically, only those patients who have hormone-producing tumors called functional tumors have symptoms. These symptoms are called carcinoid syndrome . You can learn more about carcinoid syndrome by clicking here . The cause is not known . People often wonder if they might have done something to cause their cancer. The answer is NO. Although there are a few types of NET that have a genetic link, most have no known cause. Seeking the opinion of a NET specialist is important for NET patients. When most people are first diagnosed with neuroendocrine cancer, it is usually not by a NET specialist. Most patients end up seeking a second opinion with a NET specialist, which sometimes means traveling outside of the area they live in. Because NET is rare, many doctors know little about the disease or about advances in diagnosis and treatment. A NET specialist can help guide your treatment plan. The NET specialist can work with your doctor to manage your symptoms, monitor your disease, and recommend treatments best suited for you. According to a large-scale survey of NET patients , those who receive their care at a NET specialist center feel significantly more satisfied with their treatment and more knowledgeable about treatment options than those who do not visit NET specialist centers. Check out the Dear Newly Diagnosed NET Patient (Part 2): 7 Tips for the Newly Diagnosed NET Patient where you will learn how to become your own advocate and lead your health team. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

WHAT DOES RESEARCH MEAN TO NET PROVIDERS? As a NET patient, you will hear the word “research” used a lot. This can cause confusion, because the word research has two different meanings. Patients often "research" their disease by scouring the internet and/or talking to other patients. (Click here to read “What is Research? Part 1 - What Does Research Mean to NET Patients? ”) On the other hand, when NET providers use the word “research,” chances are that they mean scientific research. Scientific research uses a rigorous objective, systematic method (aka the "scientific method") to collect data, observe, analyze, and find explanations for things. For scientific research to make a truth claim, it needs to have high validity and reliability factor. This means it must be objective, repeatable, reliable, verifiable, and testable in different situations and with different populations. WHAT IS CLINICAL RESEARCH? Clinical research (aka "clinical trials") evaluates what treatments and strategies work and don't work. It tests for safety, effectiveness, and what works best for a certain population (NET patients as a whole or specific type of NET patients, age of patient, etc.). Dr. Dan Li, medical oncologist and co-director of the neuroendocrine cancer program at City of Hope gives an excellent overview of clinical research terminology in this presentation , titled “Deciphering Clinical Trial Terminology: Patient Basics to Better Understand Neuroendocrine Tumor Research.” WHY IS CLINICAL RESEARCH IMPORTANT? Clinical research leads to future medical treatments that improve the health and well-being of NET patients. The work of clinical trials has led to strategies that are currently available including the Gallium68 Scan (NETSPOT), which has replaced the Octreotide scan, and Lutathera®, a form of Peptide Receptor Radionuclide Therapy (PRRT), a treatment which was approved by the FDA in January 2018. Dr. Pamela Kunz from Stanford gives an excellent summary of clinical trials in this presentation. Neuroendocrine Tumor Research Foundation (NETRF) funds research worldwide to discover cures and more effective treatments for neuroendocrine cancers. Click here to learn about both current and past research projects funded by NETRF. " Research Today is the Treatment of Tomorrow" is an excellent article written by patient activist and advocate, Ronny Allan, for Neuroendocrine Tumor Research Foundation (NETRF) explaining the importance of clinical research. ClinicalTrials.gov is a database of publicly and privately funded human clinical trials conducted around the world. Because the database is quite extensive, using specific search terms such as “neuroendocrine” yields thousands of results. To narrow the search further, search by status such as “recruiting” (which means the study is ongoing), eligibility such as age and gender, location (specify your country). You can also search by primary site of tumor (i.e. pancreas). WHAT IS EVIDENCE-BASED MEDICINE? You may also hear your cancer team say that they are practicing “evidence-based medicine.” Evidence-based practice is using the best research evidence to help make the best treatment decisions along with the patient’s values and preferences. Evidence-based medicine is the integration of three components: (1) Best (scientific) research evidence (2) Clinical expertise/expert opinion (clinical judgment and experience) to rapidly identify each patient's unique health state and diagnosis, their individual risks and benefits of potential interventions (3) Client values (and preferences) The bottom line is this: Research evidence alone isn’t enough to jump to a particular treatment. All three factors are important. The goal of evidence-based medicine is to provide the best clinical treatment tailored to the individual for their best outcome and quality of life. THE LACNETS MEETING ON FEBRUARY 12TH WILL FOCUS ON NET RESEARCH. We will be covering the following topics. Bring your questions with you! IMMUNOTHERAPY: Read this excellent update on immunotherapy by NETRF. PRECISION MEDICINE: Precision Medicine is defined here . This recent National Geographic article about precision medicine features Dr. Razelle Kurzrock, medical oncologist and Director of the Center for Personalized Cancer Therapy & Clinical Trials Office at University of California, San Diego. PRRT: Read this update on PRRT from July 2018. Here is a map of locations in the USA where Lu177 DotaTate (Lutathera) is administered as of October 15, 2018. In order to determine if a patient is a candidate for PRRT, it is essential to have a special type of PET scan with Gallium 68 (also called NETSPOT®) . The Gallium 68 PET/CT DOTATATE scan shows whether or not the tumor has somatostatin receptors . These are the same receptors to which Lutathera also binds. Since NETSPOT® was approved by the FDA on June 1st, 2016, it has replaced the Octreotide scan as it is more sensitive and takes less time to perform than the Octreotide scan. A Gallium68 scan is different from an MRI or CT scan: the Gallium68 scan is a type of functional imaging which shows the presence of specific receptors, while an MRI or CT scan is a type of structural imaging which measures tumor size. Here is information and locations of Gallium 68 PET/CT Scanning for Neuroendocrine Tumors (updated January 26, 2019). References: Masic I, Miokovic M, Muhamedagic B. Evidence based medicine - new approaches and challenges. Acta Inform Med . 2008;16(4):219-25. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3789163/ . Metz DC, Choi J, Strosberg, J, Heaney AP, Howden CW, Klimstra D, Yao JC. A rationale for multidisciplinary care in treating neuroendocrine tumours. Curr Opin Endocrinol Diabetes Obes . 2012 Aug; 19(4): 306–313. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/22760514 . Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

WHAT DOES RESEARCH MEAN TO NET PATIENTS? When looking for a place to eat, we turn to Yelp. Before purchasing an item, we might first read reviews on Amazon. The internet makes information readily accessible at our fingertips so that we can do our own research. This type of research is educational. When it comes to a health issue such as cancer, we often turn to the internet to learn more about our own disease in order to make the best possible decisions for ourselves. Knowledge is empowering. TO GOOGLE OR NOT TO GOOGLE? Searching Google for the following words yields literally over a million results: Cancer = 1,280,000,000 results Neuroendocrine Cancer = 7,160,000 results Neuroendocrine Tumor = 6,440,000 results Carcinoid = 2,680,000 results There’s so much information on the internet that it can easily feel overwhelming. On the one hand, you might come across discouraging statistics. On the other hand, there are many online virtual health communities such as Inspire.com, ACOR, and Facebook groups that provide much needed emotional and psychosocial support. They can be great opportunities to connect with other patients and learn from their experiences, but these online support groups may not be the best sources of health information. You should always discuss any information with your medical team to see how it relates to you. HOW TO EVALUATE SOURCES: As you browse the internet, here are things you should look for when you encounter a new or unfamiliar source: Accuracy: Does it use reliable research? What are the sources? Authority: Look for sites with expertise in NET. Look for sites from established institutions or foundations. How many NET experts are involved in the source? Do those NET experts agree or disagree? If you can, ask a NET expert about the information you read. Beware of Bias : Information should be balanced and give the pros and cons of any proposed treatment. Consider the purpose and mission of the website, who is writing the article, where the article is published, and any sponsors or sources of bias. Typically, medical journals, medical institutions, medical organizations, and foundations follow strict guidelines to minimize bias. This is why authors and speakers state any potential conflicts of interest at the beginning of a book or presentation. Be skeptical of sites trying to sell you something, especially if they are offering a “miracle cure.” Sadly, cancer patients are vulnerable and often the target of scams. The Federal Trade Commission (the government agency that identifies and tracks scammers) has an excellent article on how to spot a cancer scam. Current: Check the date to see how recent the information is. The world of NET diagnosis and treatment is changing rapidly, so information from a few years ago may be outdated. Weigh Opinion/Personal Experience vs Information: While personal blogs and anecdotes are helpful, they may or may not relate to your situation. Comparing individual cases to clinical trial data can be as different as comparing two different types of food groups. What research is backing up the information? WHAT ARE RELIABLE SOURCES? Here are sources we believe to be reliable: NET SPECIFIC RESOURCES: LACNETS Resources NET VITALS Carcinoid Cancer Foundation , the oldest NET nonprofit organization in the United States is a wealth of information. Healing NET Foundation aims to optimize the care of those with neuroendocrine cancer through the education of and collaboration among physicians, health care providers, patients, and caregivers. North American Neuroendocrine Tumor Society (NANETS) is dedicated to educating medical professionals on the diagnosis and treatment of NET disease and supporting research and innovation in the field. NANETS develops and publishes consensus guidelines on the management of treatment of NET. Neuroendocrine Tumor Research Foundation (NETRF ) funds research to discover cures and more effective treatments for neuroendocrine cancers. NETRF also offers patient educational resources . NorCal CarciNET is one of the largest patient support group. Their website, Facebook group, video library, and newsletters often features the most up-to-date information about NET including live interviews with NET specialists from around the globe. GENERAL CANCER RESOURCES: Cancer.Net is a resource from the American Society of Clinical Oncology with oncologist-approved cancer information. ClinicalTrials.gov is a database of publicly and privately funded human clinical trials conducted around the world. National Cancer Institute (NCI) is part of the National Institutes of Health, which is the U.S. government organization that funds cancer research and training. Their website provides a host of information on various cancer types and cancer-related issues. National Comprehensive Cancer Network (NCCN) is an alliance of the leading cancer centers across the country that develops and publishes up-to-date, evidence-based practice guidelines called NCCN Guidelines. These patient guides serve as an excellent resource in discussions with your medical team and in guiding treatment decisions. The NCCN guidelines for NET is endorsed by the Carcinoid Cancer Foundation, the Healing NET Foundation, NCAN, and NETRF. PubMed is a database of biomedical literature maintained by the U.S. National Library of Medicine and the National Institutes of Health. This is a very extensive database that requires narrowing the search with specific keywords. More reliable Cancer Information Sources can be found here .  Stay tuned for the upcoming blog post, “ What is Research? (Part II): What Does Research Mean to NET Providers? ” References: Research your cancer online: dive in or steer clear? Using Trusted Resources, American Society of Clinical Oncology (ASCO) Cancer Information on the Internet, ASCO Evaluating Cancer Information on the Internet, ASCO Reliable Health Information on the Internet, Johns Hopkins Bayview Medical Center Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

The holidays and cancer sound like two words that simply don’t go together. The holiday season can bring up so many emotions. Fatigue …Simply the thought of decorating the house, shopping, and wrapping presents is exhausting. Interactions with others …What will I tell distant relatives who are seeing me for the first time since my diagnosis? How will they react? How do I keep my loved ones from worrying about me during this celebratory season? How many well-meaning people will tell me about a miracle cancer cure? How many times will I hear, “But you look so good…”? Worry …How will I explain to my kids that the holidays will be different this year? What can I eat and drink? What will life look like next year? Stress …In the past, holidays used to be a certain way. I feel like I should be able to carry on these traditions. How do I manage all that needs to get done? How can I celebrate when I’ve experienced so much loss? It may be easy to feel like saying, “Bah humbug!” How not to allow Cancer to be a Scrooge: Let go of expectations of yourself. Release yourself from the expectations of how things “should be” or “used to be.” Find creative alternatives to holiday traditions. Take yourself off the hook from the need to do everything yourself. Ask for help and delegate responsibilities. Acknowledge and accept feelings of sadness. Allow yourself the time and space to feel sad. Give yourself permission to talk about your feelings with people that you feel safe with, whether it is a significant other, family member, support group, or professional. More resources on managing depression and other emotions are listed below. Slow down and keep things simple. Learn to say “no.” Plan your time and energy wisely to avoid overdoing it. Break down tasks into manageable chunks. Pace yourself. Build in moments to simply take a breath. Plan ahead. Holiday grocery shopping can be chaotic and tiring. Here are practical tips on how to make holiday grocery shopping easier . Be prepared for interactions. Prepare a script. Consider your responses to potential questions and situations. Plan an exit strategy. Prepare an escape plan for uncomfortable interactions or for times when you feel fatigued. Be intentional in your self-care. Eat balanced, healthy meals. Eat and drink in moderation. For more on nutrition, see below. Physical activity can help release tension and reduce anxiety, depression, and stress. Protect yourself and your loved ones from the flu and other illnesses by taking proper precautions: Get the flu shot, washing your hands, and limit contact with those who may be ill. If you are bringing food to a holiday gathering, prepare by reading these tips on how to prevent food-borne illnesses . If you plan to send food gifts, follow proper these food safety guidelines . Schedule in "me" Time Allow yourself simple pleasures (light a candle, nap, walk) or activities (going to a movie, dinner, or sporting event) that provide a distraction and may help lift your mood. Laugh with NET patient and comedian Steve Mazan . Listen to inspirational music by NET patients Giovanna Imbesi or Tom Bajoras . Find support. Ask for help and allow yourself to receive it. Join LACNETS. Join a local support group. Click here for a directory of NET support groups. Connect with others online. Click here for a directory of online support and discussion groups. Resources Coping with Loss During the Holidays, NET Research Foundation (NETRF) Nutrition Information for NET patients: In this article , NETRF provides excellent information about what to eat and what to avoid, resources for recipes, and meal preparation. NET Dietician Meghan Laszlo, MS, RD, CSO of Cedars-Sinai Medical Center answers the top 10 NET nutrition questions in this podcast episode, covering topics including carcinoid syndrome, prescription enzymes, diarrhea, and recommended diet. Nutritionist Leigh Anne Burns shares helpful nutrition tips specific for NET patients: Watch this video of Leigh Anne Burns from the LACNETS 2017 Patient Education Conference. Read these HealingNET blog posts written by Leigh Anne Burns: Blog Post #1 Blog Post #2 Blog Post #3 Here are more videos on nutrition for NET patients: Nutrition & Integrative Oncology presentation by Carolyn Katzin from the 2016 Los Angeles NET Patient Education Conference NET Nutrition presentation by Meghan Stewart (Laszlo) from the LACNETS 2015 Los Angeles Patient Education Conference Neuroendocrine Cancer Cooking Class with Michael Sieverts Carcinoid Cancer Foundation Nutrition Video Resources for Depression Feeling blue? Read this article about cancer and depression by NETRF and consider taking this anonymous online self-assessment . Depression hotlines are available if you are experiencing depression or if you have a friend or loved one who may be depressed. The American Cancer Society is also available 24 hours a day, 7 days a week and can help you find support online, local bereavement groups, and other resources. Call 1-800-227-2345 Resources for Grief and Loss Click here for the LACNETS Grief and Loss Resources Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS