I first published this blog post after the dust settled on the media coverage of the death and funeral of Neuroendocrine Cancer patient Aretha Franklin. I was saddened by the death of this icon of the music industry but more determined to speak out about the need for our community to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and incredibly, 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 people 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, has been labelled with the wrong cancer type, which is then published and embedded into the annals of the internet and spreads like wildfire (and is technically fake news). Neuroendocrine Cancer is once again robbed of much-needed awareness. Our community really needs to start focusing more on these types of awareness issues rather than continually flaunting dehumanizing and cultish pictures of black and white striped animals as their main or only source of imagination.
I’m even starting to think that the well-known term used in Neuroendocrine Cancer circles, ‘Pancreatic Neuroendocrine Tumor’ or pNET or Pan NET 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!
Edit: Then in 2023, Maria Menounos, a US celebrity, goes public with “pancreatic cancer”. We need to keep on keeping on about this!
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
Repeat after me. Maria Menounos has Neuroendocrine Cancer
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My 15 year old daughter was diagnosed with neuroendocrine tumors when they removed her appendix my ex husband will still not believe that she has cancer how do I prove to him that she does he expects a big bold she has cancer on her discharge forms but it says nuroendocrine tumor he’s doing both me and my daughters heads in.
so sorry to hear your daughter has this diagnosis. Appendiceal tumours can be found in young people following the removal of the appendix and if small and localised, a surgeon can remove with curative intent. If you are on Facebook, you can message me here for further info. m.me/ronnyallanblog
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