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Neuroendocrine Cancer Community

Terminology & Abbreviations

There are a number of acronyms used to describe different Neuroendocrine Cancers. Here are some that you might hear your care team use.

Neuroendocrine Cancer was first described as a specific disease in the mid-1800’s – since then it has been given a variety of different names based on the available knowledge and understanding at the time – including, along the way, the discovery of certain peptides and hormones – and what they do in the body.

In 1907, the term ‘Carcinoid’ was applied – from the German word for “cancer-like”. This term became very popular amongst the medical community of the time, as it was believed that neuroendocrine cancer behaved very differently to common cancers. It was thought that all Neuroendocrine Cancers were very indolent, that is, very slow growing and unlikely to spread or behave in the same way as other malignancies.

It was also believed that all “Carcinoids” were functional – that is, that they all produced a hormone -related syndrome.

This proved untrue and it is now recognised that most Neuroendocrine Cancers are non-functioning.

By the 1950’s however, it was clear that these ‘Carcinoids’ could behave like common cancers, and that whilst many may grow slowly, they shared other cancers’ ability to spread to other parts of the body, and some could indeed grow as rapidly.

“Carcinoid” became “Neuroendocrine Tumours” or “NETs”.

Knowledge continued to grow – and with it a growing need to better define the differences between Neuroendocrine Tumours – based on how they grow and behave, produce hormones and peptides and look when examined  under a microscope.

More recently, a new term has been proposed and is now being used, though mostly in medical publications – Neuroendocrine Neoplasm (NEN – neoplasm means new growth) – though in practice, you may still hear the terms ‘carcinoid’ and NET mentioned.

To simplify  – we use the term Neuroendocrine Cancer throughout our website and information resources – to refer to all malignant types of NEN.

Here we list some of the terms and abbreviations you may come across – or your medical team may use – to explain Neuroendocrine Cancer – its types, tests and treatments:

Further information on the differences in Neuroendocrine Cancer can be found here.

General Terms:

Benign – not cancer : may also be incorrectly used, to refer to very slow growing cancers to describe non-aggressive growth rate. Benign behaviour (that is, very slow growth rate) does not necessarily mean ‘not cancer’

CHDCarcinoid Heart Disease (link to NCC)

CNS – Clinical Nurse Specialist (may also mean Central Nervous System)

CR – colorectal – refers to the large bowel and rectum

CSCarcinoid Syndrome (link to NTRS)

CUP is a Cancer of Unknown Primary – where the primary site cannot be confirmed

Differentiation describes how much or how little cancer cells looks like the normal cells they were. Well-differentiated cancer cells look more like normal cells and tend to grow and spread more slowly than poorly differentiated or undifferentiated cancer cells

Familial – relating to or occurring in a family – the words ‘genetic’ or ‘inherited’ may also be used

Functioning – where Neuroendocrine Cancer cells produce and release abnormal amounts of the hormone or chemical they are usually responsible for

GEP-NET – a Neuroendocrine Tumour of the GastroEnteroPancreatic system – in other words a NET that may occur in the stomach, duodenum, small bowel or pancreas

GI NET – a Neuroendocrine Tumour that may occur in the oesophagus, stomach, duodenum or small bowel

gNET – gastric (stomach) Neuroendocrine Tumour

Grade / Grading – is an essential assessment and measurement of how neuroendocrine cancer cells are developing. How slowly or quickly they are growing or likely to grow

HPB – Hepato-Pancreato-Biliary – refers to the liver, pancreas and bile duct system

Ki67 – is a protein present in cells and is involved in cell growth and division. By using this protein to stain cancer cells, an assessment can be made as to how slowly or quickly the cancer cells are likely to grow and spread. The higher the percentage the quicker growth can occur

Malignant – cancer

MDM – Multidisciplinary Meeting

MiNEN is a Cancer that has features (under a microscope) of both neuroendocrine cancer (NET or NEC) and a non-neuroendocrine cancer – for example adenocarcinoma (most common form of cancer).

Neuroendocrine Carcinoma, or NEC is a Neuroendocrine Cancer, graded as 3b, that has a particular appearance under the microscope – these abnormal changes are called poorly differentiated

Neuroendocrine Neoplasm, or NEN, all abnormal growths of the neuroendocrine system – benign or malignant. Neoplasm meaning new growth

NMENecrotising Migratory Erythema (link to NTRS)

Non-functioning – where neuroendocrine cancer cells usually retain their ability to release normal amounts of hormone or chemicals

PDNEC – Poorly-Differentiated Neuroendocrine Carcinoma

pNET – pancreatic Neuroendocrine Tumour

Primary Cancer is a term used to describe where, in the body, a cancer starts – for example Pancreas

Secondary Cancer is a term used to describe cancer has that has spread beyond the primary site. May also be describe as metastasis (for one secondary cancer) or metastases (to described more than one secondary cancer)

SINEN – Neuroendocrine Cancer (NET or NEC) of the Small Intestine (small bowel)

Sporadic – arising or occurring randomly – not familial, genetic or inherited

Staging – tells us whether the cancer is localised (limited to the area in which it arises) or disseminated (has spread to other places in the body). Staging is usually assessed by scans

Tumour – is a term used to describe a collection of abnormal cells – a growth, lesion, nodule or polyp — usually malignant

WDNET – Well-Differentiated Neuroendocrine Tumour

ZESZollinger-Ellison Syndrome (link to NTRS)

Abbreviations used in Tests 

5HiAA
5-hydroxyindoleacetic acid

CgA – Chromogranin A

CgB – Chromogranin B

CT scan – Computerised Tomography scan

ERCP – Endoscopic Retrograde Cholangiopancreatog-raphy

EUS – Endoscopic Ultrasound scan

FDG PET – fluorodeoxyglucose (FDG)-positron emission tomography (PET)

Gallium PET – Gallium positron emission tomography

GHP – Gut Hormone Profile

MRI – Magnetic Resonance Imaging

OGD – oesophago-gastroduodenoscopy

PPPD – Pylorus-preserving pancreaticoduodenec-tomy

PTC – Percutaneous transhepatic cholangiography

SSA – somatostatin analogue

USS – Ultrasound Scan

VATS – Video-assisted thoracoscopic surgery

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Neuroendocrine Cancer UK is a UK wide charity solely dedicated to providing support and information to those affected by Neuroendocrine Cancer.

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