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 4800 diagnoses of NETs every year, i.e. more people than ever are being diagnosed, It is calculated from an incidence rate of 9/100,000 (using the 2011 census for England of 53,000,000) The new figures do not include Lung Neuroendocrine Carcinomas (LCNEC and SCLC) – so it is understated. This would appear to debunk the myth that the condition is rare given that the incidence rate has now gone beyond the threshold to be considered rare in Europe (5/100,000).
You can read the Public Health England (PHE) paper by visiting the NET Patient Foundation site here.
To put this diagnostic data into perspective:
4800 newly diagnosed NETs a year in England alone
= 400 a month
= 92 a week
= 13 a day
= 1 every 1.84 hrs
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).
Please let’s stop perpetuating the myth.
Thanks for reading