Neuroendocrine Cancer

Neuroendocrine cancer is a rare disease that begins in neuroendocrine cells that are found in many different places in the body.

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Neuroendocrine cancers form in neuroendocrine cells that are spread throughout the body and create hormones that help the body function. Neuroendocrine tumors most often occur in the gastrointestinal tract, lungs, pancreas, ovary, cervix, thyroid and adrenal glands.

Neuroendocrine tumors often grow very slowly, but can spread to other areas of the body.

Leaders in neuroendocrine cancer

Because neuroendocrine cancers are so rare, very few centers have the deep expertise required to diagnose and treat them effectively.

At University of Iowa Health Care Holden Comprehensive Cancer Center, our team of neuroendocrine cancer specialists meet regularly to collaborate on accurate diagnosis, advanced care plans, treatments, and more. Our team includes specialists in gastroenterology, endocrinology, oncology, nuclear medicine, and genetic counseling. Our neuroendocrine cancer specialists are researchers who are working to find better ways to diagnose and treat neuroendocrine cancer.

We're also nationally and internationally recognized for our leadership in neuroendocrine cancer care and research. Our distinctions include:

First U.S. cancer center to earn Center of Excellence designation from the European Neuroendocrine Tumor Society
First in the nation to receive a Specialized Program of Research Excellence grant from the National Cancer Institute for neuroendocrine tumor research

Risk factors for neuroendocrine cancer

The cause of neuroendocrine cancer and what causes tumors to form is unknown.

Most people diagnosed with neuroendocrine cancer are in their 60s, but it can also be found in people of other ages. Neuroendocrine cancer affects men and women about equally.

But some things are known to increase your chances of getting neuroendocrine cancer, such as some inherited disorders and genetic abnormalities. This includes:

Multiple endocrine neoplasia type 1 (MEN1)
Neurofibromatosis type 1 (NF1)
Von Hippel-Lindau (VHL)
Tuberous sclerosis (TSC)

Signs and symptoms of neuroendocrine cancer

Not all neuroendocrine cancers will have symptoms you may notice. Symptoms of neuroendocrine cancer depend on where the tumor is inside the body. Common symptoms include:

Abdominal pain
Nausea, vomiting or diarrhea
Trouble breathing or wheezing
Chest pain
Coughing up blood

However, these can also be signs of many less serious conditions. Speak to your provider if you experience any of these symptoms.

How neuroendocrine cancer is diagnosed

In addition to reviewing your health history and your family history, and completing a physical exam, your provider may perform the following tests to determine if you have a neuroendocrine tumor:

Computed tomography (CT). A CT scan helps your providers see where the tumor is located.
Magnetic resonance imaging (MRI). An MRI scan can help get more detailed images of your body, allowing your provider to check for tumors.
Positron emission tomography (PET). A PET scan can also help produce detailed images of your organ and tissues to locate tumors and see if the cancer has spread to other parts of the body. This includes the Gallium DOTA-PET scanner, which provides fast, three-dimensional scans that are among the highest resolution available for diagnosing neuroendocrine tumors.
Biopsy. This test involves taking a sample of your tumor and viewing it under a microscope to see if any cancer cells are present.

Cancer patient in hallway at Holden Comprehensive Cancer Center

Every cancer diagnosis is unique.

That’s why getting a second opinion matters. Our cancer experts can confirm your diagnosis and help you understand all your treatment options.

Learn more about getting a second opinion

Treatments for neuroendocrine cancer

Each neuroendocrine diagnosis is different, and each treatment option should be, too. Our doctors and staff work with you and create a treatment program that will best fit you and your cancer.

Surgery. Can remove the tumor and surrounding tissue to treat neuroendocrine cancer and stop it from spreading.
Chemotherapy. May be paired with surgery to help kill cancer cells and shrink tumors using anticancer drugs.
Somatostatin analogs. Somatostatin analogs are a type of treatment that may stop your body from making too many hormones. This may slow down the growth of the tumor when cancer cells have spread to other part of the body.
Targeted therapy. Uses medications to target specific genes or proteins to kill cancer cells. One example of a targeted therapy is peptide receptor radionuclide therapy (PRRT), a molecular therapy that targets receptors on the surface of neuroendocrine tumor cells.
Theranostics. Linking radiation to molecular targets, this therapy allows specialists to selectively target cancer cells with radiation without damaging the healthy tissue that surrounds it.
Clinical trials. Clinical trials give you the opportunity to receive the most recent, advanced treatment options, such as drugs that are not yet on the market and other promising treatments that could increase your chances for recovery and improve your quality of life.