22Jan 2023 by Ronny Allan No Comments

Translate

Ronny Allan

Award winning Neuroendocrine Cancer Patient Advocate. Diagnosed with Metastatic Neuroendocrine Cancer in 2010.

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.

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.

Disclaimer

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. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional as they are not members of the private group or followers of my sites in any official capacity. Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.