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. 

And in USA …

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

Let’s stop perpetuating the myth

Thanks for reading
Ronny