Neuroendocrine cells are a type of cell found throughout your body. Neuroendocrine tumors — which develop in these cells — can grow in a variety of areas. They are also sometimes called carcinoid tumors.
Depending on their location and type, neuroendocrine tumors may grow quickly or very slowly. Most are not as aggressive as other cancer types and many can be cured if they are caught early enough.
Rush has a neuroendocrine tumor program that brings together doctors who specialize in treating all varieties of neuroendocrine tumors.
Neuroendocrine tumor types
Neuroendocrine tumors can develop in the pituitary gland, thyroid gland (as medullary thyroid cancer), skin (as Merkel cell carcinoma), brain or ovaries. The most common neuroendocrine tumors include the following:
Gastrointestinal neuroendocrine tumors
Gastrointestinal neuroendocrine tumors occur most frequently in the small intestine. They can also occur in other parts of the digestive tract, including the stomach, duodenum, colon and rectum.
Gastrointestinal neuroendocrine tumor symptoms may include the following:
- Abdominal pain or bloating
- Diarrhea or constipation
- Weight loss for no known reason
- Blood in stool or a change in stool color
- Frequent flushing in the face, neck and upper chest
- Shortness of breath or wheezing
Pancreatic neuroendocrine tumors
Between 5 and 10 percent of pancreatic cancers are pancreatic neuroendocrine tumors. This type of tumor is sometimes called endocrine pancreatic cancer or islet cell cancer. Even though it starts in the hormone-producing cells in the pancreas, it does not produce those hormones in excess in most patients.
Symptoms vary widely and depend on whether the tumor makes additional hormones, and on what kind of hormones it makes. Some common pancreatic neuroendocrine tumor symptoms include the following:
- Weight loss for no known reason
- Abdominal pain
- Blood sugar that is too high or too low
- Skin rash on your arms and legs
Lung neuroendocrine tumors
About 2 percent of lung tumors develop in neuroendocrine cells. Lung neuroendocrine tumor symptoms are similar to other types of lung cancer and may include the following:
- A cough that does not go away and gets worse over time
- Coughing up blood
- Wheezing or hoarseness
- Pneumonia or bronchitis that does not go away or keeps coming back
Pheochromocytomas and paragangliomas
Pheochromocytomas develop in the adrenal glands. Paragangliomas develop in the sympathetic nervous system, which means and can occur in the abdomen, chest or neck.
Pheochromocytoma and paraganglioma symptoms are similar, and can include the following:
- Elevated heart rate or palpitations
- High blood pressure
- Blurred vision
- Excessive sweating
- Panic attacks
- Pale skin
- Weight loss for no known reason
Neuroendocrine tumor risk factors
Doctors don’t know exactly what causes neuroendocrine tumors. But evidence shows that the following hereditary conditions increase your risk of developing one:
- Multiple endocrine neoplasia
- Von Hippel-Lindau syndrome
- Neurofibromatosis type 1
- Tuberous sclerosis
It is also possible that smoking or having Type 2 diabetes may increase your risk of developing a neuroendocrine tumor.
How can I get help for neuroendocrine tumors?
If you think you may have a neuroendocrine tumor
If you have any of the symptoms listed above and they do not go away within a few days, contact your primary care doctor.
But keep in mind that these symptoms do not necessarily mean you have a neuroendocrine tumor. Neuroendocrine tumors are relatively rare, whereas their symptoms are common to many conditions.
Moreover, neuroendocrine tumors do not usually cause symptoms in their early stages. They are sometimes discovered during routine diagnostic tests, such as CT or MRI scans; or procedures, such as appendectomies or colonoscopies.
If you have been diagnosed with a neuroendocrine tumor or cancer of unknown primary origin
If you have been diagnosed with a neuroendocrine tumor, contact the neuroendocrine tumor program at Rush.
The team at Rush welcomes new patients, including those seeking second opinions.
They also welcome patients with cancer of unknown primary origin — a cancer whose location is unknown — which in some cases is discovered to be a neuroendocrine tumor.
Care for neuroendocrine tumors at Rush
As a patient in the neuroendocrine tumor program, you’ll have access to every specialist you might need, including surgeons, gastroenterologists, diagnostic and interventional radiologists, nuclear medicine specialists, medical oncologists, pathologists, geneticists and endocrinologists.
Your care team will work with you to develop a comprehensive treatment plan that is based on the most up-to-date research and tailored to your needs. Your plan will involve a combination of the following:
Your team at Rush may recommend one or more of the following imaging tests to pinpoint the location and type of your tumor, and determine which treatments are likely to be the most effective:
- Endoscopic ultrasound
- Octreotide scan, also known as 111-in-pentetreotide single photon emission computed tomography (SPECT), or by its brand name, Octreoscan
- 68-Gallium DOTATATE PET CT, the most sensitive diagnostic test for neuroendocrine tumors, which Rush is the first hospital in Chicago to offer
You may also need blood tests or fine-needle aspiration biopsy, a nonsurgical procedure during which doctors use a thin needle to obtain a tissue sample from a growth for the purpose of determining whether it is cancerous.
Surgery is often the primary treatment for neuroendocrine tumors. If a neuroendocrine tumor is caught before it has spread, surgery can often remove it completely.
Surgical treatment of liver metastases
For neuroendocrine tumors that have spread to the liver, the team at Rush offers leading-edge surgical techniques, including the following:
- Laparoscopic liver surgery, a minimally invasive procedure during which surgeons remove liver metastases through small incisions. This can lead to a faster recovery and shorter hospital stay, compared with traditional surgery.
- Associating liver partition and portal vein ligation procedure for staged hepatectomy (ALPPS), a new procedure that makes liver surgery available to some patients with liver metastases who previously were thought to have too little healthy liver tissue to be considered for surgery.
- Intraoperative microwave or radiofrequency ablation, in which cancer cells are destroyed during surgery by exposure to extreme heat.
- Liver transplantation. When the tumor is almost completely replacing the liver, replacing the liver through a transplant can sometimes be an option.
If the cancer is advanced or has spread to other parts of your body, your team may recommend one or more of the following options in addition to or instead of surgery:
- Chemotherapy, or drugs that can slow the growth of the tumor or stop it from making the hormones that cause unpleasant symptoms.
- Yittrium-90 radioembolization, in which a small amount of radioactive material is injected directly into the blood vessels that lead to your liver, targeting and destroying part of the tumor.
- Transarterial chemoembolization (TACE) or hepatic artery embolization (HAE), in which a cancer-fighting drug (chemotherapy) is injected directly into the blood vessels that lead to your liver, directly targeting the tumor.
- Microwave or radiofrequency ablation, a noninvasive procedure during which cancer cells are destroyed by exposure to extreme heat.
- Peptide receptor radionuclide therapy (PRRT), a treatment for metastatic neuroendocrine tumors. Rush is the first hospital in Illinois to offer PRRT, which is designed to target cancer cells in multiple places in the body without harming other tissues.
Why choose Rush for neuroendocrine tumor care
- A dedicated neuroendocrine tumor team: Because neuroendocrine tumors are rare and their treatment complex, it’s important to make sure your care team has the necessary expertise and experience. At Rush, you will find a team of physicians who specialize in treating these tumors.
- The most advanced diagnostic technology: Rush is the first hospital in Chicago to use 68-Gallium DOTATATE PET CT, the most sensitive diagnostic test for neuroendocrine tumors. It can pinpoint tumor location with over 90 percent accuracy, compared with the 30 to 70 percent accuracy of an octreotide scan, the next-most-sensitive test.
- Leading-edge surgical expertise: Surgeons at Rush are among a handful in the country who perform ALPPS, a new procedure that makes liver surgery available to patients who previously were thought not to have enough healthy tissue to undergo surgery.
- Genetic counseling: At Rush, genetic counsellors are available for patients whose neuroendocrine tumors have been linked to hereditary conditions such as multiple endocrine neoplasia, Von Hippel-Lindau syndrome, neurofibromatosis type 1 or tuberous sclerosis.
- Personalized medicine: Physicians at Rush have access to technology that can analyze your genetic profile to help determine the best course of treatment for your individual disease.