The Leeds Teaching Hospitals NHS Trust

Conditions & treatments

Neuroendocrine tumours (NETs) are rare. They develop from cells of the neuroendocrine system, which are found in organs including the stomach, bowel and lungs.

NETs are more common in people aged over 60. Some NETs may be called carcinoid tumours.

There are many different types of neuroendocrine cancers and treatments - click here for more information. 

click on this link for information on Research and Clinical Trials

When treatment is complete

When treatment is complete a member of the team will discuss what happens next and the support that is available. The neuroendocrine nurse specialist is available for advice and can be contacted on 0113 2068252. If this goes to answerphone, please leave a message and the Team will return your call. This may not be on the same day. 

It is important to keep a check for any new symptoms and to report these to the team.

The Neuroendocrine Cancer MDT aims to help and support all patients through and beyond treatment and to help manage any symptoms that cause problems.

Glossary of commonly used words and terms

Use this glossary to find the meanings of important terms that are sometimes used by the MDT 

Adrenal gland: A gland near the top of the kidney that creates hormones, like adrenaline and cortisol. Your body has 2 adrenal glands.

Adrenocorticotropic hormone (ACTH): hormone also known as corticotropin. It is produced by the adrenal gland.

Biopsy: A procedure where a small amount of tissue is removed from the body and examined under a microscope or using other tests to find out if there is a tumour.

Carcinoid: Has the same meaning as NET or GEP-NET (see below). The words may be used in place of one another.

Carcinoid syndrome: A set of symptoms that occur when a functional NET that releases the hormone serotonin begins to spread or metastasize. The symptoms may be sudden or severe.

Carcinoma: Cancer that starts in the skin or in tissues that line or cover internal organs.

Chemotherapy: The use of drugs to destroy cancer cells, usually by affecting their ability to grow.

Differentiation/differentiated cells: In normal cells, differentiation is the process that changes a general, less specialized cell to a more specialized cell that has a specific job in the body. In tumor cells, differentiation refers to how developed the cells are. Differentiated tumour cells look like normal cells. Undifferentiated, or poorly differentiated, tumour cells don’t have the structure of normal cells, and don’t work the way normal cells do. Poorly differentiated tumour cells usually have a better chance of being malignant.

Duodenum: The first part of the small intestine, connected to the stomach. The duodenum gets enzymes from the pancreas and chemicals from the liver and the gallbladder to help with digestion.

Endocrine system: A group of glands and organs that control different body functions by producing and releasing hormones.

Functional NET: A NET that releases hormones and may cause many different symptoms. Also called a secretory NET.

Gastrin: A hormone released by the pancreas that tells your stomach to produce digestive acids and enzymes.

Gastroenteropancreatic NET (GEP-NET): A NET that most often starts in the gastrointestinal tract or pancreas.

Gastrointestinal (GI) tract: Another name for the digestive system. It includes the mouth, throat, oesophagus, stomach, small intestine, large intestine, rectum, and anus.

Glucagon: A hormone released by the pancreas that raises glucose (sugar) levels in your blood.

Grade: A system of classifying tumor cells. The cells are graded based on how they look under a microscope and how quickly the tumour is likely to grow and spread. Low-grade tumours (grades 1 and 2) look like the tissue around them. They are less aggressive. High-grade tumours (grades 3 and 4) do not look like the tissue around them. They are more aggressive.

Growth hormone-releasing factor (GRF): A chemical released by the brain that tells the pituitary gland to produce growth hormone.

Hormone: A substance, usually a protein, that is released and travels through the bloodstream to different organs. Hormones help control how some of the organs in the body work.

Hyperglycemia: The condition of having high levels of glucose (sugar) in your blood. Symptoms include dry mouth, thirst, frequent urination (including at night), blurry vision, and dry, itchy skin.

Hypochlorhydria: The condition of having low levels of hydrochloric acid in your stomach. Symptoms include halitosis (bad breath), heartburn, bloating or belching, gas right after eating, and indigestion..

Hypoglycemia: The condition of having low levels of glucose (sugar) in your blood. Symptoms include dizziness, headache, tiredness, and confusion.

Hypokalemia: The condition of having low levels of potassium (salt) in your blood. It may be caused by diarrhoea.

Insulin: A hormone released by the pancreas that lowers glucose (sugar) levels in your blood.

Lesions: Areas of abnormal tissue that may or may not be cancerous.

Metastasize: To spread from one part of the body to another. The words “localized,” “regional,” and “distant,” are sometimes used to describe how much a NET has spread, or metastasized.

Nonfunctional NET: A NET that doesn’t release hormones. This type of NET may only cause symptoms when it grows. Also called a nonsecretory NET.

Pancreas: An organ that produces hormones and enzymes that help your body digest food.

Pellagra: A condition caused by low levels of niacin (a B vitamin) in your blood. Symptoms include diarrhoea, scaly skin rash, mental confusion, and inflamed mucus membranes.

Proteins: The basic building blocks of tissue and other structures in the body. An enzyme is a kind of protein that causes chemical changes in your body.

Radiation: A form of therapy used to kill cancer cells by damaging their DNA. Radiation can damage normal cells too, so treatment should be carefully planned to decrease side effects.

Radiology: The use of radiation to treat or diagnose disease.

Radiotherapy: The use of high-energy radiation to destroy cancer cells and shrink tumours. The radiation may come from a machine outside the body or from radioactive material that is placed in the body near cancer cells.

Serotonin: A hormone made by certain types of cells in the body, mostly in the gastrointestinal tract. Serotonin helps with various functions, including digestion.

Somatostatin: A hormone that stops the release of other hormones, including gastrin, insulin, glucagon, and serotonin (see definitions for these hormones in this glossary).

Specialized cells: Cells that have specific jobs in the body. They start as unspecialized cells, also known as stem cells, which are present in babies still in the womb. Unspecialized cells can turn into any kind of cell. The DNA in the cell determines the kind of cells they will become. The cells then grow and change shape, becoming specialized cells.

Stage: How far cancer in the body has progressed. Staging is usually based on the size of the tumour, whether lymph nodes in the body contain cancer, and whether the cancer has spread from the original site to other parts of the body.

Syndrome: A set of symptoms that occur together. A syndrome may be a sign of a certain disease. Or it may mean there’s an increased chance of developing the disease. For example, hypoglycemia syndrome may be caused by a type of NET called an insulinoma, and Zollinger-Ellison syndrome may be caused by a type of NET called a gastrinoma.

Thymus: An organ near the base of the neck that produces infection-fighting cells.

Thyroid: A small gland in the neck, just under the skin below the Adam’s apple. It produces thyroid hormones, which help control metabolism.

Tumour: An abnormal growth or mass in the body caused when cells grow out of control or don’t die when they are supposed to.

Ulcer: A round sore where the lining of the stomach or duodenum has been eaten away by stomach acid and digestive juices.

Unspecialized cells: Also known as stem cells. These cells are present in babies still in the womb. They can turn into any kind of cell. The DNA in the cell determines the kind of cells they will become. The cells then grow and change shape, becoming specialized cells with specific jobs in the body.

Vasoactive intestinal peptide (VIP): A substance released by the pancreas that causes watery diarrhoea.

Wheezing: A whistling sound made during breathing that happens when airways become partially blocked. Some tumours can squeeze an airway and cause the blocking.