DEAR NEWLY DIAGNOSED NET PATIENT (PART I)
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