What are Neuroendocrine Tumors (NETs)?

What Are Neuroendocrine Tumors (NETs)?

When you first hear that you've got a neuroendocrine tumor, you'll have lots of questions about what it is and how it will affect you. There are quite a few types of this disease, and it can show up in many places in your body.

Your symptoms may depend on where your tumor is growing and what kind it is. Learn as much as you can about your own type of NET, so you can be a confident partner with your doctor when you make decisions on a treatment plan.

While all this is going on, don't neglect your emotional needs. Your doctor can tell you how to find a support group where you can talk to others who are going through the same things you are. And feel free to open up to your friends and family about how you're doing. They know you best and can be a huge source of support.

The first thing you want to find out about your condition is where your tumor is located. NETs grow in cells that make hormones -- chemicals that help control different actions in your body, like hair growth, your sex drive, and even your mood. A neuroendocrine tumor can grow in spots like your pancreas, a gland in your belly. It can also happen in your stomach, intestines, or lungs.

Causes

Most of the time, doctors don't know what causes NETs. But you're more likely to get them if you have certain diseases that run in your family, such as:

Multiple endocrine neoplasia type 1. This causes tumors to grow in the pancreas and other organs.

Neurofibromatosis type 1. This can cause tumors in your adrenal glands.

Von Hippel-Lindau syndrome. It makes tumors and fluid-filled sacs form in many parts of your body.

Symptoms

How a neuroendocrine tumor makes you feel depends on the type you have and where it is in your body.

Getting a Diagnosis

When you see your doctor, they'll give you a physical exam, and they'll want to hear about how you're feeling. They might ask you questions like:

• How long have you been feeling this way?
• Do you have any pain? Where?
• How is your appetite?
• Have you gained or lost any weight?
• Do you feel weak or more tired than usual?
• Do you have any skin rashes?
• Do you have any medical conditions?
• Are there any illnesses that run in your family?

Treatment

Doctors can treat NETs with surgery, radiation, chemotherapy, and drugs. The treatment you get will depend on:

• What kind of tumor you have and how many there are
• Whether it's cancerous
• If it has spread to other parts of your body

Surgery. It's one of the most common treatments for many NETs. It can completely remove some tumors, especially those that aren't cancer and haven't spread.

A surgeon might be able to take out just the tumor. Or they may remove part or all of the organs that have a NET, like the pancreas, stomach, or liver.

Doctors can also use other kinds of surgery for people who can't have a traditional operation or who have many, small tumors.

In one type, called radiofrequency ablation, your doctor will put a probe into the tumor that gives off high-energy radio waves, which kills cancer cells in a certain area.

Taking Care of Yourself

Along with following your treatment, you can try other things to ease your symptoms. Talk to your doctor about what's bothering you and ask them what you can do to feel better.

NETs can make it hard to stay at a healthy weight, so focus on eating the right types of foods to get enough nutrition.

• Get extra protein from fish, eggs, cheese, and beans.
• If you feel sick to your stomach, try eating smaller meals more often, instead of three big ones. Ginger ale might help calm your stomach.
• Avoid high-fat foods, sweets, and sugary drinks.

You might want to try acupuncture, massage, or yoga to help you relax and manage your symptoms while you're getting treatment. Check with your doctor before you start any new activities, though.

Get the advice of your family and friends, and ask them to pitch in when you need some extra help.

What to Expect

How a NET affects you depends on the type of tumor you have, whether it's cancerous, and how much it has spread. But with the right treatment, doctors might be able to shrink the tumors or get rid of them completely.

Getting Support

For information on NETs and support groups, contact the NET Patient Foundation or the Carcinoid Cancer Foundation.

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