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.
Watch the short video
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.
Top 10 Posts & Pages in the last 48 hours (auto updates) (Click the titles to read them)
Thanks for reading.
I’m also active on Facebook. Like my page for even more news. Help me build up my new site here – click here and ‘Like’
Sign up for my newsletters – Click Here
My Diagnosis and Treatment History
Check out my online presentations
Check out my WEGO Health Awards
Like my new awareness page – click here or on the photo. (Like rather than follow please!)
Check out my Glossary of Terms – click here
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
Pancreatic NET with carcinoid syndrome – not as common as you think
Why do I need to write about this? I’ve been watching confusion surrounding symptomatic pancreatic NETs for years and it never ceases to amaze me
A spotlight on Appendiceal Neuroendocrine Neoplasms
What are Appendiceal NENs Appendiceal Neuroendocrine Neoplams (NENs) account for approximately 60% of all primary cancers in the appendix. The other main cancer types found
Nuclidium wins award to study NET radiopharmaceutical – Phase 1 Clinical Trial of TraceNET (TM)
What is TraceNETTM TraceNETTM is a a novel copper-based ‘radiodiagnostic’ for detecting neuroendocrine tumours (NET). The PET imaging agent candidate is the diagnostic component of
Experimental drug for Gastric NET – Netazepide
Gastric NETs When I wrote my post entitled “Spotlight on Gastric Neuroendocrine Neoplasms“, I explained what these were with some emphasis on the association with
A Newsletter from RonnyAllan.NET – 13th March 2023
Newsletter from Ronny Allan – 13th March 2023 Welcome to my new template newsletter compiled using WordPress (my blog app). This is the 2nd in
Fructose intolerance – the NET Effect
Background When I cast my mind back to my very first surgery, I remember all sorts of ‘plumbing’ issues but was told it would take
A tribute to the life and legacy of Miranda Filmer
It’s true to say that Neuroendocrine Cancer is an older person’s disease, the epidemiology is clear on that. But I do see many young people
Treatment for Neuroendocrine Cancer: Beware of the alternatives
The Alternative Hype Cancer Research UK warns of the risks in Alternative Therapies, and I pay great attention to what these guys say. I know
RonnyAllan.NET – Summary of February 2023 – Ronny Allan – Living with Neuroendocrine Cancer
Summary Another great start to 2023 and I thank those who continue to support my social media and this blog. I’m keen to hear any
2 thoughts on “Ask More, Assume Less”
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.