Neuroendo­crine Tumors

Neuroendocrine tumors form in special cells (neuroendocrine cells) that share traits of nerve and hormone-producing endocrine cells. You can find these cells throughout your body, so that’s why NETs can grow anywhere. You can get these tumors in your lungs, pancreas, appendix, digestive track and lymph nodes.

A NET happens when your endocrine cells start dividing and multiplying uncontrollably, creating a tumor. Some of these tumors can make too many hormones. Others might not deliver enough — or none at all. You might not notice anything different, or maybe you have a lot of symptoms that seem like you have the flu or another common conditions.

Signs and symptoms vary depending on the tumor’s type, location and other factors. For these reasons, no single test can diagnose a neuroendocrine tumor. Diagnosis requires a skilled medical team who knows all about these tumors and their effects on your body.

What to expect during your first visit

The first step in confirming a NET diagnosis is getting to know you. That’s why you’ll want to be prepared to share as many details as possible and answer a lot of questions during your first appointment.

During this conversation, we’ll ask things like:

• How have you been feeling?
• How long have you been feeling this way?
• Have you tried any other treatments before reaching out to us?
• Has anyone else in your family had neuroendocrine tumors?

The more we know about you and your health history, the better we can pinpoint what’s happening.

You’ll also have a physical exam during your visit. And we’ll likely order a number of tests to help us make a correct diagnosis.

Diagnostic tests for neuroendocrine tumors

If we think you may have a neuroendocrine tumor, you could have one or more tests, including:

• Blood and urine tests: Some NETs cause abnormal hormone levels, such as high levels of insulin or a hormone called 5-HIAA. Our providers look for these substances and other possible signs through blood tests and urinalysis. These tests can also diagnose or rule out other health conditions like infections.
• Imaging tests: A CT scan, MRI or positron emission tomography (PET) scan collects detailed pictures of organs or tissues inside your body. If you have a neuroendocrine tumor, these scans can help us learn more about where it is, how big it is and if it has spread (metastasized).
• Biopsy: If your imaging tests show you could have a neuroendocrine tumor, we may do a biopsy to get samples of cells, fluids, tissues or growths to look at under a microscope. In most cases, we use minimally invasive techniques like core needle biopsy.

Meet Our Neuroendocrine Tumor Team

When you come to Cleveland Clinic for neuroendocrine tumor diagnosis and treatment, you’ll have one of the largest teams of leading neuroendocrine tumor providers in the U.S. on your side. Your care team of providers from different specialties may include:

• Endocrinologists.
• Surgeons specializing in endocrine surgery.
• Gastroenterologists.
• Oncologists.
• Radiologists.
• Genetic counselors.
• Nurse practitioners.
• Physician assistants.

Depending on where your tumors are and the symptoms you have, you may have other specialized providers on your care team as your diagnosis and treatment move forward.

Second opinions for neuroendocrine tumors

A cancer diagnosis can be a real shock. You might be feeling anxious, worried and overwhelmed. You need to feel confident that you’ve chosen the right care team — one that will listen to your concerns, answer your questions and, most importantly, give you the best possible care. That’s why we encourage second opinions.

Our highly skilled neuroendocrine tumor team is here for you. They’ll take the time to answer questions, explain possible treatment options and offer guidance and support. And because we know that cancer doesn’t wait, we always try to schedule your appointment with us as soon as possible. A second opinion can give you peace of mind knowing that you’re in the most capable, compassionate hands.

There are a lot of things we consider when we sit down to craft your personalized treatment plan. We want to make sure we cover all of your unique needs and also account for what kind of tumor you have, where and how big it is and how it affects you. Your neuroendocrine tumor treatment may include:

Close monitoring

This approach works well for some slow-growing neuroendocrine tumors, so we can make sure the tumor doesn’t grow or change.

Surgery

Surgery is typically the mainstay of most neuroendocrine tumor treatment plans. Our endocrine surgery specialists do advanced, minimally invasive procedures with smaller incisions so you have a faster recovery. Your care team includes surgeons who specialize in removing these tumors, as well as endocrinologists and oncologists.

Medications

Our team knows all about the latest medications to treat every type of neuroendocrine tumor. If your tumors are large or have spread, you may have:

• Chemotherapy.
• Targeted therapy.
• Peptide receptor radionuclide therapy.
• Somatostatin analogs (control excess hormone levels).

Radiation therapy

If you can’t have surgery to remove the entire tumor, we may recommend radiation therapy. This treatment uses intense energy beams to destroy cancer cells. Our specialists use radiotherapy methods that target the tumor while protecting surrounding, healthy tissue.

Embolization

If the cancer has spread to other parts of your body, we may do a procedure called embolization. Your provider will inject substances into an artery through a long, thin tube (catheter) to block the blood flow to the cancer cells. This causes the tumor to shrink or grow more slowly.

Taking the Next Step

When you find out you have a complicated condition like neuroendocrine tumors, you probably have a lot of questions. And you most likely want to start treatment right away. Cleveland Clinic’s team of expert healthcare providers are here to help you get answers and put together a care plan that’s unique to you, your health and your needs. We have experience treating this uncommon cancer. And we’re here to guide you through every step of diagnosis, treatment and beyond.