A substance that is broken down (metabolized) from serotonin. A high level of 5-HIAA in a 24-hour urine test sample can be used to confirm whether a person’s symptoms, such as flushing of the skin (particularly the face) and diarrhea, are due to carcinoid syndrome. 5-HIAA also can be done by blood known as the 5-HIAA Serum.

A rare and aggressive subtype of goblet cell carcinoid, a distinct tumor of the appendix characterized by both neuroendocrine and glandular differentiation. Patients often present with chronic abdominal pain or symptoms of acute appendicitis.

A rare form of cancer which forms in the outer layer of the adrenal gland. Symptoms can include abdominal pain.

Composite particles (2 protons and 2 neutrons) emitted from the nucleus of some radionuclides. See also: Targeted Alpha-Emitter Therapy (TAT)

Naturally occurring organic compounds in foods which are a result of bacteria breaking down amino acids/proteins. High Amine Foods are often poorly tolerated by GEP Neuroendocrine patients diagnosed with Carcinoid Syndrome.

A type of immunotherapy called a checkpoint inhibitor. It stimulates the body’s immune system to fight cancer cells. Avelumab targets and blocks a protein called PD-L1 on the surface of certain immune cells, which activates the immune cells to find and kill cancer cells.

A type of immunotherapy used to block proteins (CTLA-4, PD-1, and PD-L1) that stop the immune system from attacking cancer cells.

Research studies to discover and develop new medical drugs or procedures. Participating patients’ results give indications of the safety and effectiveness for new treatments.

Diagnostic test utilizing PET imaging with the radioactive drug, Copper 64 Dotatate. This scan identifies the location of somatostatin receptor positive Neuroendocrine tumors.

Tests that help a medical team to confirm or rule out conditions and diseases before deciding a patient’s diagnosis. This information is critical before creating the best treatment plan.

Medical diagnosis of too much fat stored in liver cells.  Can be a result of obesity, diabetes, or high triglycerides. See also: NAFLD

Also known as Neuroendocrine cancer of the stomach. Currently considered very rare. There are 3 Types of G-nets which are classified upon their location within the stomach and their type of association with other syndromes or infections. Surveillance and treatment may vary according to Type. Knowing the Gastric Nets Type is equally as important as knowing the Stage and Grade of a G-Net.

Type 1 is often associated with H.pylori infection and/or auto-immune gastritis. It is the most common type of Gastric nets, usually very small and presenting in multiple. It rarely is an aggressive disease.
Type 2 is often found in conjunction with MEN1 or Zollinger Ellison syndrome. These tumors are also typically very small with multiple presentation. Slightly higher chance of metastasis than Type 1.
Type 3 may be well or poorly differentiated tumors, considerably larger than Types 1 and 2. Type 3 is the most aggressive and is more likely to grow in size and/or metastize.

A NET that most often starts in the gastrointestinal tract. GEP-NETs are sometimes called carcinoid tumors or islet cell tumors.

Medical care helping terminally ill patients maintain quality of life; usually focusing on pain management and emotional support for the patient and family, with typically no extraordinary measures to prolong life.

A method of assigning degree of tracer uptake. Most frequently used with an Octreotide Scan. Occasionally it is used as an indication of a patient’s acceptability for PRRT Therapy. The Scores range from 0 (not acceptable) to 4. A score greater than 2 indicates consideration for PRRT.

An isotope used in radiopharmaceutical therapy.

A radioactive medicine used for somatostatin receptor-positive gastroenteropancreatic neeuroendocrine tumors (GEP-NETs). It binds itself to a specific part of certain tumor cells, allowing the radiation to enter and destroy those cells.

A complex abdominal organ of continuous tissues which is a double fold of the peritoneum. It’s function is to hold your intestines in place by attaching to the abdominal wall. The mesentery houses lymph nodes and produces proteins. Can be a frequent site for metastasis.

A rare tumor which contains both Neuroendocrine and non Neuroendocrine characteristics (frequently adenocarcinoma/adenocarcinoma). Most typically found in the GEP-Net tract.