Acronyms Used in the Carcinoid and Neuroendocrine Tumor Community

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

APNETSAsia Pacific Neuroendocrine Tumor Society

CA – cancer

CAPTEM — chemotherapy combination of capecitabine and temozolomide

CCFCarcinoid Cancer Foundation

CNETS —  Carcinoid and Neuroendocrine Tumor Society; organizations in Canada, India and Singapore use this preceding their country name

CommNETsCommonweatlth Neuroendocrine Tumor Group

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

EAPexpanded 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

ENETSEuropean 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.)

FDAU.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

INCAInternational 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

MENmultiple endocrine neoplasia

MIBG — I-131-MIBG therapy  or scans — I-131 and MIBG where MIBG is Metaiodobenzylguanidine

MRI – magnetic resonance imaging

NANETSNorth American Neuroendocrine Tumor Society

NCANNeuroendocrine Cancer Awareness Network

NETRFNeuroendocrine Tumor Research Foundation

NDAnew 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

NIHU.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

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

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

TARETransarterial radioembolization, liver-directed therapy combining embolization with radiation therapy

TPN – total parenteral nutrition

UKI NETSUK and Ireland Neuroendocrine Tumor Society

VHLvon 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.

 

 

 

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