Neuroendocrine Neoplasms: A riddle wrapped in a mystery inside an enigma
The riddle.For many years, I've been reading and blogging about Neuroendocrine Neoplasms, NENs for short. NEN is a relatively new term which came after my diagnosis. Nomenclature is still evolving and there is always something to learn. It's also true to say the term 'Neuroendocrine Neoplasms' is the same as saying 'Neuroendocrine Cancer'. These neoplasms are cancers that begin in specialised cells called 'neuroendocrine cells'. Neuroendocrine cells have traits similar to those of nerve cells and hormone-producing cells, particularly the latter. In face one NET specialist said "While the name “neuroendocrine” implies that these tumors involve both nerve cells and…
Neuroendocrine Cancer – tumour markers and hormone levels
Originally published 2016, updated October 2025BackgroundSome people hear the terms "tumour markers" and "hormone levels" when they are diagnosed with Neuroendocrine Neoplasms (NENs). That might be confusing or even alarming at the time. Most people diagnosed with cancer will have had a form of medical testing at some point in their life, i.e. the sampling and testing of blood, urine, saliva, stool or body tissue. With NENs, the medical staff are just measuring the content of a 'substance' and then taking a view whether this is normal or not based on pre-determined ranges. These tests are normally done as a…
Weight – the NET Effect
ForewordAfter my first surgery in November 2010, I came out at the lightest weight I had been for many many years (10st 7lbs (147lbs)). 6-7 weeks later I went back to work and people privately commented that I shouldn't be at work, I looked too frail and ill. Perhaps it was because my suit no longer fitted me properly! That was an expensive year because I had to buy new suits, a requirement of my employment.Fast forward 4 years, I had to buy some more suits as my weight was going back on.Fast forward 14 years and my weight is…
Diabetes – The NET Effect
Originally published September 2018. Updated July 2024My chest infection is now settled, as too is the excitement and apprehension behind my first ever Ga68 PET - the outcome of that is still a work in progress. Earlier this year, my thyroid 'lesion' on watch and wait was given a 'damping down' with the prescription of a thyroid hormone supplement but I await a re-ignition of that small bush fire downstream.Bubbling behind the scenes and clamouring for attention is the spiking of my blood glucose test results and I was very recently declared 'at risk' for diabetes One of my followers…
Neuroendocrine Cancer – the diarrhea jigsaw
Reviewed and updated 5th July 2024Diarrhea can be a symptom of many conditions, but it is particularly key in Neuroendocrine Tumour (NET) Syndromes and types, in particular, so called Carcinoid Syndrome but also in those associated with various other NET types such as VIPoma, PPoma, Gastrinoma, Somatostatinoma, Medullary Thyroid Carcinoma.Secondly, it can be a key consequence (side effect) of the treatment for Neuroendocrine Tumours and Carcinomas, in particular following surgery where various bits of the gastrointestinal tract are excised to remove and/or debulk tumour load.There are other reasons that might be causing or contributing, including (but not limited to) endocrine…
The Syndromes of Neuroendocrine Cancer – Early Signs of a Late Diagnosis
Updated 14th June 2024 The Syndromes of Neuroendocrine Cancer - Early Signs of a Late Diagnosis There are some curious things about Neuroendocrine Cancer (NETs elsewhere in the text on the basis that a hormonal syndrome is extremely rare in Neuroendocrine Carcinoma (NEC)). One of them is that it can very often exhibit one or more vague symptoms collectively known as a 'syndrome'. Syndrome is an apt word to describe these complications as the most general meaning in medical terms is a group of symptoms that together are characteristic of a specific disorder or disease". Having a syndrome can often…
Neuroendocrine Cancer – Horrible Hormones
Updated and reviewed 20th March 2024 Hormonal imbalances are quite common in many conditions including day to day stuff. With Neuroendocrine Cancer, it can be a real challenge both at diagnostic and maintenance phases. In addition to the cancer angle, there's some strange stuff going on, inexplicable, frightening for the patient, an unwanted ingredient causing chaos!Until I was diagnosed with metastatic Neuroendocrine Cancer, I didn't have a clue about hormones - it's one of those things you just take for granted. However, hormones are vital to human health (male and female) and it's only when things go wrong you suddenly…
Neuroendocrine Cancer – Clinical Esoterica
The good news ....... things are improving, the latest US figures confirm two major changes:1. Most diagnoses are now early stage2. The disease is no longer rare and no longer an orphan diseaseOne of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people. As it's a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Some continue to struggle after.Neuroendocrine Cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or…
European Neuroendocrine Tumor Society 2023 guidance paper for functioning pancreatic neuroendocrine tumour syndromes
There is very much a multi-disciplinary team (MDT) approach to treating Neuroendocrine Tumours (NET) in Europe and many other places. In Europe and the extra-Europe CoEs in Australia, Israel and the USA, this is centred on the establishment of the Centre of Excellence programme that has been running since 2009. But underneath that are some excellent MDTs not yet accredited who may still utilise ENETs guidelines to treat and manage their patients. This 2023 guideline paper sets the scene for an important and complex group of tumours - pancreatic NETs. It's well known and accepted that the minority of pancreatic NETs…
The NET Detectives
The NET Detectives is an awareness post.Detecting NETsIn general, it's probably true to say that Neuroendocrine Tumours (NETs) are difficult to diagnose. Some are more complex than others and their heterogeneity is legendary. In many cases, they can be quiet, and imaging is key in finding them if they are big enough to be seen. As most primary care facilities (e.g. General Practitioner (GP) offices) don't have a range of imaging devices on site, referrals are often necessary to investigate more. I don't believe it's right to say this referral is a misdiagnosis, it's just another stage in the investigation,…
Neuroendocrine Cancer Hormonal Syndromes – a witch’s brew
One of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people. As it's a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Some continue to struggle after. Neuroendocrine Cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or introduce symptoms that mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma. In addition to common symptoms of flushing and diarrhea, others include…