One of the most controversial aspects of Neuroendocrine Tumours (NETs) is the ‘benign vs malignant’ question. It’s been widely debated, and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ….. at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (….or not been told). This post will not cover Neuroendocrine Carcinoma which by standard cancer nomenclature definition is malignant.
Any standard cancer nomenclature definition of the word ‘tumour’ will confirm the definition of the word tumour means it can either be benign or malignant. The other connotation of ‘benign’ is that some might say it is not a cancer. But let’s be clear, Neuroendocrine Tumours are cancer.
However, and while I’m sure there are some NETs which might be academically described as ‘benign’, the key statement to explain any slow-growing or indolent NET is that they all have malignant potential – thus why surveillance and follow-up are really important. This was the key factor in the changes found in the 2010 Digestive System World Health Organisation (WHO) classification system from the previous ‘flaky’ version. This reinforcement of the malignant potential of all NETs was duplicated in the recent 2017 Endocrine System and 2019 Digestive System equivalents, which is now proposed as a classification scheme for all NETs (see below).
“Carcinoid”
Of course, we are not helped by the continued use of the term Carcinoid which decodes to ‘Carcinoma Like’ – that is potentially regressing the work of those specialists who are trying to undo over 100 years of complacency in the medical world (….. and it’s not really the type of awareness we need). The word is gradually being erased from NET nomenclature and the recent 2018 proposal by the International Agency for Research on Cancer (IARC) and WHO NET expert consensus panel to ditch it from the remaining versions of out of date WHO classifications (e.g. Pulmonary/Lung, Pituitary, Head & Neck, Genito-urinary, Adrenal and Paraganglia, Skin), may be the final nail in the coffin for Carcinoid. RIP Carcinoid. This also supports our awareness issues with the media reporting the wrong cancer types based on anatomy of the primary tumour.
Dear Doctors, Patient Advocates, Patients ….. Please stop using the word, it’s not helpful!
I’ve lost count of the stories from Neuroendocrine Cancer patients who have been told their tumour was benign but then returned to specialists at a later stage with incurable and metastatic cancer. There are doctors who clearly do not understand NETs and/or are not aware of the changes in WHO classification schemes from 2010 onwards. Sure, some will prove to be ‘benign’ in nature and may not cause many issues but any Ki-67 below 3% is a formal cancer grade of a Neuroendocrine Neoplasm. I accept that it’s currently difficult to work out which cases will turn more aggressive and when, thus why surveillance and follow-up are really important and also why patients should be seeing doctors who understand NETs. More sensitive molecular markers assisting doctors in decision-making will be welcome at some point in the future. Worth also noting that many slow-growing and indolent tumours can still often produce troublesome NET syndromes.
I’ve even heard one patient story where it was claimed a doctor called a metastatic NET case benign! Any standard cancer nomenclature definition of ‘benign’ on any respectable cancer site will include the statement that they do not spread to other parts of the body. The NET patient world is full of slow-growing Grade 1 Stage 4 patients. By dint of the stage number, they’re all malignant.
Read more detail in the articles below as these issues are inextricably linked.
I’m sure there are scenarios in all cancers where tumours can be benign and will never harm the person but if a doctor says you have a Neuroendocrine Tumour and not to worry because it’s benign, ask questions. Start with “how do you know it will never turn malignant” and “what will be done going forward to check”. This is particularly important in cases of Small Intestine and Pancreatic NETs where there is a greater risk of spread than other NET types.
I also acknowledge that many slow-growing localised NETs have much less prevalence for spread, i.e. Appendiceal NET, Rectal NET, and to a certain extent atypical Lung NET. Epidemiological data confirm these have less risk of spreading and there are curative scenarios in completed removing the localised primary with the right margins.
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- Spotlight on Thymic Neuroendocrine Neoplasms (Thymic NENs)
Disclaimer:The information in this Spotlight is for general education and awareness. It does not replace personalised medical advice, diagnosis, or treatment. Thymic Neuroendocrine Neoplasms (NENs) are complex and highly variable, and individual cases may differ significantly from the patterns described here. Always discuss your own situation, test results, and treatment options with your specialist team,… Read more: Spotlight on Thymic Neuroendocrine Neoplasms (Thymic NENs) - An unmissable update from Ronny Allan covering April 2026
A monthly update not to miss……..Summary of April 2026 on RonnyAllan.NET I think the main story of April is similar to March which was a strong blog performance. Some of March was so popular that it has rolled into April and I have tried to beat those figures but failed due to external pressures. Nonetheless, the… Read more: An unmissable update from Ronny Allan covering April 2026 - Spotlight on Small intestine Neuroendocrine Neoplasms (siNENs)
DisclaimerThis Spotlight is for general education and reassurance only. It cannot replace personalised advice from your own medical team, who understand your individual history, imaging, pathology, and treatment needs. Neuroendocrine tumours vary widely in behaviour, presentation, and management, and guidance may evolve as new evidence emerges. If you have questions about your diagnosis, symptoms, or… Read more: Spotlight on Small intestine Neuroendocrine Neoplasms (siNENs) - A Spotlight on Pancreatic Neuroendocrine Neoplasms
DisclaimerThe information in this Spotlight is for general education only. It cannot replace advice from your own medical team, who know your individual situation, test results, and treatment options. Neuroendocrine Neoplasms and related conditions are complex and research is evolving; guidance, classifications, and statistics may change over time. Always discuss any questions or concerns with… Read more: A Spotlight on Pancreatic Neuroendocrine Neoplasms - Neuroendocrine Cancer in UK – a growing crisis?
I was delighted to read about the efforts of Dr Arthur Scott, a Member of the UK Parliament (MP). He is a great advocate for cancer patients and recently introduced a rare cancer bill in the UK Parliament which will hopefully make a difference. The content was very interesting and I was drawn to several… Read more: Neuroendocrine Cancer in UK – a growing crisis? - Bone Metastases in Well‑Differentiated NETs – Part 2 – Treatment
DisclaimerThis information is for education and reassurance only.It is not a substitute for personalised medical advice, diagnosis, or treatment. Bone metastases in neuroendocrine tumours (NETs) vary widely in behaviour, appearance, and clinical significance. Decisions about systemic therapy, radiotherapy, ablation, bone‑targeted agents, surgery, or monitoring must be made by your own specialist NET team, who understand… Read more: Bone Metastases in Well‑Differentiated NETs – Part 2 – Treatment - Neuroendocrine Tumours – Vitamin B3 (Niacin)
Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely. If you have concerns… Read more: Neuroendocrine Tumours – Vitamin B3 (Niacin) - March 2026 Newsletter from Ronny Allan
Here is my monthly summary of March 2026 on RonnyAllan.NET This has been a very good month but to be honest, I had more time at home and on my computer, due to illness. OK I was not that ill that I could not tap away at a keyboard! However, it was pretty erratic access. I… Read more: March 2026 Newsletter from Ronny Allan - Understanding Differentiation, Ki‑67, Mitotic Count, Hotspots, Pathology Workflow, and Primary–Metastasis Heterogeneity in Neuroendocrine Neoplasms (NENs)
Before you read this… This article discusses pathology concepts such as Ki-67, grading, heterogeneity, and biopsy findings in neuroendocrine tumours (NETs). It is provided for educational purposes only and does not interpret any individual pathology report or scan result. Ki-67 values, tumour grade, and sampling limitations can vary between different biopsies and over time. Their… Read more: Understanding Differentiation, Ki‑67, Mitotic Count, Hotspots, Pathology Workflow, and Primary–Metastasis Heterogeneity in Neuroendocrine Neoplasms (NENs) - Why liver transplant is back in the NET conversation
Before you read this… This article is provided to support understanding of a complex and evolving topic. It explains how liver transplant is being explored in a very small number of NET patients, but it is not suggesting that this treatment is suitable for you or anyone else. Every NET case is unique. Only your… Read more: Why liver transplant is back in the NET conversation - This too shall pass
If you’ve heard that phrase before, you’re not alone. The phrase is rooted in older Persian and Buddhist teachings, and widely accepted as a testament to the impermanence of all things. Many famous people have used this phrase including Abraham Lincoln, Tom Hanks, Robert De Niro and King Solomon. I’ve also seen various cancer bloggers… Read more: This too shall pass - HRT and Neuroendocrine Tumours (NETs): What Patients Need to Know
Before you read this… This article discusses hormone replacement therapy (HRT) in the context of general health, menopause, and neuroendocrine tumours (NETs). It is provided for educational purposes only and does not recommend starting, stopping, or changing any form of HRT. The suitability of HRT depends on many individual factors, including tumour type, grade, hormone… Read more: HRT and Neuroendocrine Tumours (NETs): What Patients Need to Know - Blood Clot risks in Neuroendocrine Neoplasms (NENs)
I have a personal interest in this subject because I had pulmonary emboli (PE) diagnosed in January 2011 around 6 weeks after I had major surgery. I got a phone call from the hospital to go down that day and meet with a nurse who would teach me to self inject ‘Clexane'(Enoxaparin) and then take… Read more: Blood Clot risks in Neuroendocrine Neoplasms (NENs) - Neuroendocrine Tumours (NETs) – Vitamin D (Cholecalciferol / Ergocalciferol)
Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely.If you have concerns about… Read more: Neuroendocrine Tumours (NETs) – Vitamin D (Cholecalciferol / Ergocalciferol)
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I was incensed when a locum that I was seeing at our local hospital about an unrelated issue questioned whether or not I actually had cancer! Yes, my NETS is cancer! Why in the world would I claim to have cancer if I didn’t?
I feel this is the MOST important issue that I’ve encountered, my father encountered and has left some young people in the serious position of “inoperable” when their “mets” were discovered after an initial diagnosis of benign. I myself could have easily fallen into this crack in the sidewalk when my local GP and surgeon said first tumor was “benign” . . . But my father’s “benign” tumor came back and killed him when he had mets to his bones. FOLLOW-UP IS EXTREMELY IMPORTANT . . . The reason I’m alive 11 years after first SDHB Deficient tumor diagnosis.