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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.
Edit: Then in 2023, Maria Menounos, a US celebrity, goes public with “pancreatic cancer”. We need to keep on keeping on about this!
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
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