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Ronny Allan
This is a great catchphrase from Neuroendocrine Cancer UK. It is partly based on the realisation that Neuroendocrine Cancer is no longer rare. OK, that has been the case for some years but the recent data from NHS England cements this patently obvious truth. In England, it is now the 10th most prevalent cancer with a continually rising incidence – that has already seen 371% increase since 1995. Neuroendocrine Cancer UK is possibly the most progressive organisation within the INCA national collective, although I am seeing glimmers of change in some others. Unfortunately, many North American organizations/advocates appear to be going backward on this issue which I find bizarre. Certain European countries are also lagging.
The phrase “Ask More and “Assume Less” is a great punchline and fits many of the experiences we hear about on a daily basis. I’m a big believer in “asking more” as many of you will know. My second most-read post is the comprehensive 10 Questions which has been read almost 50,000 times (as of Nov 2022).
Assume less is also very important and applies to both patients and healthcare professionals. It must not be assumed that all Neuroendocrine Tumours (NETs) are benign and don’t need attention and patients must not assume that the doctor they initially see knows about NETs – thus why seeing a specialist NET team is important before any big decisions are made. The most comprehensive list of NET Specialists can be found by clicking here.
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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.
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In what way are the US and Canadian organizations going backwards?
On twitter yesterday, all I saw was a sea of black-and-white striped animals. It is the most ridiculous concept, and it does not advance awareness of Neuroendocrine Neoplasms one inch. Additionally, too much use of the term “carcinoid” when it has 99% been phased out of the nomenclature. Doctors, scientists, and epidemiologists are lining up to say it is no longer rare and negates the need for posting party pictures (yes it felt like a party) of black and white striped animals particularly by people who, in one sentence or quote they say it is not rare and then in another they contradict themselves by using this out of date, flawed and irrelevant. I guess some people think that is what patients expect to see forgetting that the day is for awareness, i.e. it’s about future patients in some respect. Many people do not like the zebra term, they find it condescending to be called one, with one patient describing it as juvenile behaviour by those doing the calling. Some patients find it dehumanising. Not only that it is taken out of context. For example, when someone says “my zebra husband”. they are in effect saying “my disease husband” or when say “Morning zebras”, they are saying “morning diseases”. All of this total rubbish is banned on my sites, many other organisations have vastly reduced this sort of activity (UK and Australia are two good examples only lapsing on 10th Nov time to meet their antiquated and flawed INCA membership requirements). North America is still in the 1940s.