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Everything you need to know about neuroendocrine tumors (NETs)

What Are NETs? What Causes NETs? Symptoms of NETs How Common Are NETs?

Types of NETs What May Happen Long Term? Your Care Team Questions to Ask Your Doctor

Diagnostic Tests Tumor Marker Tests

Imaging Methods Other Tests For NETs

Learn how to cope and live with neuroendocrine tumors (NETs)

Coping With Emotions Talking About NETs Gathering information about NETs Information For Caregivers

How are NETs treated? Liver-directed therapies Carcinoid syndrome treatments What to expect

Diet & Nutrition Keeping Track of Medical Care Traveling with NETs Working with NETs Managing Symptoms & Side Effects Hobbies & Interests Preparing for Imaging Scans Patient App

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What are symptoms of NETs?

Symptoms will vary depending on where the neuroendocrine tumors (NETs) are located in the body, how fast they are growing, and also if they have spread around the body. Symptoms will also depend on the type of NETs it is.

NETs may produce no symptoms at all, or the symptoms can be very vague and diverse, which can make them difficult to diagnose initially.

Visit the practical tips and tools section for information on the management of symptoms of NETs.

Typical delays to diagnosis

Many doctors are unfamiliar with NETs or neuroendocrine cancer, so they may be less likely to suspect this condition when they are faced with symptoms.

According to a global survey, it can take an average of 9 years before a diagnosis of NETs is made. A delayed diagnosis can happen for several of the reasons given below.

Symptoms

NETs produce symptoms that are common to many other diseases. These symptoms include diarrhea, flushing of the skin, stomach pain, and loss of appetite. Some people have no symptoms at all.

Misdiagnosis

Because NETs symptoms mimic other conditions they are often misdiagnosed as another condition such as irritable bowel syndrome (IBS), Crohn’s disease, or menopause.

Size

NETs are often small; some neuroendocrine cancers can be less than a centimeter in size.

Testing

There are many types of NETs, and a series of specific NETs tests may be necessary for a definitive diagnosis.

Early diagnosis of NETs

In some cases, NETs are found accidentally at an early disease stage during regular health checks, or during surgery for other conditions. An early diagnosis may help improve the course of some NETs.

Read about how common NETs are >