Pancreatic Neuroendocrine Tumors (NETs)

What Are Pancreatic Neuroendocrine Tumors (NETs)?

It's natural to feel a little overwhelmed when you get news that you have a pancreatic neuroendocrine tumor (NET). If you're like most folks, it's probably be the first time you've heard of the condition. So take a little time now to tackle the topic. That will make it easier to work with your doctor on a plan of action to help you feel better and treat your tumor.

Pancreatic NETs grow in your pancreas, a gland in your belly that has two big jobs. It makes juices to digest food, and it makes hormones, which are chemicals that control different actions in your body. NETs grow in the cells that make hormones.

These tumors usually don't grow as fast as the more common kind of pancreatic cancer. Treatments can remove them, slow their growth, and make your symptoms better.

Every situation is different, and how you get treated depends on what type of NET you have. There are two kinds: "functional" and "nonfunctional."

Causes

No one knows what causes pancreatic NETs. People who have family members with a disorder called multiple endocrine neoplasia type 1 (MEN1), which can also affect the pancreas, are more likely to get them.

Other tumor-causing diseases that are passed down in families also raise your chances, including:

• Von Hippel-Lindau syndrome
• Neurofibromatosis type 1
• Tuberous sclerosis

Symptoms

Because nonfunctional NETs often don't cause symptoms until they become large or spread, doctors usually find them at a later stage.

Getting a Diagnosis

Before you get any tests, your doctor may have some questions for you. They'll want to know:

• How have you been feeling?
• When did you first notice changes?
• Do you have pain and where?
• How is your appetite?
• Have you been thirsty?
• Have you lost any weight?
• Have you noticed any skin rashes?
• Are you more tired than usual and when did this start?
• Do you have any medical conditions?
• Do you take any medications?
• Does anyone in your family have an endocrine disorder? What type?
• Do any illnesses run in your family?

Treatment

There are a number of treatments for NETs. Doctors can use surgery, chemotherapy drugs, and hormones. Your treatment will depend on:

• What kind of tumor you have (functional or nonfunctional)
• Whether it's cancerous or not
• How far it has spread

Taking Care of Yourself

You can help yourself feel better if you pay attention to what and when you eat. Try these tips:

• Rather than three big meals, eat smaller meals more often during the day. It's easier on your stomach and will keep your blood sugar steady.
• Stick to a healthy diet with more fruits, veggies, and whole grains.
• Eat fewer foods that are high in fats, especially animal fats.
• Don't drink alcohol.

What to Expect

NETs are very different diseases from the much more common type of pancreatic cancer. Compared to those tumors, which usually grow fast, NETs usually grow slowly -- over years, not months -- and treatments can get rid of many of them. A lot depends on the type of tumor, whether it's cancerous, and how much it has spread.

You have the best chance for a complete recovery when your tumor gets removed with surgery. Even if it can't be taken out, treating it can help you live longer and feel better.

Getting Support

It's important to take care of your emotional needs, too. Fortunately, you can turn to plenty of places for help. Make sure you reach out to your family and friends to get their support. They can help in all kinds of ways, big and small. Sometimes just a kind word or an offer to help you with a chore can make a big difference in how you feel.

Also talk to your doctor about how to find a support group near you. You'll get a chance to meet people who are going through the same things you are. Sharing experiences with others who face this condition can give you new insights on how to manage your disease.

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