Subscribe to Blog via Email
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:
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.
Sign up for my newsletters – Click Here
Check out my Glossary of Terms – click here
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for Digestive Neuroendocrine Carcinoma
This ENETS guidance paper, developed by a multidisciplinary working group, provides up-to-date and practical advice on the diagnosis and management of digestive neuroendocrine carcinoma, based
European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for gastric neuroendocrine tumours (NETs) G1–G3
The ENETS 2023 guideline for gNETs are combined with the guidelines for Duodenal NET (dNET) due to their close relationship in anatomical terms. Gastric neuroendocrine
European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for Duodenal neuroendocrine tumours (NETs) G1–G3
The ENETS 2023 guideline for dNETs are combined with the guidelines for Gastric NET (gNET) due to their close relationship in anatomical terms. But there
D Day I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea
Another episode in the expert opinion series. I thought this might be useful for some of you after an interesting ‘google alert’ brought up these
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!)