Incidence Archives

17 Apr 2026

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Neuroendocrine Cancer in UK – a growing crisis?

Patient AdvocacyIncidence, NET Centre of Excellence, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Prevalence

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 parts of his submission. "The label of “rare” can often be a dangerous misnomer in our healthcare system" Firstly, the description of 'rare' as a 'dangerous misnomer' when applied to a cancer which is now more prevalent than better known cancers such as Stomach and…

07 Mar 2025

By Ronny Allan

5 Comments

Neuroendocrine Cancer in England: One every 90 minutes

AwarenessIncidence, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), SEER

I've made no secret of the fact that I don't believe Neuroendocrine Cancer is rare and you can read why in some detail in my article Neuroendocrine Cancer - not as rare as you think. Better diagnostic technology, greater awareness and better recording of the correct disease in national cancer registries. The latest figures for Public Health England (covering ~90% of UK), indicate there are now approximately 6000 diagnoses of NETs every year, i.e. more people than ever are being diagnosed, It is calculated from an incidence rate of approximately 9/100,000. This means NEN can now no longer be defined…

27 Nov 2024

By Ronny Allan

20 Comments

The Invisible NET Patient Population

AwarenessCancer registries, Carcinoid tumour, Epidemiology, High grade neuroendocrine neoplasm (NEN), Incidence, Intermediate grade NET, Low Grade NETs, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pheochromocytoma, Prevalence

First published August 2017 but updated several times UPDATED TO INCUDE PUBLISHED US FIGURES IN 2025 OPINION I found some of the quotes from the recent NET SEER Database study (Dasari et al) very interesting. The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program is a comprehensive source of population-based information initiated in 1973 that is updated annually. Although the study is US-based, it represents the largest study of Neuroendocrine Neoplasms (NENs) ever recorded and is therefore a good guide to what might be found beyond USA. Almost 7 times the rate recorded in the 1970s. If you…

18 May 2024

By Ronny Allan

30 Comments

Neuroendocrine Neoplasms – not as rare as you think

Awareness, Living with Neuroendocrine Cancer, Patient AdvocacyHodgkin lymphoma, Incidence, International Classification of Diseases (ICD), International Classification of Diseases for Oncology (ICD-O), Lung NETs, Myeloma, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic NET (PanNET), Prevalence, Quality of LIfe (QoL), Rectal NET, SEER, Small cell lung cancer (SCLC), Small intestine NET (SI NET), Testicular cancer, UKINETS

UPDATE AS AT 5th OCTOBER 2025 -USA - Prevalence of Neuroendocrine Neoplasms breaches the Orphan Disease threshold for the first time (officially) In this cross-sectional study evaluating 145,477 NEN cases in the US, age-adjusted incidence rates increased 5.2-fold between 1975 and 2021, with an annual percentage change of 3% between 2000 and 2020, and the 20-year limited duration prevalence projected in the US population on January 1, 2021, was 243 896. Survival for all NENs improved, including for patients with distant-stage gastrointestinal and pancreatic NENs. And even this figure is understated as they have excluded some Neuroendocrine Carcinomas from the list…

22 Jan 2023

By Ronny Allan

2 Comments

Neuroendocrine tumors are uncommon but definitely not rare

Awareness, Patient AdvocacyEpidemiology, Incidence, Neuroendocrine cancer, Prevalence

USA finally commits UK and Australian figures recently confirmed that Neuroendocrine Cancer is the 10th and 7th most common cancer type. It was great to see this post from the American Society of Clinical Oncology, albeit the USA is joining later than many other countries confirming the worst-kept secret ever - NETs are not rare. That said, several NET specialists in the USA have been more vocal about this (one example is below), much more so than the cancer organisations (including the ones who represent us) who disappointingly market the rare theme along with the antiquated use of words such…

04 Jan 2021

By Ronny Allan

0 Comments

The Invisibility of Appendiceal and Colorectal NETs – do the math

Patient AdvocacyBowel cancer, Carcinoid, Colon cancer, Colon NET, Colorectal cancer, Epidemiology, Incidence, Neuroendocrine tumour (NET), Rectal cancer, Rectal NET

Do the math not the myth In addition to my mountain of evidence against the so-called rarity of Neuroendocrine Neoplasms, a new study from US indicates that many NETs are hidden among colorectal cancer cases in cancer registries. The study reported extraordinary figures of NET cases found when analysing the data. For years, doctors have been warning about the increasing incidence of colorectal cancer amongst younger people. For that reason, the American Cancer Society recommended people to start screening at a younger age (45 years instead of 50 years) in 2018. This would affect 22 million Americans who now are…

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