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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

- Written by Lisa Yen, NP, NBC-HWC Zebras on my mind… Lately, I’ve been thinking a lot about zebras. The zebra has become the international symbol for neuroendocrine cancer (NET) with patients often wearing zebra outfits and paraphernalia. The reason for this is because physicians are told during their training, “When you hear hoof beats, think horses, not zebras.” In other words, doctors are taught to focus on the more common diagnoses instead of the rare causes. Think zebra has become the mantra of the NET community . Not only is the zebra a representation of the rare disease status of NET, the fact that each zebra has a unique pattern of stripes also speaks to the uniqueness of each NET patient’s disease and journey. One zebra is beautiful...A herd of zebras is a sight to behold. If you’ve ever seen a zebra, you know that the true magic of their stripes happens when zebras gather in a large group. In a herd, the pattern of each zebra’s stripes blends with those of the surrounding zebras. Predators such as lions see a large, moving, striped mass rather than individual zebras. This confuses the lion and as a result, it keeps the zebras safe from the herd. Zebras do better in a herd! WHAT IS NET CANCER DAY? NET CANCER DAY is an annual international event dedicated to raising awareness of neuroendocrine tumor (NET). NET CANCER DAY is a day for YOU. If you or your loved one are affected by NET cancer, it is a day to bring information and hope to you. It is a day for your voice to be heard by raising awareness to this rare disease. The ultimate goal is to improve diagnosis and care of those living with NET. Read more about why a Worldwide NET Cancer Awareness Day affects you here . WHAT IS THE LACNETS NET CANCER DAY SYMPOSIUM? Our goal for the 2018 NET Cancer Day is to provide information about supportive services for NET program . WHAT CAN I DO TO RAISE AWARENESS OF NET CANCER? Talk: Share your story with friends, family, acquaintances, healthcare providers, and on social media. Walk: Come to the LACNETS Symposium on November 10th. Give: Fundraise, Volunteer, Donate. Hope! Always hold onto hope! Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

"Before we all started carrying cell phones or GPS units, cairns provided a timeless means of communication. They say: ‘You are here. You are not alone!’” — David B. Williams; Cairns: Messengers in Stone On a recent trip to Iceland, I was fascinated by the sight of ancient cairns. These were not simply piles of delicately balanced rocks left by tourists at breathtaking viewpoints. Instead, these cairns were impressive pyramid structures looming taller than an average human. They had served as trail markers for hundreds of years before the invention of cars and GPS units. I closed my eyes and imagined what it must have been like to journey through the rugged terrain of Iceland with these cairns as my guide… Imagine being lost and alone, unable to find your way on the dark, uncertain path. The skies are gloomy and overcast, and the unrelenting wind chills you to the bone. There are no signs of life around you. You waiver between tears and a state of panic. You want to give up. Suddenly, out of nowhere, you catch a glimpse of something off in the distance…a pile of rocks in a recognizable shape. You instantly know it is a cairn. It is so simple and rugged, formed of rocks of various sizes to balance into a sturdy pyramid. With each step closer to this pile of rocks, you can finally breathe again. You hadn’t even noticed you were holding your breath. A huge wave of relief washes over you. Somehow, by seeing that pile of rocks, you know you’re going to be okay. Not only do the rocks mark the way, they tell you that you’re not alone and that others have traveled on the same path. You suddenly feel a little less alone, a little less scared. It sparks a bit of hope somewhere deep inside. You muster up the courage to continue on the journey with a lightness in your step…and in your heart. There is something calming and at times, moving, about the sight of a cairn. Perhaps our emotional response is because of the cairn’s meaning. It is more than a pile of rocks marking the trail. The cairn carries significant messages. Geologist David B. Williams writes in his book Cairns: Messengers in Stone how cairns convey three messages: “The first is communication, for cairns are arguably one of humanity’s earliest ways of sharing information. The second is connection, in that people often build a cairn or add a stone to one as a means of connecting to place, history, and/or family. And, finally, cairns are a sign of community, of travelers, of hikers, of explorers; each time we build one or rely on one we are bonding with those who came before and will come later.” — David B. Williams, Geologist Cairns are a timeless means of communication crossing many barriers. The experience that travelers have when they see a cairn is what I hope for those who are on the journey of living with neuroendocrine tumor (NET). With all its unexpected twists and turns, those of us navigating this journey can feel lost and anxious, as past explorers did in Iceland. Because the stress and anxiety of uncertainty may feel overwhelming, we yearn for a cairn to help guide the way. The good news is there is a cairn along your journey. A health and wellness coach (or simply “health coach”) can serve as a guide, or a cairn, on your journey. By partnering with a health coach, you experience the powerful message that you are not alone. Connecting with a coach and with a deeper community of past, current, and future fellow travelers through groups such as LACNETS cultivates and inspires resilience. These experiences positively influence the traveler’s narrative to create one of resilience. To this end, I am excited to announce that LACNETS is offering one-on-one telephonic coaching sessions to NET patients and caregivers who are motivated to invest in their own self-care. Health coaching is an opportunity for individuals to invest time and energy in self-care by going through a personal journey of change with a health coach as a guide. To be clear, coaching isnot about seeking or receiving medical advice, nor is it therapy . The role of the health coach is not to give advice, prescribe a plan, or tell the client what to do. Health coaching is not about obtaining information about NET. (For NET-specific information, visit our resources page. ) Instead, health coaching is a personal journey of making positive behavioral change toward self-care with a coach as a guide . Just as a cairn does not affect the external conditions such as the weather nor the length of the journey, health coaching is not intended to specifically address the medical aspects of the NET journey. The focus is not on disease management or treatment but rather, the focus is on improving one’s quality of life . The coach guides the client in defining and clarifying his/her own health and wellness goals and helps the client move toward those goals in an incremental, manageable way. “Adding life to years is as important as adding years to life.” — Ronny Allan, NET Patient & Patient Advocate While the NET journey may be unpredictable with factors outside of the patient’s control, the client can choose to work on lifestyle choices within one’s control that may include nutrition, movement, sleep/rest, mind-body connection, spirituality, environment, or relationships, just to name a few. Through this process, the client gains the knowledge, skills, and confidence to make lasting and positive behavioral changes. Doing so fosters hope, clarity, and gratitude. With the guidance of a “cairn,” the client develops a new narrative of resilience so that the client can persevere in his/her journey with NET. You are not alone. There is hope. There is a cairn along your journey. For more information on Health Coaching, click here. If you would like to sign up, please fill out this form here . *Note: This program is currently available for U.S. residents only. Limited spaces are available. Applicants will be taken on a first-come basis. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

LACNETS Patient Education Seminar Andrew Hendifar, MD, Oncology, Cedars-Sinai Meeting Date: October 9th, 2018 Location: Cedars-Sinai Medical Center Q&A with Dr. Andrew Hendifar 1. I HAVE HEARD IT IS ADVISED NOT TO TAKE A HOT BATH FOR 24 HOURS AFTER A SANDOSTATIN INJECTION. WHAT DO YOU THINK? Dr. H : I am not aware of any issue with taking a bath. 2. IS HIGH BLOOD PRESSURE (HYPERTENSION) A SIDE EFFECT OF SSA? Dr. H : Typically, no. It is not something we see often with SSA. It is usually related to the disease, carcinoid syndrome or other things going on in life. 3. DOES SSA INTERACT WITH OTHER MEDICATIONS? Dr. H : Nothing comes to mind. 4. HOW FAST DOES SANDOSTATIN GET INTO THE SYSTEM? Dr. H : I’m not sure it really matters. Both work for symptom control and to control tumor progression. Looking at how the drugs work (pharmacodynamics or pharmacokinetics) not something we really need to worry about. 5. WHAT HAPPENS IF A DOSE IS MISSED OR SKIPPED? Dr. H : Forgetting a dose for a few weeks is typically okay. We don’t encourage it but it’s probably okay. For those with carcinoid syndrome, this is more of a concern. 6. WHAT ABOUT RUBBING THE INJECTION SITE? Dr. H: I wouldn’t worry too much about it. There are some little intricacies to the injection and even if it doesn’t go perfectly, I wouldn’t worry too much about it. Note about memory: One thing we do worry about is memory. I’m convinced that the tumor may have some effect on that. Also, memory may be affected by aging. If memory is becoming an issue, address it. There is neuro-psych testing that can evaluate if there are other things affecting memory that can be addressed. 7. I HAD AN EXPERIENCE WITH AN INJECTION GIVEN VERY QUICKLY WHICH RESULTED IN A LOT OF PAIN FOR 24 HOURS. Dr. H: Giving any shot slowly (into the muscle) helps. Sandostatin is a large volume of medication injected in the muscle so pushing this into muscle is uncomfortable. Giving it slowly can help. Walking is often the best thing you can do for discomfort after sandostatin. 8. IF YOU HAVE PROGRESSIVE DISEASE, WOULD YOU SWITCH TO ANOTHER SSA? Dr. H: There is no research to suggest that switching SSA would help. 9. HOW LONG SHOULD THE MEDICATION BE GIVEN OVER? Dr. H: Lanreotide is injected over 20 seconds. 10. IF THE MEDICATION IS NOT GIVEN PROPERLY, DOES IT AFFECT THE EFFECTIVENESS OF THE MEDICATION? Dr. H: Typically, the biggest issue is pain and not the effectiveness. If there is a concern, you should discuss this with your physician. 11. WHAT ABOUT CHECKING THE LEVELS OF THE SSA TO SEE IF WE ARE AT THE OPTIMAL LEVELS IN OUR BLOOD? Dr. H: I would not encourage it. In the past, these were the only therapies available. It used to be standard practice 20-30 years ago to check levels and adjust the medication accordingly. Now, most of the formulations work very well. Checking levels is typically not practical nor helpful. Also, checking levels requires correct timing and careful laboratory testing. It introduces a lot of uncertainty. Nowadays, there are many other therapies and it may not be worth our time and effort to check levels to guide management. 12. I HAD AN EXPERIENCE WHERE THE MEDICATION WOULDN’T GO IN AND THE NURSE HAD TO GIVE THE INJECTION ON THE OTHER SIDE. IS THAT OKAY? Dr. H: Unfortunately, that happens sometimes from the medication thickening. It is okay…nothing was wrong with the medication. Getting the medication on the same side two months in a row is okay. Switching injection sites is mostly for comfort. 13. WHAT IS THE MAIN SIDE EFFECT FROM THE SHOT? Dr. H : The biggest side effect is that the medication causes the pancreas to produce not enough enzymes to digest your food. This is “EPI” == Exocrine pancreatic insufficiency. Your fat digestion isn’t as good as it should be and your diarrhea changes to a light color. It can be oily and it might float. The symptoms can worsen with certain things you eat. You can take pancreatic enzymes (pancrelipase). There are 3 different types that need a doctor’s prescription: creon, pertzye, zenpep. They all work. Unfortunately, the co-pays can be quite high. The enzymes are porcine. When you get them over-the-counter, it is hard to say. 14. IF YOU DON’T HAVE DIARRHEA, SHOULD YOU STILL TAKE THE ENZYMES? Dr. H: No. Even if you have diarrhea, if it’s a little bit, you don’t necessarily need to take it. The biggest issue is a misunderstanding of what is going on. Patients often think that they don’t have carcinoid syndrome and then once they start getting the shot, they have carcinoid syndrome. This isn’t necessarily the case. It is often an issue with understanding what is happening, that diarrhea doesn’t mean you now have carcinoid syndrome but that there is fat malabsorption or EPI. Once you have a correct understanding of what is going on, you can work with it and go from there. 15. WHAT CAN BE USED OTHER THAN SSA? WHAT ABOUT IMMUNOTHERAPY? Dr. H : Start first with SSA, if you are a candidate for it. If you have poorly differentiated NET, you are typically not on SSA. If you have well- differentiated, SSA is an option. It depends on what location the tumor is coming from: If you have pancreatic, lung, or everywhere else, everolimus is an option. If you have the same receptors that light up on the Gallium 68 scan (somatostatin receptors), PRRT is an option. This delivers radiation to the tumor by attaching it to a radionuclide. Immunotherapy is still under research and it depends on tumor type and location. We don’t know yet if it will work and for which patients it will work for. If you have poorly differentiated or high grade, immunotherapy seems to have a more role. If you have a high grade lung NET, immunotherapy is approved. There are many more studies that will be happening with immunotherapy in combination with other treatments. You want to start with treatments that are known to work before trying treatments that are not yet known to work. 16. WHAT ABOUT TAKING PROBIOTICS? Dr. H: Probiotics can be helpful with diarrhea since factors such as being in the hospital, stress, and antibiotics can affect the gut flora. I recommend you get it from yogurt ( no added sugar ), meaning natural sources. Taking supplements is okay too. 17. WHAT CAN THE PATIENTS DO IF THERE ARE ISSUES WITH THE SHOT? Dr. H: Give feedback to your physician about any issues you might have and if needed, ask for more training to be provided to the nurses. The medication comes with instructions. Both pharmaceuticals have available resources and can come into the office to give training. 18. IF YOU’VE TRIED CREON (AND ON THE RIGHT DOSE & RIGHT TIMING) AND STILL HAVE DIARRHEA FROM THE SSA, CAN YOU TAKE IMODIUM? Dr. H: Yes, if you take imodium short-term. Make sure you’re on the right dose of pancreatic enzymes as it is often underdosed. The appropriate dose of pancreatic enzymes is 1,000 units per kilo per meal so for a normal person, this is 70,000 units per meal. Make sure you’re taking pancreatic enzymes at the right time which is right before the meal and also before snacks. If you are eating over a long time (i.e. long meal), you might have to take some more enzymes. 19. CAN INCREASED NIGHTTIME URINARY FREQUENCY BE RELATED TO SSA? Dr. H: It is typically not related to SSA. It might be related to high blood sugars. It might be related to prostate issues; you might need to talk to a urologist. 20. SOME PEOPLE MENTIONED FATIGUE AS A SIDE EFFECT, HAVE YOU EXPERIENCED THAT? Dr. H: I’ve had patients report fatigue. However, it’s hard to say what the fatigue is from. Fatigue is a commonly report side effect of any cancer. 21. IS DIARRHEA FROM CARCINOID SYNDROME OR FROM EPI (EXOCRINE PANCREATIC INSUFFICIENCY)? Dr. H: If you didn’t have diarrhea (and stomach pain from bloating/gas) before starting SSA and then after starting, you have diarrhea (and stomach pain from bloating/gas), you do not have carcinoid syndrome. This is from EPI, exocrine pancreatic insufficiency of fat malabsorption. The most important thing is that you don’t stop the therapy. There is a good solution: pancreatic enzymes. EPI can cause gas, bloating, stomach pain, and diarrhea that happens after you eat and is worse with eating fatty foods. 22. SHOULD I BE ON OCTREOTIDE DURING SURGERY? Dr. H: If you do not have carcinoid syndrome, you don’t need to be on octreotide during surgery. If you have carcinoid syndrome, you should be on octreotide during surgery. You should tell the anesthesiologist. It is important that your medical team is aware and prepared. RESOURCES: Santa Monica pharmacy offers a wide selection of digestive enzymes and Creon alternatives. Speak with Pam. Click here to learn more . For more resources including additional information, financial assistance, a symptom tracking app, please visit the LACNETS resources page here .

UPDATE: Did you know that NET patients can arrange to get their monthly shot at home? Ipsen (the manufacturer for lanreotide) and Novartis (the manufacturer for sandostatin LAR) offer a home health administration program. (Medicare and other government programs may be excluded.) Ipsen offers a home injection program for lanreotide, through its IPSEN CARES® program at (866) 435-5677. Novartis offers a mobile administration program for long-acting octreotide through its Patient Assistance Now Oncology (PANO) program at 1-800-282-7630. It’s that time of the month again… You receive your usual reminder for your monthly shot. Today is the day. You jump into your car and fight typical LA traffic to get to your oncologist’s office. You rush to check in on time and then wait the required 30 minutes for the medication to come to room temperature. After being escorted into the office, a blood pressure cuff squeezes your arm while you hold an ET-like probe on your forefinger and a thermometer probe under your tongue at the same time. You laugh at yourself as you awkwardly try to balance all the instruments for a minute or two. You are weighed, measured, and ushered into a sterile-appearing exam room. You wonder who will give you your shot today. Your anxiety and stress level have been rising steadily for over an hour, peaking just when an unfamiliar face enters the room with a familiar syringe in hand. Your heart sinks. As you leave the office, you might feel a bit sore. Or, you might be floating with joy as you pass other cancer patients in the waiting and treatment areas, grateful for the ease and simplicity of your experience. You just received your once-a-month shot to treat your neuroendocrine tumor, yet you don’t feel like a cancer patient. Why is there such a range of patient experiences with the shot? What can be done to make my experience with the shot better? Maybe you haven’t experienced physical discomfort with “the shot.” Maybe they don’t bother you at all. Or maybe, after a few weeks, your medical bill arrives, and you are shocked. You start calculating the amount of debt you’ll accumulate over months and years. How can I get some help to pay for these shots? Artwork by Nancy Marsden A few months later, you’re due for your regular scan. You are bewildered when you see in your report “hypointense lesions within the subcutaneous fat within the lower abdominal wall” or “new nonspecific lesions within the subcutaneous fat” or “nonspecific nodules within the gluteal fat” or “granulomas within the subcutaneous fat.” Fear and anxiety begin bubbling up inside as you wonder if these findings are new tumors or if it means that you did not receive all of the medication from your monthly shot. While these experiences may not be universal, they are common. The patient’s experience of somatostatin analogs (SSAs) continues to be one of the most common concerns regularly voiced at patient support group and education meetings. Here are some common questions: WHAT ARE SOMATOSTATIN ANALOGS (SSA’s)? Somatostatin is a hormone that is naturally produced in many parts of the body. Somatostatin analogs (lanreotide and octreotide) are synthetic versions of somatostatin that mimic its action. SSAs are considered the “first line therapy” for NET, meaning that that it is typically the initial treatment that NET patients receive. Somatostatin analogs (octreotide/lanreotide/vapreotide) are now available in the US and other countries in three forms: octreotide - (trade name) – Sandostatin s.c.®, and Sandostatin LAR® (given every 3-4 weeks) manufactured by Novartis lanreotide – (trade name) – Somatuline®, manufactured by Ipsen HOW DOES “THE SHOT” HELP ME? Artwork by Nancy Marsden There are two benefits of taking a SSA : Symptom control of “carcinoid syndrome”: SSAs work by blocking the overproduction of hormones by the tumor cells that cause unpleasant symptoms such as flushing, diarrhea, and wheezing that affect the quality of life of NET patients. This may mean receiving a injection once a month. Some patients may also self inject a short-acting form of octreotide (known as a “rescue injection”) which can be given one to four times a day to help control symptoms that persist despite the monthly shots. Tumor control: Long acting SSAs are the mainstay of NET treatment as they have been shown to slow down or even reverse the rate of tumor growth. This is supported by research from the CLARINET (lanreotide) and PROMID (octreotide) studies showing that these long acting SSAs can stop the growth of NET cells, resulting in slowing tumor progression. WHAT CAN I DO TO MAKE “THE SHOT” LESS PHYSICALLY, EMOTIONALLY, OR FINANCIALLY STRESSFUL? 1. Educate yourself. Attend the upcoming LACNETS meeting. To register, click here . Here are some useful resources: Excellent summary of SSAs (Somatostatin Analog Therapies) Patient advocate blog post (with videos) Technical article about management of midgut NET Somatuline Depot (lanreotide) info & resources Sandostatin LAR Depot (octreotide) patient resources Sandostatin LAR Depot (octreotide) Carcinoid Syndrome Sandostatin LAR Depot (octreotide) Facebook Page 2. Keep a record. Journal about your experience, side effects, symptoms. Journal about your carcinoid symptoms in the period in between shots. Keep a record of injection sites so YOU know and can inform the nurse when you arrive for the next appointment. Click here for a useful app for record keeping. 3. Communicate. Talk to your physician. Share your experience with your medical team. Communicate with the medical professional(s) who are administering your injection. Let them know what has and has not worked for you. Ask questions. Talk to the patient navigator. 4. Get Help. Ask a friend to go with you to appointments. Talk to a representative or nurse from the manufacturer Novartis or Ipsen to ask your questions, voice your concerns, and provide feedback about your experiences. They may be able to send a nurse educator to educate the staff where you receive your injections. Talk to your physician. Talk to the patient navigator. Try relaxation techniques such as mindfulness, meditation, or progressive muscle relaxation. For financial assistance, enroll in the patient co-pay assistance program through the drug manufacturers: For Somatuline Depot (lanreotide) www.ipsencares.com OR CALL (866) 435-5677 For Sandostatin LAR Depot (octreotide) https://www.hcp.novartis.com/products/sandostatin-lar-depot/carcinoid-syndrome/access/ or call 1-800-277-2254 WHAT QUESTIONS DO YOU HAVE ABOUT SSA’s? Octreotide or Lanreotide? Which one should I be taking? How often should I be taking it? How often can I take it? What if I have symptoms in between my shots? Should I stop taking SSAs while I’m undergoing medical procedures (PRRT, surgery, chemotherapy, etc.)? Will SSAs interfere with the accuracy of my Gallium-68 scan? What are some of the possible side effects from SSAs? What if I miss a shot? What if I have to skip a month (for example traveling or sick)? Learn from other patients at the next LACNETS Virtual Support Group meeting. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

“Say a little prayer for the family of Aretha Franklin…and also those fighting this disease." By now, you’ve probably heard the tragic news that soul legend Aretha Franklin passed away at 9:50am on Thursday, August 16th from "advanced pancreatic cancer of the neuroendocrine type," which was confirmed by Franklin’s oncologist, Dr. Philip Phillips of Karmanos Cancer Institute in Detroit. Though this 18-time Grammy Award-Winning singer and songwriter known for hits such as “Respect,” “Natural Woman,” and “Say a Little Prayer” battled health issues for years, she chose to guard her privacy rather than reveal any details. People knew that she underwent surgery in December 2010 , after which she claimed “ the problem has been resolved ." Arethra Franklin’s death comes only three days after reports that she was " seriously ill .” This loss is felt by all. Until now, perhaps the most famous celebrity to die of neuroendocrine cancer (aka neuroendocrine tumor or NET) was Steve Jobs. In March of this year, Bollywood actor Irrfan Khan, known widely for his roles in Slumdog Millionaire and Life of Pi , revealed that he had been diagnosed with neuroendocrine tumor (NET). While there has been a rise in the attention given to NET following the death of Steve Jobs, there continues to be much public misunderstanding. Today’s news was a good example of this. News reports of Aretha Franklin’s death are making the common mistake of confusing pancreatic adenocarcinoma with pancreatic neuroendocrine tumor. To help clear up some of this confusion, here are some FAQs: IS NEUROENDOCRINE TUMOR OF THE PANCREAS A “RARE FORM OF PANCREATIC CANCER?” NO! It is in fact not a “pancreatic cancer”. It is a distinct cancer that behaves differently and originates in different cells within the pancreas. Its prognosis and treatment are completely different. Neuroendocrine tumors are a perfect example of why it is important to move away from the the traditional way of identifying cancers by the organ where they originate. Instead, it is more accurate to identify the cancer by the type of cells. Correct classification leads not only to proper treatment as well as realistic expectations by patients and their loved ones. While Neuroendocrine cancers may originate in cells within the pancreas, they also can arise in other hormone-producing cells elsewhere in the body. They are found most commonly in the lung or gastrointestinal system but can originate in other hormone-producing cells. Neuroendocrine cancers are sometime also called carcinoid , GEP-NET (gastroenteropancreatic NET), and pancreatic NET (islet cell tumor, gastrinoma, glucagonoma, and insulinoma). (Source: www.carcinoid.org/2011/08/26/pancreatic-neuroendocrine-tumors-a-rare-cancer/ ) WHAT IS THE DIFFERENCE BETWEEN NEUROENDOCRINE CANCER AND “PANCREATIC CANCER”? Aretha Franklin did not have pancreatic cancer. She died of advanced neuroendocrine cancer that originated in the pancreas. What is Pancreatic Cancer? Pancreatic adenocarcinoma is a cancer of the exocrine pancreas and is often referred to as “pancreatic cancer” or “pancreatic adenocarcinoma.” These comprise approximately 95% of all cancers that originate in the pancreas. What is Pancreatic Neuroendocrine Cancer? Pancreatic neuroendocrine tumors (PNET) is a cancer that originates in the endocrine cells of the pancreas. Tumors that originate in the endocrine cells are referred to as “pancreatic neuroendocrine tumors” or “pancreatic islet cell tumors.” PNET make up approximately 3-5% of cancers that originate within the pancreas. As stated above, neuroendocrine cancers affect cells throughout the body that secrete hormones most commonly in the gastrointestinal system (stomach, small intestine, large intestine, rectum), the lung, pancreas, or other parts of the body. It commonly spreads to the liver, lymph nodes, and the bones. (Source: https://netrf.org/pancreatic-neuroendocrine-cancer-vs-pancreatic-cancer/ ) IS NET CURABLE? Unfortunately, no. While early detection and intervention improve overall survival, there is no cure. Therefore, proper surveillance with appropriate labs and imaging as well as follow-up with a NET specialist is important. WHY DOES THIS DISTINCTION BETWEEN PANCREATIC NEUROENDOCRINE TUMOR AND PANCREATIC CANCER MATTER? It makes a big difference for research funding! While organizations such as PANCAN are devoted to pancreatic cancer research, NET Research Foundation invests specifically in NET research. NET Research Foundation is dedicated to finding treatments and cures on behalf of the approximately 170,000 people in the US with neuroendocrine tumors. It makes a difference for those affected by NET because it creates better understanding of the disease. News articles stating incorrect information about pancreatic cancer stir up more fear and anxiety for those battling NET. Accurate information fosters hope. HOW CAN WE SHOW R-E-S-P-E-C-T? (WHAT CAN I DO? ) The mission of LACNETS is to expand awareness and educate people about neuroendocrine cancer. If you read or hear incorrect information about NET, contact the news agency, publication, journalist, reporter, or editor to give constructive and respectful feedback. Some news services provide the ability to comment on news stories. Or respond via email or Twitter. (There are some useful links below that you can send.) Share accurate information about NET with your friends, family, and communities. Share your own story. Personal stories are powerful. HERE ARE CREDIBLE SOURCES WITH ACCURATE INFORMATION ABOUT NEUROENDOCRINE CANCER: What is the difference between neuroendocrine cancer and “pancreatic cancer?" Pancreatic Neuroendocrine Cancer vs Pancreatic Cancer, NETRF, published November 7, 2018 Pancreatic Neuroendocrine Tumors: A Rare Cancer, CCF, August 26, 2011 NET survivor Mitchell Berger has written an excellent NPR editorial explaining the difference between pancreatic neuroendocrine tumors and pancreatic cancer and calling for greater education and understanding about neuroendocrine tumors. Click here to read the article, " With a Spotlight on Jobs, Time to Talk About Cancer " (published August 25, 2011). General information about Neuroendocrine Tumor: American Society of Clinical Oncology’s Cancer.NET’s Guide to Neuroendocrine Tumors Canadian Neuroendocrine Tumor Society (CNETS)'s NET Facts International Neuroendocrine Cancer Alliance (INCA)'s NET Info Packs (available in 10 languages) Neuroendocrine Tumor Research Foundation (NETRF)’s Neuroendocrine Cancer Guide Image credit: MICHAEL OCHS ARCHIVES/GETTY IMAGE Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

As a patient , would you like to have better communication with your doctor? Would you like to maximize the time spent in your appointment? For healthcare providers , would you like to have all of your neuroendocrine cancer patients’ vitals in one document? Would you like to improve your clinic time with the patient to focus on patient needs? What is NET VITALS? LACNETS created NET VITALS as a quick snapshot of the most important questions for patients and healthcare professionals to know about neuroendocrine cancer. NET VITALS is a 20-question tool designed to highlight the vitals of NET cancer, all in one document. This allows the physician and patient to more easily communicate with all of the basics in one place. Think of NET VITALS as your NET passport. NET VITALS is a downloadable form which can be printed and filled out or completed as a PDF on a computer. It helps with record-keeping and prompts for scan image disks and reports. LACNETS thanks Dr. Dan Li at City of Hope for being our Medical Advisor on NET VITALS. Our goal is that NET VITALS will help patients and providers by empowering patients and improving patient-provider communication. Newly diagnosed? Are you newly diagnosed and want to learn the most important ‘vitals’ about your neuroendocrine cancer? NET VITALS is a guide to biomarkers, terminology and most common procedures and treatments. In just 20 questions, the patient and their family can learn about what the ‘vitals’ are in neuroendocrine cancer. It is not expected that the patient will be familiar with all of these terms, or know all of the answers. NET VITALS provides a working document for the patient to understand key vocabulary about their disease and a way to keep track of their status. Living with NETS? NET VITALS helps the patient keep current on their disease status and more easily communicate with their physician. NET VITALS can be particularly helpful when seeing a new doctor as part of the multi-disciplinary team or seeking a 2nd opinion. It’s a shortcut to communicate the patient’s disease status in a ‘snapshot’ and all in one place. NET VITALS history From Lisa Yen, NP, NBC-HWC: 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. 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 discussion 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: (1) The patient would become more familiar with their own disease through the process of filling out the worksheet. (2) 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. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

Escrito por Aimee Powell - 23 de agosto de 2021 (This blog post is also available in English, found here .) Cuando a mi hermano le diagnosticaron un tumor del cuerpo carotídeo en 2005, nos sentimos como si hubiéramos esquivado colectivamente una bala. Nos dijeron que la masa dura en su cuello (que temíamos que pudiera ser cancerosa) era benigna, y la única preocupación era el daño causado a sus cuerdas vocales durante la cirugía, inevitable debido al tamaño y la ubicación del tumor. Años más tarde, se encontraron tumores similares en el cuello y el abdomen de mi madre, pero la conexión entre sus antecedentes médicos no fue obvia hasta que a ella le dio un ataque cardíaco causado por la masa cerca de su glándula suprarrenal y recibieron un diagnóstico ominoso: feocromocitoma. "LA GRAN MÍMICA" Los feocromocitomas (feo) y los paragangliomas (para) son tumores neuroendocrinos raros que se forman principalmente a lo largo del sistema nervioso simpático. Los feocromocitomas se encuentran en la capa interna de la glándula suprarrenal llamada médula suprarrenal y los paragangliomas se forman cerca de ciertos vasos sanguíneos y nervios fuera de la glándula suprarrenal (también llamados feocromocitomas extra-adrenales). Aproximadamente el 80-85% de estos tumores son feocromocitomas y el 15-20% son paragangliomas. Los paragangliomas se encuentran con mayor frecuencia en la cabeza, el cuello, el torso y el abdomen y, al igual que otros tumores neuroendocrinos, pueden ser funcionales (secretores de hormonas) o no funcionales. Aunque los feos son conocidos por las grandes cantidades de hormonas suprarrenales que pueden producir, cualquier paraganglioma, en particular los que se encuentran en el tronco del cuerpo, puede volverse funcional, liberando ráfagas potencialmente mortales de epinefrina o norepinefrina. Cuando son funcionales, el diagnóstico se ve obstaculizado por el hecho de que los síntomas que causan pueden explicarse fácilmente por otras condiciones de salud más comunes. Estos síntomas incluyen: Dolor de cabeza Mareos Palpitaciones / latidos cardíacos rápidos Hipertensión (presión arterial alta) Sudoración Enrojecimiento Ansiedad Un sentimiento de condena. TODOS EN LA FAMILIA Aunque se describe en la literatura médica desde el siglo XIX, los feo / para sólo recientemente han comenzado a perder parte del misterio y la mitología que los rodea. Frases como “Regla de los 10”, el “10% de tumor” o “Uno y listo” han quedado relegadas al pasado. Las investigaciones sobre feo/ para ha proporcionado a médicos y pacientes información nueva y muy necesaria que, a su vez, ha tenido un efecto profundo en el diagnóstico y tratamiento de estos tumores. Algunos de los hallazgos más importantes se centran en la heredabilidad, o la medida en que una enfermedad es atribuible a factores hereditarios. Durante mucho tiempo se pensó que se heredaba en solo el diez por ciento de los casos, pero actualmente se hace referencia a feo / para como "el tumor más hereditario en los seres humanos". Si bien eso puede sonar un poco aterrador, nuestra familia encontró que la identificación de nuestra mutación / síndrome fue extrañamente empoderadora, lo que nos permitió (y a nuestro equipo de atención médica) luchar contra un enemigo que conocíamos, en lugar de un enemigo misterioso e impredecible. Aquellos diagnosticados con feo / para deben saber que: Aproximadamente el 40% de los feos / paras surgen debido a mutaciones genéticas heredadas; este número aumenta a más del 50% entre los paragangliomas que se encuentran en la cabeza y el cuello Hasta la fecha, aproximadamente 20 mutaciones genéticas, asociadas con una docena de síndromes genéticos, están implicadas en la formación de feo / para, incluyendo: Síndrome de neoplasia endocrina múltiple tipo 2 tipos A y B (MEN2A y MEN2B) Síndrome de Von Hippel Lindau Neurofibromatosis tipo 1 Síndromes de paraganglioma familiar 1-5 Tríada de Carney (paraganglioma / tumor del estroma gastrointestinal (GIST) y condroma pulmonar Carney-Stratakis Dyad (paraganglioma y tumor del estroma gastrointestinal) Leiomiomatosis hereditaria y cáncer de células renales (HLRCC) Debido a la alta tasa de herencia, el riesgo de recurrencia y la asociación sindrómica con otros cánceres, las pautas actuales recomiendan que todos los pacientes diagnosticados con feo / para sean remitidos a un asesor genético y se les realice un seguimiento anual durante al menos diez años después del diagnóstico. RARO, PERO NO SOLO A medida que la comunidad global de guerreros de feo / para ha crecido a lo largo de los años, se han formado grupos de apoyo para ayudar a los pacientes feo / para, sus familias y cuidadores. Además de proporcionar una gran cantidad de recursos sobre el feo /para y los síndromes relacionados, ofrecen ayuda para encontrar un médico, brindan apoyo entre colegas a través de reuniones remotas, patrocinan conferencias y otros eventos para los pacientes y sus familias, y brindan educación y recursos para proveedores de atención médica. Un diagnóstico poco común, especialmente uno asociado con tumores / cáncer, puede ser abrumador y un poco aislante. Si le han diagnosticado feo / para, hay personas en todo el mundo esperando para ayudarlo a navegar esta nueva parte de su vida. Lo siguiente representa una lista parcial de recursos para pacientes con feo / para. Para obtener una lista más completa, visite la página de Recursos the Pheo Para Project Resources page . Pheo Para Alliance Pheo Para Project VHL Alliance AMEND PHEiPAS Obtener más información sobre la Semana de apoyo sobre Pheo Para aquí . ¡Ayude a promover la conciencia entre los proveedores de atención médica participando en el Desafío de seis meses para cambiar el mundo Six Month Challenge to Change the World ! VIDEO: “FEOCROMACITOMAS Y PARAGANGLIOMAS” HAGA CLIC AQUÍ PARA OBTENER MÁS RECURSOS EN ESPAÑOL. MEET AIMEE POWELL Aimee Powell's involvement with the NET cancer community has its roots in her work as a caregiver for family members diagnosed with pheochromocytoma and paraganglioma. She has worked in an administrative capacity with nonprofits since 2005, and as a professional communicator for over twenty-five years. After her brother's death from malignant paraganglioma, she dedicated herself to raising awareness of para/pheo, and to assisting patients with these rare tumors. Aimee is the founder of the Pheo Para Project, past Executive Director of the Pheo Para Alliance, and currently sits on the board of directors for the SDH-Deficient Cancer Research Advocates. Aimee is also a LACNETS NETCONNECT mentor. She lives in the Greater Los Angeles area.