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Pancreatic Cancer · Neuroendocrine Tumours (PNET) · Reviewed by CION Oncologists
Glucagonoma, VIPoma and other functional PNETs — when the hormone causes the symptoms
A functional pancreatic neuroendocrine tumour is rare, and the symptoms it causes — a rash that will not clear, or watery diarrhoea that continues even when you fast — are usually blamed on something commoner for months. This page explains what each syndrome looks like, how it is confirmed, and what happens once it is.
- The hormone causes the symptoms — the tumour itself is often silent until the syndrome is recognised.
- A rash or loose stools is rarely this — the commoner explanations are ruled out first, and usually found.
- Syndrome and hormone must match — a raised level alone, without the matching picture, does not diagnose it.
- Not the same disease as adenocarcinoma — functional PNETs usually grow slowly and follow their own treatment pathway.
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When the Hormone, Not the Lump, Is What Makes You Ill
Most pancreatic neuroendocrine tumours are quiet. They sit in the pancreas, release nothing the body notices, and are often found on a scan ordered for something else entirely. A functional PNET is the exception. It pours out one hormone in amounts the body cannot absorb quietly, and it is that hormone — not the size of the tumour — that produces the symptoms you came here to read about. The distinction, and why it changes the whole conversation, is set out in functioning versus non-functioning PNETs.
Insulinoma is the commonest tumour in this functional group. This page is about the ones behind it: glucagonoma, VIPoma, somatostatinoma, and a small handful rarer still. Each is genuinely uncommon — uncommon enough that most doctors will see very few in a working lifetime. That rarity is exactly why these diagnoses are so often slow to arrive. The symptoms look like far commoner conditions, those commoner conditions get treated first, and only when the treatment does not work does anyone look further. If that has been your experience over recent months, it is the usual story rather than negligence.
Two things are worth holding onto before the detail. The first is that these tumours are not pancreatic adenocarcinoma, which is what most people mean when they say pancreatic cancer. They begin in different cells, most grow far more slowly, and they are assessed, treated and followed on their own separate pathway. The wider picture sits in pancreatic neuroendocrine tumours explained. The second is that the syndrome is treatable in its own right. Long before anything is decided about the tumour itself, the diarrhoea, the rash, the low potassium and the unstable blood sugar can usually be brought under control, and people generally feel substantially better once that happens.
The other honest point to make early is this: a stubborn rash, or months of loose stools, is almost never a functional PNET. Eczema, psoriasis, fungal infection, coeliac disease, irritable bowel syndrome, gut infections and medication side effects between them explain the overwhelming majority of people with these complaints. What raises the question is not any single symptom but a pattern that refuses to resolve on correct treatment for the obvious diagnosis, particularly when weight loss or a disturbed blood result travels with it.
Did you know? NCCN guidance on neuroendocrine tumours is explicit that a functional PNET is diagnosed on the syndrome and the hormone together — a raised level on its own, without symptoms that the hormone actually explains, does not make the diagnosis, because several ordinary things lift these levels, including acid-suppressing medication, impaired kidney function and simply not having fasted before the sample. The same guidance points to somatostatin-receptor imaging, the DOTATATE PET scan, for locating and staging a well-differentiated tumour once the biochemistry fits, and recommends that genetic evaluation be considered for anyone with a pancreatic neuroendocrine tumour, because a share of them arise as part of an inherited syndrome such as MEN1 or von Hippel-Lindau rather than on their own.
One hormone, one syndrome
What Each of These Tumours Actually Does
Each card describes the pattern a specialist listens for. None of these features on its own means a tumour is present.
Glucagonoma
The rash that keeps coming back
The glucagonoma rash has a name of its own: necrolytic migratory erythema. It moves, it returns in crops, and it favours the groin, buttocks, lower limbs and the skin around the mouth, blistering and crusting at the edge while healing in the centre. It is repeatedly treated as eczema, psoriasis or a fungal infection before anyone questions the label.
Glucagonoma
What travels alongside the skin
Weight loss without dieting, new or suddenly harder-to-control diabetes, a sore red tongue and cracked mouth corners, anaemia, low mood, and a raised tendency to clot in the legs or lungs. The combination is what is telling — a rash plus weight loss plus new diabetes is a very different conversation from a rash on its own.
VIPoma
Diarrhoea that continues when you fast
A VIPoma drives a secretory diarrhoea — large volume, watery, and, crucially, it does not stop when you stop eating. That one feature is what separates it from most everyday diarrhoea. It is often labelled irritable bowel syndrome or a lingering infection for months, until the volume and the blood results force a rethink.
VIPoma
What the blood tests show
The older name for the syndrome, WDHA, spells out the pattern: watery diarrhoea, low potassium, and little or no stomach acid. Dehydration, muscle weakness and cramps, flushing and a disturbed acid balance all follow from the fluid and salt being lost. Correcting the potassium and the fluid is urgent in its own right, whatever the scan eventually shows.
Somatostatinoma
Diabetes, gallstones and fatty stools together
Rarer again, and quieter. The classical trio is diabetes, gallstones and pale, greasy, hard-to-flush stools, sometimes with reduced stomach acid. Because each part of that trio is common on its own, a somatostatinoma is often found by accident on a scan or at surgery for something else rather than being suspected upfront.
Rarer still
The other hormone syndromes
A small number of PNETs release other hormones, producing a cortisol-excess picture, a stubbornly high blood calcium, or flushing and diarrhoea of the carcinoid type. They are managed on the same principle: identify the hormone, control the syndrome, then deal with the tumour. Where all of this sits within the wider disease is covered in our complete pancreatic cancer guide.
Side by side
Glucagonoma and VIPoma Compared
The two syndromes people most often arrive having read about, set out against each other.
| Feature | Glucagonoma | VIPoma |
|---|---|---|
| Hormone driving it | Glucagon, which raises blood sugar and breaks down the body's protein and fat stores. | Vasoactive intestinal peptide, which pushes the bowel to secrete water and salts. |
| What you notice first | A migrating, crusting rash, weight loss, and diabetes that appears or worsens without explanation. | Profuse watery diarrhoea that persists through fasting, with thirst, weakness and cramps. |
| Usually mistaken for | Eczema, psoriasis, a fungal rash, or a nutritional deficiency. | Irritable bowel syndrome, a post-infective bowel, or laxative overuse. |
| The blood clue | A markedly raised fasting glucagon level alongside high blood sugar and anaemia. | A raised fasting VIP level alongside low potassium and a disturbed acid balance. |
| Where the tumour usually sits | Most often in the body or tail of the pancreas, and frequently sizeable by the time the rash is explained. | Most often in the tail, and not uncommonly already spread to the liver when it is found. |
| What settles the symptoms first | Somatostatin-analogue-class therapy, with nutritional and skin support and blood-sugar control. | Urgent fluid and potassium replacement, then somatostatin-analogue-class therapy, which usually reduces the diarrhoea markedly. |
| Where the tumour itself is dealt with | Removal, where the tumour is resectable, is coordinated with specialist HPB and GI partner surgeons. | The same: any resection or liver-directed procedure is arranged with partner centres, not performed at CION. |
If you are holding a hormone result nobody has explained, or a rash and a scan that nobody has connected, that is worth an unhurried specialist opinion rather than another round of guesswork. The pathway once a diagnosis is made is set out in pancreatic cancer treatment in Hyderabad — or book a free consultation and call 1800 202 8726.
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Rare Does Not Mean Unmanageable
Controlling the syndrome usually comes first, and it is often what makes the biggest early difference to how you feel.
What actually happens
What Happens When You Bring This to Us
-
A free 45-minute consultation, and a history taken properly
These syndromes are recognised in the history far more often than on a scan. How long the rash or the diarrhoea has run, whether it continues when you fast, what weight you have lost, what your blood sugar has been doing, and what has already been tried and failed — that is what the first appointment is for.
In-house at CION -
Blood work matched to the symptom, not a blanket panel
Fasting gut-hormone levels are ordered selectively, against the syndrome in front of us, along with electrolytes, blood sugar, nutritional bloods and general markers. Acid-suppressing medication and kidney function are checked first, because either can lift a hormone level and send an investigation down the wrong road.
In-house at CION -
Imaging to find it, and to see how far it has gone
Pancreatic-protocol CT or MRI is ordered and reported by our team, and compared against any earlier imaging you bring. Where the biochemistry fits but the tumour has not been located, or where staging needs completing, a somatostatin-receptor DOTATATE PET is arranged with partner imaging centres.
CT and MRI in-house; DOTATATE PET coordinated with partner centres -
Tissue confirmation and grading, where it is needed
Endoscopic ultrasound with biopsy is how a small pancreatic lesion is sampled and graded. It is arranged and scheduled by us with specialist gastroenterology and endoscopy partners, performed at their centre, and may be billed there. The grade matters, because it drives what treatment is sensible next.
Coordinated with specialist endoscopy partners -
The syndrome is controlled first, then the tumour is addressed
Fluid and potassium replacement, blood-sugar control, skin and nutritional support and somatostatin-analogue-class therapy are delivered by our medical oncology team, and usually make the biggest early difference to how you feel. Surgery, liver-directed treatment and PRRT are coordinated with partner centres. How the whole plan fits together is set out in pancreatic cancer treatment in Hyderabad.
Systemic and supportive care in-house; procedures coordinated
Bring every result you already have, including old skin or bowel investigations — with a rare syndrome, the answer is often sitting in notes nobody has read end to end. Book a free consultation or call 1800 202 8726.
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What CION Delivers In-House, and What Is Coordinated
Care for a functional PNET is delivered by more than one team. This is the honest split, so you know who to call and where each part of the bill sits.
| Part of your care | Where it happens | What that means for you |
|---|---|---|
| Consultation, syndrome assessment and review of results you already hold | In-house at CION | A free 45-minute appointment at any of 35+ centres across Telangana and Andhra Pradesh, with the results explained rather than handed over. |
| Fasting gut-hormone levels, electrolytes, blood sugar, CA 19-9 and routine bloods | In-house at CION | Ordered selectively against your symptoms and reported by us, with the common false-positive causes checked first. |
| Pancreatic-protocol CT and MRI | In-house at CION | Arranged and reported by our team, and compared against any previous imaging you bring with you. |
| Somatostatin-receptor DOTATATE PET and PET-CT | Coordinated with partner imaging and nuclear-medicine centres | Scheduled by us, performed at the partner centre, and may be billed there. |
| Endoscopic ultrasound with biopsy, ERCP and stenting | Coordinated with gastroenterology and endoscopy partners | Arranged by us where tissue or a blocked duct needs dealing with, performed at their unit, and may be billed there. |
| Removal of the tumour, staging laparoscopy and liver-directed procedures | Coordinated with specialist HPB and GI surgeons | Performed by partner surgeons at their hospital. That part of the cost sits with them, not with us. |
| PRRT for a receptor-positive tumour | Coordinated with partner nuclear-medicine centres | Referred and planned with the partner service where it is appropriate, and billed there. |
| Somatostatin-analogue-class therapy and other systemic treatment for PNET | In-house at CION | Given and monitored by our medical oncology team, with the hormone symptoms tracked alongside the scans. |
| Radiation, where it is indicated | In-house at CION | Planned and delivered by our radiation oncology team as part of one plan, not a separate referral. |
| Nutrition and enzyme support, skin, potassium and glucose management, pain and psycho-oncology | In-house at CION | Part of the same appointment rather than an afterthought, because with these syndromes it is often what makes you feel human again. |
| Genetic counselling where an inherited syndrome is suspected | In-house at CION | Counselling comes before any test, so you know in advance what a result would mean for you and for your relatives. |
If you want the wider picture before your appointment, start with our complete pancreatic cancer guide, then read pancreatic neuroendocrine tumours explained and functioning versus non-functioning PNETs for where your own tumour sits.
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Common questions
Glucagonoma and VIPoma - your questions answered
What is a glucagonoma, in plain terms?
A glucagonoma is a rare tumour of the pancreas that releases glucagon, a hormone that raises blood sugar and breaks down the body's protein and fat stores. The tumour itself is usually slow-growing, and it is the hormone that makes people unwell rather than the lump. The typical picture is a rash that keeps returning in crops and moves around the body, weight loss without dieting, diabetes that appears or suddenly becomes harder to control, a sore red tongue, anaemia and a raised tendency to form clots. Each of those on its own is common and almost always has an ordinary cause. What raises the question of a glucagonoma is the combination, running on for months, and not settling on correct treatment for the obvious diagnosis.
What does the glucagonoma rash look like, and why is it missed so often?
The glucagonoma rash has a name of its own, necrolytic migratory erythema. It usually starts as red patches that blister, crust and then heal in the centre while the edge keeps spreading outwards, which gives it a moving, ring-like appearance. It favours the groin, buttocks, lower legs and the skin around the mouth, and it comes and goes in waves rather than staying put. It is missed because it looks like several far commoner skin conditions, and because eczema, psoriasis and fungal infection are the sensible first thoughts for any doctor seeing it. The clue that something else is going on is usually time and company: a rash that has failed several correct treatments, and that arrives alongside weight loss, a sore mouth or new diabetes, deserves a second look rather than another cream.
What is a VIPoma, and how is it different from ordinary diarrhoea?
A VIPoma releases vasoactive intestinal peptide, a hormone that drives the bowel to pour water and salts into the gut. The result is a large-volume, watery diarrhoea, and the most useful distinguishing feature is that it continues when you stop eating. Most everyday diarrhoea settles substantially with fasting; secretory diarrhoea of this kind does not. Losing that much fluid and salt causes thirst, weakness, muscle cramps and a low potassium level, and the stomach often produces little acid, which is where the older name for the syndrome comes from. It is commonly labelled irritable bowel syndrome or a lingering infection for months before anyone measures the volume properly or acts on the blood results. Correcting the fluid and potassium is urgent in itself, whatever imaging eventually shows.
Are these tumours cancer?
They are treated as cancers, but they are not the disease most people mean by pancreatic cancer. Pancreatic adenocarcinoma arises from the duct cells and behaves aggressively. Functional neuroendocrine tumours such as glucagonoma and VIPoma arise from hormone-producing cells, most are well differentiated, and they usually grow far more slowly. Some are confined to the pancreas and removable; others have already spread to the liver by the time the syndrome is recognised, and even then they can often be controlled for a long period. Because the two diseases behave so differently, published survival figures for pancreatic cancer do not describe this situation at all, and applying them here is misleading. What matters for outlook is the grade, the extent of spread and how the tumour responds to treatment, and those should be discussed against your own scans and pathology rather than against a number found online.
Which tests confirm a functional PNET?
Two things have to line up: the syndrome and the hormone. The fasting level of the relevant gut hormone is measured, but a raised level alone does not make the diagnosis, because acid-suppressing medication, impaired kidney function and not having fasted properly can all lift these results. Alongside that, electrolytes, blood sugar and nutritional bloods show what the hormone is doing to the body. Imaging then locates the tumour, usually starting with a pancreatic-protocol CT or an MRI, ordered and reported by CION. Where the biochemistry fits but the tumour has not been found, or staging needs completing, a somatostatin-receptor DOTATATE PET is arranged with partner imaging centres. Tissue confirmation and grading, when they are needed, come from endoscopic ultrasound with biopsy, coordinated with specialist endoscopy partners and performed at their unit.
What does CION do for a functional PNET, and what happens at the first visit?
The first visit is a free 45-minute consultation with a medical oncologist at any of our 35+ centres. We take the history properly, review every result you already hold, and say plainly whether the pattern fits a functional PNET or points somewhere commoner. Hormone levels, electrolytes, blood sugar and routine bloods, pancreatic-protocol CT and MRI, genetic counselling, somatostatin-analogue-class and other systemic therapy for PNET, radiation where indicated, and nutrition, skin, pain and psycho-oncology support are all delivered in-house at CION. Endoscopic ultrasound and biopsy, ERCP and stenting, DOTATATE PET, PRRT and any surgery are coordinated with specialist HPB, gastroenterology, endoscopy and nuclear-medicine partner centres, performed there and may be billed there. Bring your scans, reports and current medication list, and bring someone with you if you can.
Medical disclaimer: This page explains the rarer functional pancreatic neuroendocrine tumour syndromes - glucagonoma, VIPoma and somatostatinoma - in general terms, and is reviewed by a CION medical oncologist with reference to NCCN guidance on neuroendocrine tumours. It is general information and not a diagnosis: a rash, diarrhoea or a raised hormone level almost always has a commoner explanation, and your own results should be discussed with a doctor who knows your history. Consultation and syndrome assessment, fasting gut-hormone levels, electrolytes, blood sugar, CA 19-9 and routine bloods, pancreatic-protocol CT and MRI, genetic counselling, somatostatin-analogue-class and other systemic therapy for PNET, radiation where indicated, and nutrition, enzyme (PERT), pain, psycho-oncology and survivorship support are delivered by CION. Endoscopic ultrasound and biopsy, ERCP and biliary or duodenal stenting, staging laparoscopy, somatostatin-receptor DOTATATE PET and PET-CT, PRRT, and all pancreatic surgery including tumour resection and liver-directed procedures are coordinated with specialist HPB, gastroenterology, endoscopy and nuclear-medicine partner centres and may be billed there.