Newly Diagnosed
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 correct diagnosis. After those initial waves subside and you are thinking clearly again, the biggest question on your mind may be – “now what?”
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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 facts and tips.
SEVEN FACTS ABOUT NET
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1. Neuroendocrine cancer is also known as neuroendocrine tumor, or NET.
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2. NET is a rare cancer. Seven in 100,000 people are diagnosed per year in the United States.
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3. NET can affect neuroendocrine cells throughout the body.
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4. NET is a difficult cancer to diagnose.
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5. Some (but not all) NET patients have symptoms from their cancer.
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6. The cause of NET is unknown.
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7. Seeking the opinion of a NET specialist is important for all NET patients.
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1. Neuroendocrine Cancer is also known as Neuroendocrine Tumor, or NET.
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It is pronounced NOOR-oh-EN-doh-krin TOO-mer and often abbreviated as NET. Hear the pronunciation. There are many terms or acronyms you may hear. Here are some of them:
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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).
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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.
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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 localized (meaning it has not spread from where it originated from), many are malignant (meaning it has spread from where it originated from). You may still hear some physicians refer to NETs that originate from outside the pancreas such as the lung or small intestine as carcinoid tumors.
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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.
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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).
2. NET is a rare cancer. About 7 in 100,000 people are diagnosed annually in the United States.
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NET is considered rare by incidence, the number of patients diagnosed per year in the U.S. The prevalence of patients living with NET exceeds those living with stomach and pancreatic adenocarcinoma combined. Both the incidence and prevalence of NET are on the rise.
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3. NET can affect neuroendocrine 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. NET often spreads (or metastasizes) from the primary site of origin to the lymph nodes, liver and bones. The tumors that have spread are called metastases.
A Note About Prognosis:
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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 have been many recent advances in NET research, which have 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.
4. NET is a cancer that is difficult to diagnose.
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This is because not everyone with NET is symptomatic. 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.
5. 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.
6. The cause is unknown.
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 correlation, most have no known cause.
7. 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 expert, which may mean traveling outside of the area in which they live. Because NET is a rare disease, many doctors know little about it or the recent advances in diagnosis and treatment.
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A NET specialist can help guide your treatment plan. They can collaborate with your multidisciplinary doctors 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 received their care at a NET specialty center felt significantly more satisfied with their medical treatment and more knowledgeable than those who did not visit a NET specialty center.
1. Get organized
NET VITALS is an ideal place to start. NET VITALS is a downloadable document to collect and keep the essential information about your specific NET disease. This comprehensive, curated list, contains what you and your healthcare professionals need to know about your neuroendocrine cancer.
NET VITALS is a patient-physician communication tool, a “passport,” containing all the vital NET information in one location and simple to bring to your medical appointments. While it is not a medical document, it has been reviewed by NET specialists who agree that completing NET VITALS, as much as possible before their appointment, is helpful.
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Please note: NET VITALS is intended for informational and educational purposes only. LACNETS does not collect or store your information. It is for your personal use only.
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NET VITALS Helps:
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Educate you on what information is crucial to know about your NET disease.
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You organize, collect and compile this information into one comprehensive document that is easy to share with all healthcare professionals.
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Prepare you to ask relevant questions of your NET specialist for an optimal visit.
Record Keeping Tips:
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Many people choose a way to organize their information such as a three-ring notebook or file folder. If you keep paper copies of labs, imaging reports, and pathology reports, consider scanning them so you have a digital copy as well. This not only makes your records easier to access, it also ensures that you do not lose your only paper copy!​
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Download the Abridge app to record your healthcare visits and get transcriptions you can reveiw.
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To obtain second opinions, choosing an electronic system of record keeping on your computer or a cloud service can be helpful if you want to send information electronically.
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Some people track lab results on a spreadsheet to follow trends. Whatever method 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 needed. NET VITALS is an ideal place to keep your vital NET information.
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After every scan, go to medical records or the film library and ask for a CD of the scan images for your records. We recommend requesting two copies, one for your NET specialist and one for second opinions or other members of your medical team.
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Never give away your only copy of any CD, report or document.
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After any biopsy or surgery, ask your doctor for the pathology report. These are often unavailable in your online patient portal, so you may need to request a copy.
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After any surgery or procedure, ask for the operative report or procedure report. These are often unavailable in your online patient portal, so you may need to request a copy.
2. Educate yourself on the disease: Learn to speak "NET"
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Watch this short (~5min) “What is NET?”video. It is great to share with family & friends to help them learn and understand more about your cancer.
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Watch this helpful introduction to NETs presentation by NET expert Dr. Pamela Kunz, as well as the “NETs 101” presentation by Dr. Sandy D. Kotiah, Medical Oncologist at Mercy Medical.
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This informative presentation, “What to Expect with a NET Expert Consultation” by Dr. Heloisa Soares at Huntsman Cancer Institute.
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The LACNETS webinar, “Sequencing of Neuroendocrine Tumor Treatments” with Dr. Eric Liu, General Surgeon & Neuroendocrine Specialist at Rocky Mountain Cancer Center.
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Check out Triage Cancer’s valuable organization resources:
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The National Comprehensive Cancer Network (NCCN) is an alliance of the leading cancer centers across the country that develop and publish 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.
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Order your free Neuroendocrine Cancer Guide for patients and families from Neuroendocrine Tumor Research Foundation (NETRF).
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Download or request The Healing NET Foundation Navigating the NET Patient Journey peer-to-peer publication for patients and caregivers.
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Canadian Neuroendocrine Tumor Society (CNETS) has a downloadable Reference Guide for Patients and Families.
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The Global NET Patient Information Pack by the International Neuroendocrine Cancer Alliance (INCA) is available for download in 10 languages.
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Connect with and learn from others who are living with or have been affected by NET. Register for our Weekly Virtual Support Group every Wednesday from 12-1:30 PM Pacific Time.
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Subscribe to the LACNETS YouTube channel to find over 275 videos on various topics.
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3. Find Support
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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.
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Join our support community. We often hear people say, "I thought I was the only one with the disease." Connecting with others can help you feel less alone.
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Connect with a mentor. NETCONNECT connects you with another NET patient or caregiver for questions, support and more.
4. Find a NET Specialist
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Studies 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.
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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 gives you an idea of what one is like.
How to Find a NET Specialist:
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Neuroendocrine Tumor Research Foundation (NETRF) is a good place to start.
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Many of the NET specialists (including oncologists, surgeons, endocrinologists, etc.) have been speakers at past NET patient conferences and meetings. Find and watch NET experts from our Video Library. You may find it helpful to “see” the doctor before your appointment.
5. Decide who will be your quarterback
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Patients often see many doctors with different areas of expertise. Some patients seek opinions from multiple NET experts as well. The important thing is finding a physician who you feel listens to and addresses your concerns, explains things in a way you understand, and provides access to the treatments you need. A collaborative relationship is important, both with you and the rest of your team. Once you have selected your multidisciplinary medical team, decide who will lead and call the shots.
6. Attend a NET patient education conference
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Learn about upcoming virtual and in-person conferences hosted by LACNETS and the broader NET Community. It is worthwhile to stay connected and interact with NET experts, patients, caregivers and those who serve the NET Community.
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Click here to read "Why Attend NET Patient Education Conference"
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7. Breathe
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And last but not least, don’t forget to breathe. Stop to reflect and remember the reason we educate ourselves is to LIVE better. For most of us, living with NET is more like running a marathon than a sprint. Some feel a pressure to spend every waking minute learning about the disease so they don’t miss something that could mean the difference between life or death.
For the majority of NET patients, that is simply not reality. 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. Find the presence of mind to enjoy life’s simple pleasures like a walk on the beach, 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.
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SEVEN TIPS FOR THE NEWLY-DIAGNOSED PATIENT
1. Get organized
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