🔵 The Invisible Neuroendocrine Tumour Population

🔵 The Invisible Neuroendocrine Tumour Population

 Introduction For years, patients, clinicians, and researchers have suspected that the true number of people living with neuroendocrine tumours (NETs) is far higher than official statistics suggest. Registry data only captures those who are diagnosed — but what about those who never receive a diagnosis at all? Autopsy studies, historical pathology series, and institutional observations provide a rare window into this invisible NET population. When viewed together, they reveal a consistent global pattern: NETs and related neuroendocrine tumours are under‑diagnosed, under‑recognised, and often present for years before anyone realises what they are. This refreshed article integrates 13 autopsy‑based datasets, two key epidemiologic messages, and updated…
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Diagnosed with Neuroendocrine Tumours: Hurry up and wait

Diagnosed with Neuroendocrine Tumours: Hurry up and wait

When I was diagnosed with metastatic well differentiated Neuroendocrine Cancer on 26 July 2010, I just wanted them to hurry up and fix my body so I could get back to normal get back to work. My expectations of speed turned out to be wildly inaccurate and in hindsight, it's because I was wildly naïve. With Neuroendocrine Cancer, particularly well-differentiated, low or medium grade tumours, it sometimes doesn't work as fast as you would think and there are very good reasons for that. The complexity of the condition needs some consideration as the physicians work up a treatment plan, when…
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The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2026 classification changes)

The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2026 classification changes)

Updated 1 August 2026 This section of my website has been published and regularly updated since 2015 but the most recent updates to the World Health Organisation (WHO) Classifications for Digestive and Thoracic Systems are about to be published.  You may see these important publications called 'Blue Books'. Digestive Systems  The main changes worth mentioning here is the addition of two new subtypes of Gastric NETs -  Types IV and V, a genetic mutation and PPI related respectively.   A larger update will be added when the publication is available online.   Thoracic Systems (Lung/Thymus)  The "multidisciplinary expert group" that drafted these…
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