(Updated 2022)
Whether you are newly diagnosed, a friend or family member of a carcinoid/neuroendocrine tumor (NET) patient, or someone living with the disease for a long time, the language used in the carcinoid/NET community, especially the acronyms, can seem like alphabet soup! Here is a list of some of the most often used acronyms relating to carcinoid/NETs tests, treatments, and organizations.
With special thanks to ACOR, the online carcinoid support group, for conceptualizing this list and providing the initial entries. We invite the community to submit additional acronyms for the list by contacting the Carcinoid Cancer Foundation at carcinoid at carcinoid.org. Please include the acronym, spell out the meaning, and include a brief description, if available. Thank you!
ANA – an ANA test detects antinuclear antibodies (ANA) in your blood
APNETS — Asia Pacific Neuroendocrine Tumor Society
CA – cancer
CAPTEM — chemotherapy combination of capecitabine and temozolomide
CCF – Carcinoid Cancer Foundation
CNETS — Canadian Neuroendocrine Tumour Society (CNETS) in Canada, (CNETSINDIA) India and Singapore use this preceding their country name
CommNETs — Commonwealth Neuroendocrine Tumor Group
Copper 64 (64Cu) — a positron and beta emitting isotope of copper, with applications for molecular radiotherapy and positron emission tomography
C-diff – Clostridium difficile (a bacterium)
CT – computerized tomography, an anatomical imaging technique, essentially a series of X-rays,
used to observe bones, blood vessels and soft tissues inside the body
DIPNECH — Diffuse Idiopathic Pulmonary Neuroendocrine Cell Hyperplasia
DOTATATE — “a substance which, when bound to various radionuclides, has been tested for the treatment and diagnosis of certain types of cancer, mainly neuroendocrine tumors.”
DX – diagnosis
EAP – expanded access program (“sometimes called ‘compassionate use,’ is the use outside of a clinical trial of an investigational medical product, i.e., one that has not been approved by FDA”)
EGD — esophagogastroduodenoscopy
ENETS – European Neuroendocrine Tumor Society
EUS– endoscopic ultrasound, a minimally invasive procedure to assess digestive (gastrointestinal) and lung diseases. It uses high-frequency sound waves to produce detailed images of the lining and walls of your digestive tract and chest, nearby organs such as the pancreas and liver, and lymph nodes.)
FDA – U.S. Food and Drug Administration
FDG – fluorodeoxyglucose, a radiopharmaceutical used in the medical imaging of tumors which are
metabolically active (i.e. – having high mitotic rates)
FNA – fine needle aspiration
Ga-68 – gallium 68, a positron-emitting radioisotope; Gallium-68 PET/CT is used to image neuroendocrine tumors
IN-111 — Indium 111, an isotope of indium, used as a radioactive tracer
INCA – International Neuroendocrine Cancer Alliance, an international federation of patient advocacy
groups primarily focused on promoting awareness of neuroendocrine tumors
IV — intravenous
Ki-67 — a protein that is a cellular marker used strictly for cell proliferation
Lu-177 — Lutetium 177, a radioactive substance that is added to a carrier, such as DOTATATE, used in targeted therapy for neuroendocrine tumors
MEN — multiple endocrine neoplasia
MIBG — I-131-MIBG therapy or scans — I-131 and MIBG where MIBG is Metaiodobenzylguanidine
MRI – magnetic resonance imaging
NANETS – North American Neuroendocrine Tumor Society
NCAN — Neuroendocrine Cancer Awareness Network
NETRF — Neuroendocrine Tumor Research Foundation
NDA – new drug application
NEC — neuroendocrine carcinoma
NED – no evidence of disease
NEN — neuroendocrine neoplasm (a term used primarily by medical professionals for neuroendocrine tumors)
NET cancer — neuroendocrine cancer
NETs – neuroendocrine tumors
NIH – U.S. National Institutes of Health
NSAID – non-steroidal anti-inflammatory drug
PET – positron emission tomography, a functional imaging technique that is used to observe
metabolic processes in the body
PET/CT — Positron emission tomography–computed tomography
PFS — Progression free survival
pNET — pancreatic neuroendocrine tumor
PICC — peripherally inserted central catheter (line)
PPN – partial parenteral nutrition
PPI – proton pump inhibitor
PRRT/PRRNT – peptide receptor radionuclide therapy, a molecular therapy used to target somatostatin analog receptors on tumor cells inside the body
PT – patient
PubMed — the US National Library of Medicine, National Institutes of Health, excellent resource for medical articles published about neuroendocrine tumors
RLT — radioligand therapy, an innovative type of cancer treatment that uses nuclear medicine to target and treat cancer cells with precision. PRRT is a type of RLT
Rx — a medical prescription
SIBO – small intestinal bacterial overgrowth
SIRT – selective internal radiation therapy (aka ‘spheres’)
SSA – somatostatin analog(ue), for example octreotide and lanreotide are commercially available SSAs
prescribed to patients with NETs to reduce symptoms and inhibit tumor proliferation
SSD (SSDI) — Social Security Disability
SSRI – selective serotonin reuptake inhibitor
Sub-q — subcutaneous
SUV – standardized uptake value, a nuclear medicine term
TACE — Transarterial Chemoembolization, a minimally invasive, image-guided treatment for liver cancer tumors
TARE — Transarterial radioembolization, liver-directed therapy combining embolization with radiation therapy
TPN – total parenteral nutrition
UKI NETS — UK and Ireland Neuroendocrine Tumor Society
VHL— von Hippel-Lindau syndrome
Y-90 – yttrium-90 isotope of yttrium
Online discussion groups often use acronyms that are frequently used when sending text messages. You can find those acronyms in The Free Dictionary http://acronyms.thefreedictionary.com/, and in Webopedia, http://www.webopedia.com/quick_ref/textmessageabbreviations.asp.
