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 blog Neuroendocrine Cancer – not as rare as you think. Better diagnostic technology, greater awareness and better recording of the correct disease in national cancer registries.
Last year, the new figures for Public Health England (covering ~90% of UK), indicate there are now 4000 diagnoses of NETs every year, i.e. more people than ever are being diagnosed, an incidence rate of 8/100,000. 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 (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, I’m quoting some calculations from Nikie, the NPF’s NET Nurse:
4000 newly diagnosed NETs a year in England alone
= 333 a month
= 77 a week
= 11 a day
= 1 every 2.18 hrs
The UK is not alone in recording major increases taking the incidence and prevalence beyond the threshold of rare disease categorisation. Only a month ago, 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 (5 every 2 hours).
Please let’s stop perpetuating the myth.
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