Translate
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.
Watch the short video
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.
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.
Personal Facebook. Like this page please.
Blog Facebook. Like this page please.
Awareness Facebook Like this page please.
Sign up for my newsletters – Click Here
My Diagnosis and Treatment History
Check out my online presentations
Check out my WEGO Health Awards
Check out my Glossary of Terms – click here
Please Share this post for Neuroendocrine Cancer awareness and to help another patient

Neuroendocrine Cancer Clinical Trial – Lutetium-177Lu (Satoreotide)
What is Satoreotide? It’s an agonist treatment. i.e. a ‘next generation’ radiologand for Peptide receptor radionuclide therapy (PRRT) or more specifically the radiopharmaceutical that binds

A review of September 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer
On my website RonnyAllan.NET, September was an interesting month because I had pushed out some blogs before I went on a planned overseas holiday from

Never mind the Bollocks – here’s the cancer
I don’t tend to share some very personal stuff, but this is on the boundary of that rule and there are some important messages to

First and only FDA-cleared, fully automated chromogranin A assay
There has been controversy about the utility of Chromogranin A for many years now. Specialists have been critical about its use but to be fair

Neuroendocrine Cancer: Question, Clarify, Confirm
One of the many observations I make in my private Neuroendocrine Cancer Facebook group is the misunderstandings caused by the use of non-standard terminology combined

Clinical Trial – Lutathera NETTER-2 Important Update
UPDATE – Sep 25th, 2023 – Novartis radioligand therapy Lutathera® demonstrated statistically significant and clinically meaningful progression-free survival in first line advanced gastroenteropancreatic neuroendocrine tumors

Lanreotide: Ipsen injection devices vs generic injection devices
Whenever I get a chance to talk to a pharma involved in somatostatin analogue injection devices, I tell them one very important thing …… “To

Cancer doesn’t take holidays (but I do)
Glen Etive Scotland in 2018 After diagnosis in July 2010, with the exception of a planned holiday to Turkey prior to my ‘big surgery’, holidays

Update from Ronny Allan: No evidence of progressive disease at any site
Update August 2023. Latest CT surveillance scan reports “No evidence of progressive disease at any site”. Very pleased! With incurable but treatable cancers such as
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.