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.
Aretha Franklin. One of the most famous soul singers of her time. She had a Neuroendocrine Cancer with a pancreatic primary. Read her 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).
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 as they are not members of the private group or followers of my sites in any official capacity. 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.
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5 thoughts on “Pancreatic Cancer vs Neuroendocrine Cancer of Pancreatic Origin”
It’s a good description of the two but the statement about most with PNET will live unfortunately is not true in my opinion. From my research the PNET patient has a poorer prognosis compared to other NETS. I was diagnosed with intermediate grade PNET in 2017 with continued progression. All efforts thus far have failed to stop this disease. Minimizing it will do nothing for awareness. This is real and this is scary. I was diagnosed at age 46. Just hoping I can live long enough to send my daughter off to college some day and she is not even in high school yet. This is real.
sorry to hear about your diagnosis and progression.
Like all things in cancer epidemiology, context is very important so let me outline that context now. The 1 and 5 year survival rate for pancreatic cancer (adenocarcinoma) is 20%, and 7% respectively. In comparison both figures for pancreatic Neuroendocrine Tumours are more than 50%. And this continues to improve, here’s a quote from the biggest NET database analysis every conducted “We found improvements in OS (overall survival) in all distant NETs in SEER 18 over time, with pronounced improvements in OS in distant gastrointestinal NETs and distant pancreatic NETs. It is likely that these trends are an underestimation of the true impact of recent advances in systemic therapies for these subtypes, given the data’s inability to account for more recent drug approvals. Furthermore, these favorable trends in the survival of patients with metastatic NETs will likely continue as data on newer agents, such as peptide receptor radionuclide therapy, become integrated into routine clinical care”. Worth pointing out that the pancreatic cancer prognostics have not really changed that much in 40 years.
It’s true that when you split individual NET types down, pancreatic NETs don’t have the favourable figures that appendiceal or rectal NETs have but they are certainly not the worst NET types in this regard. In fact when you look at the figures for localised pNETs, they fair considerably better than localised NETs in other places such as cecum, small intestine and stomach.
The aim of this article was to draw the main distinctions between pancreatic cancer and neuroendocrine tumours of the pancreas and prognostics remains a very distinct differential.
I am now on my 12th year and continually getting worse. We have corresponded in the past. This lack of public awareness has always bothered me to the point of anger and frustration. Needless to say, I would have not been as diplomatic as you. When Steve Jobs got a liver transplant with it being said that he had liver cancer when he could have help all of us with NETs.Then him dying of pancreatic cancer I thought for sure this disease would get some recognition. He truly let us down as he could have been a voice. Then more recently Aretha Franklin I watched it happen again.
Too many things over the years in my life have been lost to nueroendhrine and the feeling of being on your own with no one knowing what you have,even doctors misdiagnosis causes a feeling of hopelessness.
I am now past the years of fighting and now I just wait until it is over. It is a long tiring battle. I am very tired. I wish you the best of luck with yours.
hang tough Chris.
Excellent description of both diseases and very helpful diagrams. Thank you Ronny.