Neuroendocrine tumors are uncommon but definitely not rare

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 as “carcinoid” which seems rifer in USA than many other parts of the world.  USA is normally at the forefront of progress so let’s hope they will now get on with moving to the new paradigm I and many others have been suggesting for a long time.

The ASCO Post

One of the most astonishing quotes from this post is that the false perception that NETs is a rare cancer, has held back proper clinical research. ““As a result of perceived disease rarity and nonmalignant clinical course, NENs have not been subjected to rigorous clinical research, as compared with other similar tumor types”. 

This comes a couple of weeks after I publicly stated that if primary and secondary care facilities were told NETs are not rare, it might be something doctors would consider more rather than dismiss it as it’s very unlikely.  I repeat something I have said many times.  The use of ‘rare’ is holding back our awareness and has resulted in cult thinking amongst certain advocate organisations, and I’m disappointed to say that some doctors and scientific organisations also fall into this trap.  Now it seems it is also holding back rigorous clinical research.  Even just for this reason, everyone now has to stop calling it rare, stop using the carcinoid word, and stop using ridiculous animal icons.  The cult must be disbanded.

Read more by clicking here.

Epidemiology of Neuroendocrine Neoplasms in the US

USA’s latest statistics as of 2020 confirms the prevalence of Neuroendocrine Neoplasms has increased by 50% over 20 years

Hot off the press, detailed analysis to follow. Latest US statistics indicate almost a quarter of a million people are living with Neuroendocrine Neoplasms (NEN) using a 20 year period 2000-2020 (complicated calculation). Previous figure was 171,321, suggesting a 50% increased prevalence.  These results suggest that NENs are increasing in incidence and prevalence; survival of patients with distant-stage disease has improved, likely reflecting improvements in therapies.  The study indicates a limitation that is well known ……. NETs may be under-reported thus leading to underestimations of their epidemiology i.e. accurate figures are probably higher.  Repeat after me – NENs are not rare.

And as this graph shows, NENs are the fastest growing cancer

My original blog is approaching 8 years old

Neuroendocrine Neoplasms – not as rare as you think – (ronnyallan.net)

Dr Thor Halfdanarson while attending the European NET Society conference.

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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.

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Ronny

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