A blog by Ronny Allan

Pancreatic Cancer vs Pancreatic Neuroendocrine Neoplasms

Pancreatic Cancer vs Pancreatic Neuroendocrine Neoplasms


Disclaimer

This information is for education and reassurance only.
It is not a substitute for personalised medical advice, diagnosis, or treatment. Tumours arising in the pancreas can come from different cell types and behave in very different ways. Decisions about investigations, surgery, systemic therapy, surveillance, or symptom management must be made by your own specialist team, who understand your full medical history, imaging, pathology, and individual circumstances.

Every patient’s situation is unique.
The terms “pancreatic cancer” and “pancreatic neuroendocrine neoplasm (NEN)” describe biologically distinct diseases with different behaviours, treatments, and outcomes. The information in this article is designed to support understanding, not to guide personal medical decisions.

If you have questions about your diagnosis or treatment plan, please speak directly with your pancreatic or neuroendocrine specialist team.


Why These Are Not the Same Disease — and Why Words Matter


Purpose of this article

This article explains why pancreatic cancer and neuroendocrine neoplasms of pancreatic origin are not the same disease, why the confusion persists, and why accurate terminology matters for patients, clinicians, the media and the public.

 

Quick Summary

  • “Pancreatic cancer” almost always refers to pancreatic ductal adenocarcinoma (PDAC) — an aggressive exocrine cancer.

  • Pancreatic NENs arise from the endocrine pancreas and include NET (G1–G3) and Neuroendocrine Carcinoma (NEC).

  • These groups have different biology, behaviour, treatments, and prognoses.

  • Pancreatic NEC is aggressive, often similar to PDAC.  But they remain a biologically different cancer.

  • Pancreatic NETs are a heterogenous collection of different functional or non functional tumours and are not pancreatic cancer in the classical/biological sense.

  • Mislabelling causes confusion, fear, and misinformation.

  • Words matter.

 

⭐ Exocrine vs Endocrine Pancreas — the split that explains nearly everything

Before discussing PDAC or NENs, it’s essential to understand that the pancreas contains two completely different systems.

1. The Exocrine Pancreas (≈95% of the organ)

Produces digestive enzymes. Tumours arising here are what medicine traditionally calls pancreatic cancer.

These include:

  • Pancreatic ductal adenocarcinoma (PDAC) — ~90%

  • Acinar cell carcinoma

  • Adenosquamous carcinoma

  • Squamous cell carcinoma

  • Colloid carcinoma

  • Malignant MCN / IPMN / SPN

  • Pancreatoblastoma

  • Primary pancreatic lymphoma (not a carcinoma but can mimic one)

These cancers share similar pathways: CT/MRI imaging, surgical assessment, chemotherapy, and poor survival statistics.

This is the group the public recognises as “pancreatic cancer”.

 

2. The Endocrine Pancreas (≈5% of the organ)

Produces hormones such as insulin, glucagon, and somatostatin. Tumours arising here are neuroendocrine neoplasms (NENs) — a completely different family.

These include:

  • Pancreatic NET (G1–G3) — well‑differentiated

  • Pancreatic NEC — poorly differentiated, high‑grade, very aggressive

These are not pancreatic cancers in the classical sense.

They have:

  • different cells of origin

  • different biology

  • mostly different imaging (DOTATATE PET vs CT)

  • different treatments (SSA, PRRT, targeted therapy, even different chemotherapy when applicable)

  • different prognostic patterns

A tumour in the pancreas is not automatically “pancreatic cancer”.

 

Pancreatic Ductal Adenocarcinoma (PDAC) – What people almost always mean or infer when they say or read/hear about  “pancreatic cancer”

Biology:

  • Highly aggressive

  • Dense stroma → treatment resistance

  • Early metastasis

Key symptoms:

  • Jaundice

  • Rapid weight loss

  • Severe abdominal/back pain

Prognosis:

  • e.g. UK 5‑year survival: <7%

  • Metastatic: ~3%

It’s even possible these statistics are worse as including pancreatic NETs might skew those data.

Treatment:

  • e.g. FOLFIRINOX

  • e.g. Gemcitabine + nab‑paclitaxel

  • Surgery (as per guidelines but not common)

PDAC dominates statistics and media reporting.

 

⭐ Exocrine Pancreatic Cancers Other Than PDAC

  • Acinar cell carcinoma — 1–2%, often better prognosis

  • Adenosquamous carcinoma — rare, aggressive

  • Squamous cell carcinoma — extremely rare

  • Colloid carcinoma — 1–3%, arises from IPMN, better prognosis

  • Malignant MCN / IPMN / SPN — cystic tumours with malignant potential

  • Pancreatoblastoma — very rare, mostly in children

  • Primary pancreatic lymphoma — treated as lymphoma

These are the true pancreatic cancers outside PDAC.


Pancreatic Neuroendocrine Neoplasms (Pancreatic NENs)

Pancreatic NET (G1–G3) i.e. well differentiated

  • Often slow‑growing but more aggressive in high grade 2 and grade 3

  • Very different behaviour from PDAC

  • Prognosis:

    • Localised: >90%

    • Regional: ~75%

    • Metastatic: 35–45%

    • Treatments: Mainly SSA, PRRT, targeted therapy, surgery, liver‑directed therapy, but also chemotherapy, particularly in Grade 3 and often in high grade 2. 
    • Heterogenous survival rates


Pancreatic NEC

  • 10–15% of pancreatic NENs, <0.3% of all cancers of the pancreas

  • Very aggressive

  • Prognosis: similar to PDAC

  • Treatment: mostly platinum‑based chemotherapy but not necessarily the same as PDAC. 

Pancreatic NEC is the only pancreatic NEN that behaves like a classical carcinoma — but it is rare in comparison to PDAC and Pancreatic NETs.

⭐ MINEN — Mixed Neuroendocrine–Non‑Neuroendocrine Neoplasms in the pancreas (Simple Explanation)

Sometimes a tumour in the pancreas contains both:

  • an exocrine cancer component (such as ductal adenocarcinoma or acinar cell carcinoma), and

  • a neuroendocrine component (NET or NEC).

To be classified as a MINEN, each component must make up at least 30% of the tumour. This ≥30% rule is the official WHO definition.

Why MINEN matters

  • MINENs are rare, but they help explain why pathology reports sometimes show “mixed features”.

  • The most aggressive part of the tumour usually determines how it behaves and how it is treated.

    • If NEC is present → NEC drives prognosis

    • If PDAC is present → PDAC drives prognosis

    • If NET + acinar → acinar usually drives behaviour

Potential MINEN patterns in the pancreas

  • PDAC + NEC (the most common pancreatic MINEN)

  • Acinar cell carcinoma + NEC (well‑documented in case reports)

  • Acinar cell carcinoma + NET (rarer but recognised)

  • Triple‑phenotype tumours (acinar + ductal + endocrine) — very rare

 

⭐ Why Mislabelling Matters

Calling a pancreatic NET “pancreatic cancer” leads to:

  • incorrect assumptions about survival

  • inappropriate comparisons with PDAC

  • unnecessary fear

  • confusion in the public narrative

  • misdirected awareness and fundraising

The biology is different. The treatments are different. The outcomes are different.

 

⭐ How Cancer Registries Add to the Confusion

Both the UK and USA classify cancers by organ, not by tumour family.

This means:

  • A pancreatic NET can be counted under pancreatic cancer, a rectal NET under bowel/colorectal cancer, lung NET under lung cancer

  • They never appear in “Top 10 cancers” lists — even though reconstructed data shows they would (e.g. as data modelling in UK and Australia confirms).

Some NENs are therefore in danger of being statistically invisible. This invisibility reinforces the misconception that NENs are rare.

 

⭐ Famous Cases — Corrected


📌Steve Jobs – click here

Pancreatic NET (not PDAC).

📌Aretha Franklin – click here

Pancreatic NET (not PDAC)

📌Wilko Johnson – click here

Pancreatic NET (not PDAC)

📌Maria Menounos – click here

Pancreatic NET (not PDAC)

 

Prince Philip — Afternote (Words Matter)

Some recent 2026 news reports suggested Prince Philip had “pancreatic cancer”. The palace never confirmed the subtype, and nothing publicly released allows classification as PDAC, NET, NEC or any other cancer of the pancreas. This is a reminder that survival time is not the only diagnostic and too many people in the NET community were quick to jump on this bandwagon without any evidence. 

Bottom Line

Pancreatic cancer and pancreatic neuroendocrine neoplasms are not the same disease. They arise from different cells, behave differently, respond to different treatments, and carry different prognoses. Using the correct terminology is essential for clarity, accuracy, and patient understanding and empowerment.

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.

Words are important and so is Neuroendocrine Cancer awareness

Read – click here

Click the picture to read


What about Neuroendocrine Carcinoma of the Pancreas?

It’s true to say that Neuroendocrine Carcinomas of particular organs behave just as aggressively as adenocarcinomas in the same organ.  In fact, in some organs they can behave even more aggressively.  So I get the affiliation in the poorly differentiated world of Neuroendocrine Carcinomas. However, Neuroendocrine Neoplasms includes both Neuroendocrine Carcinoma and Neuroendocrine Tumours and awareness for this cancer is important too.  But they are different biological cancers as seen in the exocrine and endocrine explanation above. 

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.

I give you one example I wrote about in my article “I wish I had another cancer“.  This is a story about a lady with a Neuroendocrine Carcinoma of the pancreas who was featured in a controversial marketing campaign for Pancreatic Cancer awareness.  Although controversial, I thought it was a fantastic and brave campaign.  As I’ve said before, more people and organisations should listen to positive disruptors in all cancer types.

Click on the picture to read more


Disclaimer

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.


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CategoriesAwareness
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By Ronny AllanOn 5 Comments
By Ronny Allan

Ronny Allan is a 3 x award-winning accredited patient leader advocating internationally for Neuroendocrine Cancer and all other cancer patients generally. Check out his Social Media accounts including Facebook, BlueSky, WhatsApp, Instagram and and X.

5 thoughts on “Pancreatic Cancer vs Pancreatic Neuroendocrine Neoplasms”

  • Mary

    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.

    Reply

    • 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.

  • CHRIS SCHREIBER

    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.

    Reply

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