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 which 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 a 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 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!
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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
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