Buy me a cup of tea or two? Change the number below to increment. i.e insert 2 = £8, 3 = £12, etc
Overheads to run this site, e.g. software packages, domain registration fees, software tools, misc items. Donate £4 or more so I have the fuel to keep on providing great content!
£4.00
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 as a rare cancer. The reference cited below also stated that ‘Multiple studies show that NEN incidence is rising internationally’ and ‘The cause (of the increase) is yet unknown but increased detection seems likely, as well as a possible real increased incidence. A comprehensive Swedish autopsy study comparing post-mortem to real-time diagnosis over a time period showed a high number of undiagnosed NEN in the small bowel’.
The Swedish study is important and supports several quotes in my own research published here – “The Invisible NET Patient Population”
To put this diagnostic data into perspective:
6000 newly diagnosed NETs a year in England alone
~ 16 a day
~ 1 every 1.5 hrs
You can read the Public Health England (PHE) paper below in References.
These figures are understated though as Large cell neuroendocrine and small cell carcinomas of the lung were excluded with the explanation “as the high incidence in this organ would skew the results”. I don’t understand why they have been excluded because they are either Neuroendocrine Neoplasms (NENs) or they are not. If they are, they should be included.
The UK is not alone in recording major increases taking the incidence and prevalence beyond the threshold of rare disease categorisation. The very latest SEER figures for USA confirmed the disease is no longer rare in 2017, particularly as the annual incidence rate is now 23,000 in that country (circa 5 every 2 hours). And the authors stated that was most likely understated.
And many cancer organisations in US are joining in – this quote from American Society of Clinical Oncologists.
And this quote is direct from X (formerly known as twitter) and was made by a top US NET specialist at the time he was President of NANETS
Thanks for reading
Ronny
Incidence and survival of neuroendocrine neoplasia in England 1995–2018: A retrospective, population-based study. White, Benjamin E. et al. The Lancet Regional Health – Europe, Volume 23, 100510
(click here to read).
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Some content may be generated by AI which can sometimes be misinterpreted. Please check any references attached.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
Thanks for reading.
Blog Facebook. Like this page please.
Personal Facebook. Like this page please.
Awareness Facebook Like this page please.
Follow me on X (formerly twitter)
Check out my online presentations
Check out my WEGO Health Awards
Vitamin D deficiency is demonstrably more common in people with neuroendocrine tumours (NETs) — but that does not automatically mean your deficiency is caused by
Words are very important to cancer patients, some people hang their hats on them and put their feet up, and some people google them until
Overview Many thanks for the support in January and February 2026. This is a double month newsletter due to my 27 day holiday! 2026 Blog
Vitamin B12 deficiency is demonstrably more common in people with neuroendocrine tumours (NETs) – what that means is there is a chance your deficiency as
When I was a young lad, I didn’t seem to have a fear of heights, not that I got many chances to test it but
When I was diagnosed with metastatic Neuroendocrine Cancer in 2010, there’s a lot of milestones I doubted I would reach. One is today and I
A Phase 2/3, Multicenter, Randomized Open-Label Study of Zanzalintinib vs Everolimus in Participants With Previously Treated, Unresectable, Locally Advanced or Metastatic Neuroendocrine Tumors. The primary purpose
Long-axial field-of-view (LAFOV) systems have changed the field of molecular imaging. Since their introduction, many PET centres have installed these next-generation digital systems to provide
Crinetics Announces First Patient Dosed in Phase 1/2 Trial Evaluating CRN09682 for the Treatment of Neuroendocrine Tumours and Other Somatostatin Receptor 2-Expressing Tumours Read the
Buy me a cup of tea or two? Change the number below to increment. i.e insert 2 = £8, 3 = £12, etc
Overheads to run this site, e.g. software packages, domain registration fees, software tools, misc items. Donate £4 or more so I have the fuel to keep on providing great content!
£4.00
Subscribe to get the latest posts sent to your email.
