Translate
Subscribe to Blog via Email
Ronny Allan
Now the dust has settled on the death and funeral of Neuroendocrine Cancer patient Aretha Franklin, the community needs to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and including doctors.
About 95% of the articles I read about Aretha Franklin stated she had Pancreatic Cancer. Only a few quoted her physician who clumsily said “Pancreatic Cancer of the Neuroendocrine Type”. Her death certificate quoted “Pancreatic Neuroendocrine Cancer”. Despite this, the media outlet that published her death certificate still led the article with the headline “Pancreatic Cancer”. Exactly the same thing happened with Steve Jobs and a few others. And that’s only the ones we know about – how many other pe0ple are being labelled and documented with the wrong cancer type?
I cannot read the minds of the healthcare professionals and media when they compile their press releases and articles but I’m fairly certain they simply do not understand that Neuroendocrine Cancer is cancer within its own right and is not a type of another cancer. They simply do not understand the term ‘Neuroendocrine’ and they think the readership won’t either, and so it’s probably easer just to leave that bit out. The result is that a person has, or dies with, is labelled with the wrong cancer type, which is then published and embedded into the annals of the internet and spreads like wildfire (fake news), and Neuroendocrine Cancer is once again robbed of much-needed awareness. Our community needs to start focusing more on these types of awareness issues rather than continually flaunting dehumanizing pictures of black and white striped animals.
I’m even starting to think that the well-known term used in Neuroendocrine Cancer circles, ‘Pancreatic Neuroendocrine Tumor’ or pNET for short, is actually working against us because of the inclusion of the organ as the first word of the term. Going forward, I will be using Neuroendocrine Cancer with a pancreatic primary, etc.
Neuroendocrine Cancer is NOT a type of another cancer PERIOD!
You may also like to read the following:
The Human Anatomy of Neuroendocrine Cancer – Ronny Allan – Living with Neuroendocrine Cancer
Aretha Franklin 1942-2018: Neuroendocrine Cancer – Ronny Allan – Living with Neuroendocrine Cancer
Carcinoid vs Neuroendocrine – Ronny Allan – Living with Neuroendocrine Cancer
Neuroendocrine Cancer Survivor Wilko Johnson – from dying to living. Rock and Roll! – Ronny Allan – Living with Neuroendocrine Cancer
Repeat after me. Maria Menounos has Neuroendocrine Cancer
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

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

Exercise is Medicine
Exercise is medicine. Clearly I need to be careful with that statement given my aversion for cancer myths. However, those who know me will totally

Jimmy Buffett 1946-2023 – Neuroendocrine Carcinoma (Merkel Cell Carcinoma)
US singer-songwriter Jimmy Buffett, best known for his 1970’s hit Margaritaville, has died aged 76. “Jimmy passed away peacefully on the night of September 1

Passive patient or active advocate?
I’ve been researching Neuroendocrine Cancer for some time now. Why do I do this? Whilst I have a great medical team, I’d also like to

Childhood Cancer Awareness Month – Neuroendocrine Cancer (featuring Elizabeth)
September is Childhood Cancer Awareness Month! The newspapers and social media will no doubt be featuring many childhood cancer articles. You may not see one

A review of August 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer
On my website RonnyAllan.NET, August was as quiet as July but in the second half, I accelerated publication of some posts. The month was also
A cup of tea
I would also mention those who contributed to my “Tea Fund” which resides on PayPal. You don’t need a PayPal account as you can select a card but don’t forget to select the number of units first (i.e. 1 = £4, 2 = £8, 3 = £12, and so on), plus further on, tick a button to NOT create a PayPal account if you don’t need one. Clearly, if you have a PayPal account, the process is much simpler
Through your generosity, I am able to keep my sites running and provide various services for you. I have some ideas for 2023 but they are not detailed enough to make announcements yet.
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!)
the look people give me when I say Neuroendocrine Cancer… it’s like a deer in the headlights… even my “now” oncologist wasn’t sure… thank heavens I see a specialist… though I feel the oncologist is just a cheerleader
I’m new to the neuroendocrine world. My carcinoid was discovered incidentally a few years ago, but have not followed up after it was removed. I’m trying to learn more about it now. I was confused by your article. If it’s not a type of cancer, what is it? Can you help me understand the distinction, please?
Not saying it’s not a type of cancer, I’m saying it’s not a type of another cancer. e.g. it’s not “Pancreatic Cancer”, it’s a “Neuroendocrine Cancer” of pancreatic origin.
Oh, ok. After I posted my question, I read more articles of yours and it is making a lot more sense to me now. Probably shoulda done that before I commented, right?
It’s fine, I always review the wording to make it’s not misleading
Learning more from Ronny Allan than from my oncologist!
I had an arthritis review yesterday, and I said I had NET Cancer, they had never heard of it. I told them to go and look it up, in a nice way of course. It is amazing how many in the medical profession that we deal with on a daily basis have never heard of it, still…
NET Cancer is probably something we should avoid saying, not just because of the grammar (Neuroendocrine Tumour Cancer!). The correct medical term would be Neuroendocrine Tumour in your case. NET Cancer was invented by INCA (NET Cancer Day) back in 2010 and it needs a root and branch overhaul. Not sure what I should do about my “NET Cancer Blog” though – although I’m slowly rebranding!
I gave it it’s full title first, but within the community I think it will be very hard to loose the acronym. There is still a lot of work and education to be done, and your doing a great job👍🏻
NET is fine, ‘NET Cancer’ is a fudge really
I’ve had a dr to say NET to say it’s not cancer… it was compared to Fatty Liver Tumors.
wow not seen that before!
Very well said, Ronny! I am going to share this with my Facebook readers. We need to keep battering people with this information until it finally sinks in!
Timely and a powerful tool that I’m using to help educate some of my family and friends. My personal goal is awareness (thanks for your help) and money for targeted research.
Very good points you make Ronny Allen