Neuroendocrine tumors are uncommon but definitely not rare

Neuroendocrine tumors are uncommon but definitely not rare

Awareness, Patient Advocacy
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…
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The Invisibility of Appendiceal and Colorectal NETs – do the math

The Invisibility of Appendiceal and Colorectal NETs – do the math

Patient Advocacy
Do the math not the myth In addition to my mountain of evidence against the so-called rarity of Neuroendocrine Neoplasms, a new study from US indicates that many NETs are hidden among colorectal cancer cases in cancer registries. The study reported extraordinary figures of NET cases found when analysing the data.  For years, doctors have been warning about the increasing incidence of colorectal cancer amongst younger people. For that reason, the American Cancer Society recommended people to start screening at a younger age (45 years instead of 50 years) in 2018. This would affect 22 million Americans who now are recommended screening. Colorectal covers the large intestine including the sigmoid colon and rectal cases.   You can read this article from the National Institute of Health covering the issue in US. …
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The Invisible NET Patient Population 

The Invisible NET Patient Population 

Awareness
OPINIONI found some of the quotes from the recent NET SEER Database study (Dasari et al) very interesting.  The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program is a comprehensive source of population-based information initiated in 1973 that is updated annually. Although the study is US-based, it represents the largest study of Neuroendocrine Neoplasms (NENs) ever recorded and is therefore a good guide to what might be found beyond USA. Almost 7 times the rate recorded in the 1970s. If you want to understand the factors behind this massive increase, I covered this extensively in my post "Neuroendocrine Neoplasms – not as rare as you think". However, most things I read indicate the figures were understated (words used by several NET specialists.  Despite this date now being 8 years…
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One every 2 hours

One every 2 hours

Awareness
  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…
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Neuroendocrine Neoplasms – not as rare as you think

Neuroendocrine Neoplasms – not as rare as you think

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy
UPDATE AS AT 21 JAN 2023 - a leading US cancer organisation accepts that NETs are not rareI don't like to gloat, but this post is heading for its 8th birthday.   UK and Australian figures recently confirmed that Neuroendocrine Cancer is the 10th and 7th most common cancer type.  Several NET specialists in USA have been more vocal (see some graphic quotes below) than the cancer organsiations (including the ones who represent us) and disappointingly "carcinoid" use is still rife in that part of the world.  Let's hope they will now get on with moving to the new paradigm I've been suggesting for a long time.Read more in the "Meanwhile in USA" section.BackgroundAlthough initially considered rare tumours up until 10 years ago, the most recent data indicates the incidence of…
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