You’ve just been told that you have neuroendocrine tumor, neuroendocrine cancer, or carcinoid. Your initial feelings may be panic, disbelief, despair, or even a sense of relief to finally have a diagnosis. After those initial waves subside and you’re thinking clearly again, the biggest question on your mind may be... “now what?”
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 and facts.
7 TIPS FOR THE NEWLY-DIAGNOSED PATIENT
(Click to scroll down for more on each tip.)
7 Basic Facts About NETs
(Click to scroll down for more on each fact.)
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 questionssc 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:
Tips for Newly Diagnosed Video by Josh Mailman, president of NorCal CarciNET
Read this excellent one-page synopsis about NET.
Read these 10 facts about NET.
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. The latest NCCN guidelines was recently published in 2018 and is endorsed by the Carcinoid Cancer Foundation, the Healing NET Foundation, NCAN, and NETRF. Because these 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.
Download this comprehensive guide for patients and families, courtesy of CNETS Canada.
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.
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.
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.
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:
UCLA (Santa Monica office), Medical Oncologist (GI)
2020 Santa Monica Blvd. Suite 600, Santa Monica, CA
Cedars-Sinai, Medical Oncologist
8700 Beverly Blvd, #LL North Tower, Los Angeles, CA 90048
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)
To find a NET specialist outside of Los Angeles:
Carcinoid Cancer 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.
Don’t forget to breathe. Stop. Remember the reason we try to educate ourselves is to LIVE. For most 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. Besides, it is just as important to take care of our emotional, mental, and spiritual health as it is our physical health. So, 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 walking on the beach, hiking, gardening, seeing a movie, or going to a museum or concert. When you feel rested and ready to resume your education, then 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.”)
7 Basic Facts About NETs
1. 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.
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 neoplasm (NEN) is another term sometimes seen in medical literature such as the World Health Organization (WHO) classification of NEN.
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 that affects about 6.98 in 100,000 people.
3. 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.
4. 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.
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. These symptoms are called carcinoid syndrome. You can learn more about carcinoid syndrome by clicking here.
6. 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.
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 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 recent 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.