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Ronny Allan
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. 
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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What is Chromogranin A? Chromogranin A (CgA) is an acidic protein released along with catecholamines from chromaffin cells and nerve terminals. This statement alone might
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What are Rectal NENs Rectal Neuroendocrine Neoplasms (NENs) (rNENs) account for approximately 1-2% of all primary cancers in the rectum. The other main cancer types
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Background. It’s important to note that not every type of Neuroendocrine Neoplasm will get the same tests due to the heterogenous nature of this cancer type.
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This screenshot is from every single post on my website and depending on which machine you are using, it will either be top right of the post or at the bottom (my posts are often long, so scroll down!)
Shopping on line for NET T shirts, I was disturbed to see many shirts referring to NETs as a RARE disease.
yes, unfortunately many advocate organisations and patients remain deluded despite the evidence