Reviewed and updated 27th September 2021
I campaign hard for Neuroendocrine Cancer awareness including continually pointing out that a Neuroendocrine Cancer with a pancreatic primary is NOT Pancreatic Cancer as is often quoted in the press. The two main reasons I take up these campaigns are as follows:
1. They are totally different cancers despite an anatomical relationship. Although they can share a similar presentation, they can have different signs, different treatments, and vastly different prognostic outcomes. Anyone looking for useful information on either needs to be very careful on interpretation, they could end up with very bad advice and in some situations, become more concerned than they should be. (particularly with the prognostics). See more below.
2. These two different cancer types have different awareness organisations, patient support groups and patient leaders/advocates. In most cases, vastly different awareness messages. Both organisations and advocates need all the help they can get, they need all the resources and funding they can get.
Both Pancreatic Cancer and Neuroendocrine Cancer are diseases that need maximum publicity, both types of cancer have their own unique situations, thus why the awareness messages can be so vastly different. It’s really important, therefore, that publicity surrounding famous patients be attributed to the correct cancer type in order that the advocate organisations and supporters can gain maximum benefit to forward their causes. Unfortunately, thanks to doctors and media, this very often doesn’t work out in favour of Neuroendocrine Cancer due to the Human Anatomy of Neuroendocrine Cancer (this problem goes beyond the pancreas).
Where the press and doctors regularly get it wrong
Two famous people, one in 2011 and the other this year, are regularly reported in the press as having died of Pancreatic Cancer.
Steve Jobs. One of the most famous technical innovators of his time and creator of the most valuable company in the world. He had a Neuroendocrine Cancer with a pancreatic primary. Read his story here.
To summarise, Neuroendocrine Cancer is not a “type” of another cancer.
What are the differences?
For me, one of the two main differences is the cell type. When people talk about Pancreatic Cancer, they really mean something known as “Pancreatic Adenocarcinoma“. It starts in the exocrine cells, which produce enzymes to support digestion. Neuroendocrine Tumors start in the endocrine cells which produce hormones.
For me, the other significant difference is prognostics. Unfortunately, it is statistically proven that most people with Pancreatic Adenocarcinoma will die quickly, whereas most people with Neuroendocrine Tumors with a pancreatic primary will live a lot longer in comparison.
For a more detailed comparison, see this excellent article from NET Research Foundation.
Pancreatic Cancer – Why I support their campaigns
Personally speaking, as a healthcare advocate online, I do support many cancer awareness campaigns, I think this is important to get similar help coming the other way (this frequently works for me). However, I very much suspect, other than Neuroendocrine Cancer, my biggest support area online is for Pancreatic Cancer and other “less survivable” cancers. I’m drawn by their excellent campaigns where they focus on key messages of prognostics for what is essentially a silent disease (in many ways the same issue with Neuroendocrine Cancer) and they make these more compelling by focusing on people rather than gimmicks. The prognostics can be upsetting reading as they are quite shocking figures which have not changed much in the past 40 years, a key sign that more must be done for this awful disease. I frequently share this symptom graphic below because it might save a life and I ask that you do too.
Often though, the patients with a Neuroendocrine Cancer (pancreatic primary) are drawn to getting support from Pancreatic Cancer organisations. I suspect this is a combination of their own perceptions, their doctor’s language in describing their cancer type, and even something as simple as it was the first place they found help and support and they stick with that organisation. You may also be interested in my article “I wish I had another cancer” – click here.
Please also check out the stories of those who were misdiagnosed with Pancreatic Cancer when they actually had a less dangerous Pancreatic Neuroendocrine Tumor – To Hell and Back click here.
And the amazing story of Wilko Johnson (famous British rock star ex Dr Feelgood band) who was told he would die – and didn’t. He still rocks the stage today. From Dying to Living click here.
But I must add, I think it’s wrong when famous pancreatic NET patients become Ambassadors for Pancreatic Cancer, we need their support too! Check out the story of actress Olivia Williams click here. (edit: she is now assisting Neuroendocrine Cancer UK).
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Every July, I think back to my diagnosis of advanced Neuroendocrine Cancer in 2010. I guess one of the reasons I do this is to