Medical Oncologist
CION Cancer Clinics
Pancreatic cysts and tumours in VHL, explained | CION Cancer Clinics
Most people with VHL who have something on the pancreas have cysts, and these are almost always harmless. A smaller group develop a slow-growing neuroendocrine tumour, which is what surveillance mainly watches for. This page explains the kinds of lesion VHL causes, what happens after one is seen on a scan, and when an operation is considered. At CION Cancer Clinics, our oncologists plan screening and care for families with an inherited cancer syndrome, explained in plain words.
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Medically reviewed by Dr. Naresh GunduConsultant Medical Oncologist · MBBS, DNB (Internal Medicine), DM (Medical Oncology, AIIMS) · last reviewed September 2026, next review due September 2027
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On this page
- Is something on the pancreas in VHL dangerous?
- Which kinds of pancreas lesion does VHL cause?
- What happens when something is seen on the pancreas?
- The words you will meet, in plain language
- A cyst or a tumour: how are they handled?
- Four things people fear, and what is actually true
- What this page cannot tell you
- Common questions about the pancreas in VHL
The short answer
Is something on the pancreas in VHL dangerous?
Usually not. Most people with VHL who have something on the pancreas have cysts, which are almost always harmless and rarely need treatment. A smaller group develop a neuroendocrine tumour, a slow-growing tumour that can spread if it becomes large. That tumour is what pancreas surveillance is really looking for.
Why VHL reaches the pancreas
The VHL gene works in cells all over the body. When one copy is faulty from birth, growths can form in several organs, and the pancreas is one of them. The same abdominal MRI that watches the kidneys also shows the pancreas, so no extra scan is usually needed. For families travelling from the districts, that means one visit covers both organs.
What the pancreas does
It makes digestive juices that break down food, and hormones such as insulin that control blood sugar. Cysts very rarely interfere with either. When many cysts crowd the pancreas, digestion or blood sugar can be affected, but both can be managed with tablets or capsules.
A pancreatic cyst in VHL is not the same thing as pancreatic cancer. The two behave very differently.What it might be
Which kinds of pancreas lesion does VHL cause?
A lesion is simply anything unusual on a scan. In VHL it is almost always one of these four.
Simple cysts
Small pockets of fluid, often several. They are the most common finding and usually stay harmless for life. They are noted and watched on the routine scan.
Serous cystadenoma
A cluster of many tiny cysts, sometimes described as looking like a sponge. It does not turn into cancer and is only removed if it grows large enough to press on something.
Neuroendocrine tumour
A solid tumour from the hormone-making cells of the pancreas. In VHL it usually makes no hormones and causes no symptoms, so it is found on a scan.
The team weighs
- Its size
- How fast it is growing
- Where in the pancreas it sits
A pancreas that works less well
Rarely, many cysts crowd out working tissue. This can cause diabetes, or oily, pale stools because food is not digested fully. Enzyme capsules taken with meals and diabetes treatment manage both.
Not sure whether this applies to you?
Ask an oncologistAfter the scan
What happens when something is seen on the pancreas?
The routine MRI
Your abdominal MRI shows the lesion, its size and whether it is fluid or solid. A radiologist compares it with your previous scans, which is why you should always bring the old images.
Review by a specialist
A cyst on its own usually means nothing changes except that it is noted. A solid lesion is reviewed by a doctor experienced in pancreas tumours and VHL.
Extra tests if it is solid
An endoscopic ultrasound or a special PET scan that lights up neuroendocrine cells may be used to confirm what it is. Blood sugar and digestion may be checked too.
Watch or treat
Most small tumours are watched with scans more often, so the team can see how quickly they change. Removal is considered once a tumour reaches around three centimetres, sometimes smaller in the head of the pancreas, or if it grows quickly.
On your report
The words you will meet, in plain language
- Lesion
- Anything that looks different from normal tissue on a scan. It is a neutral word and does not mean cancer.
- Cystic and solid
- Cystic means filled with fluid. Solid means made of tissue. Solid lesions get closer attention.
- Pancreatic neuroendocrine tumour
- A tumour from the hormone-making cells of the pancreas, often shortened to PNET or pNET on a report.
- Non-functioning
- A neuroendocrine tumour that makes no hormones. Most in VHL are of this kind.
- Endoscopic ultrasound
- A thin camera passed through the mouth into the stomach, with an ultrasound probe that sees the pancreas close up. You are sedated for it.
- DOTATATE PET scan
- A scan using a tracer that sticks to neuroendocrine cells. It helps confirm a tumour and check whether it has spread.
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Side by side
A cyst or a tumour: how are they handled?
Pancreatic cyst
Neuroendocrine tumour
Filled with fluid
Made of solid tissue
Almost never becomes cancer
Can spread to the liver if it grows large
Watched on the routine scan
Watched more often, with extra tests
Treated only if it blocks something
Removed once size or growth crosses a threshold
Handled by the VHL team
Handled with a pancreas surgeon and oncologist
Commonly believed
Four things people fear, and what is actually true
"A cyst on the pancreas means pancreatic cancer."
In VHL, pancreatic cysts are common and almost always harmless. The common pancreatic cancer that people have heard about is a different disease, and VHL does not usually cause it.
"Every tumour must be removed the moment it is seen."
Pancreas surgery is a major operation. Small neuroendocrine tumours in VHL often grow slowly, so they are watched and removed at the point where the benefit clearly outweighs the risk of the operation.
"No stomach pain means nothing is there."
Most VHL pancreas lesions cause no symptoms at all, even when they are growing. That is exactly why the abdominal MRI is part of routine surveillance, and why a missed scan matters more than a quiet stomach suggests.
"Surgery will leave me diabetic for life."
Not necessarily. Surgeons remove as little pancreas as they safely can, and many people keep normal blood sugar afterwards. The risk depends on how much is removed, and your surgeon can estimate it for you.
Being straight with you
What this page cannot tell you
It cannot tell you whether the lesion on your scan is a cyst or a tumour, or whether it needs treatment. That depends on the images themselves, on earlier scans for comparison and on a team that sees VHL regularly. What your specific variant means is a question for the counsellor who ordered the test.
Where the evidence is thin
VHL pancreas tumours are uncommon, so the size limits used for surgery come from a small number of expert centres. The particular VHL variant in the family may also affect risk, though studies so far are small. Newer tablets can shrink some of these tumours, and experience with them is still growing.
Who this does not apply to
Pancreatic cysts are common in the general population too, and most have nothing to do with VHL. If you have no VHL fault, or tested negative for your family's fault, a cyst is judged by different rules.
Yellowing of the eyes or skin, dark urine with pale stools, or severe pain in the upper abdomen needs a doctor the same day.Questions we are asked
Common questions about the pancreas in VHL
Will my pancreatic cysts turn into cancer?
VHL pancreatic cysts almost never do. They are recorded on each scan and usually left alone. The lesions that need watching are the solid neuroendocrine tumours, which are a separate kind of growth. Your report should make clear which one you have. If it does not, ask.
How is a neuroendocrine tumour different from pancreatic cancer?
It starts in the hormone-making cells rather than the cells lining the ducts, and it usually grows far more slowly. It can spread if left to grow large, which is why it is watched closely. The outlook, tests and treatments are all different from common pancreatic cancer.
What size does a tumour need to be before surgery?
Expert centres usually consider removal at around three centimetres, sometimes smaller for tumours in the head of the pancreas, or earlier if the tumour is growing fast. Your team weighs this against the risks of the operation. The final decision is always made for your tumour, not by a single number.
What does the operation involve?
It depends on where the tumour sits. A small tumour can sometimes be shelled out on its own. Others need part of the pancreas removed. Surgeons try to keep as much healthy pancreas as possible. Ask how many of these operations your surgeon performs each year.
Do I need an endoscopic ultrasound?
Only if the MRI leaves a real question, usually about a solid lesion. It gives a closer view, and a tiny sample can be taken through it if needed. It is done under sedation and you go home the same day. Most people with only cysts never need one.
Can the pancreas stop working properly?
Rarely. When cysts crowd out much of the pancreas, digestion or blood sugar can suffer. Signs include oily, pale stools and weight loss, or thirst and passing urine often. Enzyme capsules with meals and diabetes treatment control both well. Mention any of these at your next visit rather than waiting for the scan.
Is there a tablet for VHL pancreatic tumours?
Newer tablets that target the pathway VHL disrupts can shrink some pancreatic neuroendocrine tumours as well as kidney tumours. They are not suitable for everyone and are not safe in pregnancy. Access and cost in India vary, so ask your oncologist whether one is relevant to you.
Can the special PET scan be done in Hyderabad?
Yes, the PET scan used for neuroendocrine tumours is available at a few nuclear medicine centres in Hyderabad. It is not needed for everyone, only when a solid lesion needs to be confirmed or staged. Your team will tell you whether it adds anything in your case.
Your Specialists
Meet CION's oncologists. Bring your family history or genetic report to them.
Our medical oncologists see people with a strong family history of cancer, arrange genetic counselling and testing where it fits, and plan the checks that follow.
Medical Oncologist
Dr. C. Raghavendra Reddy
MBBS(Gold Medal), DNB(General Medicine), DM(Medical Oncology)(Gold Medal)
Medical Oncologist
Dr. Bharati Devi Gorantla
MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
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Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
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Sources
- GeneReviews (NCBI) — Von Hippel-Lindau Syndrome
- National Cancer Institute — Pancreatic Neuroendocrine Tumors (Islet Cell Tumors) Treatment (PDQ)
- MedlinePlus Genetics — Von Hippel-Lindau syndrome
- Cancer.Net (ASCO) — Von Hippel-Lindau Syndrome
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
Keep reading
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Kidney surveillance and the 3 cm ruleThe same abdominal MRI, and how kidney tumours are timedPhaeochromocytoma screening in VHLThe adrenal check that comes before any abdominal surgeryVon Hippel-Lindau: every organ involvedWhere the pancreas fits in the whole conditionVHL surveillance scheduleEvery check a carrier needs, and roughly when
Talk to us
Worried about a pancreas finding on your VHL scan?
Bring your MRI report and images, and any earlier scans for comparison. We will help you understand what was seen and arrange a specialist opinion if it is needed. One helpline serves every CION centre.