Medical Oncologist
CION Cancer Clinics
VHL surveillance: the checks a carrier needs for life | CION Cancer Clinics
A VHL carrier needs planned checks of the eyes, brain, spine, kidneys, pancreas, adrenal glands and ears, starting in early childhood and continuing for life. The aim is to find growths while they are small, before they damage sight, press on nerves or spread. This page sets out what is checked, roughly when each check starts, and the warning signs that should never wait for the next appointment. At CION Cancer Clinics, our oncologists explain what a gene result means for you and your family, and plan the checks that follow.
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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
The short answer
Why does a VHL carrier need checks for life?
Because almost everyone who carries a VHL fault develops at least one growth at some point, and most of these growths can be managed well if they are found early. Surveillance is the plan that finds them early. It does not stop growths from forming. It changes when they are found, and how much choice you have about what happens next.
What the checks are looking for
VHL causes growths that are rich in blood vessels. The main ones are haemangioblastomas in the back of the eye, the brain and the spinal cord, kidney cysts and kidney cancer, a hormone-making adrenal tumour called a phaeochromocytoma, cysts and tumours in the pancreas, and a rare tumour of the inner ear. Each organ needs its own test, which is why the schedule has several parts.
Why timing matters so much
A small growth in the eye can often be treated with a laser before it affects sight. A kidney tumour can be watched until removal is worthwhile, then taken out while keeping most of the kidney. Found late, the same growths can cost an eye, kidney function or nerve function. Surveillance buys time to act on your own terms.
This schedule is for people with a confirmed VHL fault, and for relatives at risk who have not yet been tested.Organ by organ
What is checked, and with which test?
Each part of the body needs its own kind of check. None of them hurts, and the routine ones do not use X-rays.
Eyes
A dilated eye examination by a retina specialist, looking at the back of the eye. It is usually the first check a child has, because eye growths can appear early and are easiest to treat when tiny.
Brain and spine
An MRI scan of the brain and the whole spine, looking for haemangioblastomas. MRI uses magnets rather than X-rays, so it can be repeated for decades without a radiation dose.
Young children may need sedation to lie still for the scan.Adrenal glands
A blood or urine test for metanephrines, the breakdown products of stress hormones. Raised levels can point to a phaeochromocytoma long before it causes symptoms. Blood pressure is checked at every visit for the same reason.
Kidneys, pancreas and ears
An MRI of the abdomen shows kidney cysts and tumours, and cysts or tumours in the pancreas.
Also part of the plan
- Hearing tests, for the inner ear tumour
- A yearly examination by a doctor who knows VHL
- Questions about headaches, balance and vision
Not sure whether this applies to you?
Ask an oncologistRoughly when
At what age does each check usually start?
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In the first year of life
A yearly check-up with a doctor who knows VHL, including blood pressure, and eye examinations by a retina specialist. Eye checks then continue for life.
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From around school-starting age
A yearly blood or urine test for adrenal hormones is added. Hearing tests are brought in during childhood and repeated every few years.
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From late childhood or the early teens
MRI scans of the brain and spine begin, usually repeated every other year or so while nothing is being watched.
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From the mid-teens
MRI of the abdomen is added, to look at the kidneys, pancreas and adrenal glands. It is often done on the same day as the brain and spine scan.
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Throughout adult life
The same checks carry on. Your team may shorten the gap between scans when a growth is being watched, and published guidelines differ slightly on exact ages, so your own start dates are set by your team.
On your report
The words you will meet on scan reports
- Haemangioblastoma
- A growth made of tangled blood vessels, found in the brain, spine or eye. It is not cancer, but it can press on nearby nerves or leak fluid.
- Retinal angioma
- The same kind of growth in the retina. Eye specialists may use either name on a report.
- Phaeochromocytoma
- A tumour of the adrenal gland that releases stress hormones and can cause sudden spikes in blood pressure. When it sits outside the adrenal gland it is called a paraganglioma.
- Metanephrines
- Breakdown products of those stress hormones, measured in a blood or urine test.
- Clear cell renal cell carcinoma
- The type of kidney cancer VHL causes. In VHL it is usually found small and watched until removal is worthwhile.
- Endolymphatic sac tumour
- A rare, slow-growing tumour of the inner ear that can affect hearing and balance.
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Symptoms that cannot wait for the next scan
Sudden loss or blurring of vision in one eye, a severe headache with vomiting or unsteady walking, new weakness or numbness in an arm or leg, or attacks of pounding heartbeat with sweating and headache need a doctor the same day. Go to the nearest emergency department and say the person has VHL. Before any operation, and early in any pregnancy, make sure the surgeon or obstetrician knows about VHL, so a phaeochromocytoma can be ruled out first.
Being straight with you
What this page cannot tell you
It cannot give you your own schedule. The outline above follows published guidelines, but the age each check starts and how often it repeats are set by your team from your family history and your own findings. What your specific variant means is a question for the counsellor who ordered the test.
It cannot read your scan
Reports that mention a cyst or a small growth are common in VHL, and many of these are watched rather than treated. Whether a finding needs action depends on its size, where it sits and how fast it is changing. Take every report to the same team, so each scan can be compared with the last.
Who this does not apply to
Most people with a single kidney cyst or one adrenal tumour do not have VHL and do not need this schedule. Relatives who test negative for the family's known fault can stop VHL checks altogether. If nobody in your family has a confirmed result, the first step is counselling, not scans.
If your family has been told surveillance is needed and you are unsure where to begin, call the helpline and describe what you know.Commonly believed
Four things carriers tell us about scans, and what is true
"I feel perfectly well, so I can skip this year's scan."
Most VHL growths cause no symptoms until they are large. The point of surveillance is to find them while you still feel well. Skipping a round can mean the next scan finds something harder to treat.
"Every growth that is found has to be removed straight away."
Many are watched instead. Kidney tumours are often monitored until removal is worth the surgery, and small brain or spine growths that cause no trouble are often left alone. Fewer operations over a lifetime protects the organs.
"All these scans will give me cancer from radiation."
The routine checks in VHL are MRI, which uses magnets, and eye examinations, which use light. CT scans do use X-rays, which is one reason teams prefer MRI for regular checks.
"My child's checks were clear, so they do not have VHL."
Clear checks mean nothing has grown yet. Only a test for the family's fault tells you whether a child carries it. A child who tests negative can stop the checks. A child who carries it needs them even when every scan is clear.
Questions we are asked
Common questions about VHL surveillance
How often will I need an MRI?
For most adults, MRI of the brain, spine and abdomen is repeated every other year or so, and more often when a growth is being watched. The gap depends on what earlier scans showed. Many teams book the scans together, which saves travel and, for children, repeated sedation.
Is contrast dye needed for the MRI?
Usually, yes. Contrast helps small growths show up clearly. Tell the team about any kidney problems, earlier reactions or a possible pregnancy before the scan. In pregnancy, scans are normally done without contrast, and the timing is planned with your obstetrician.
Why is my blood pressure checked every time?
A phaeochromocytoma can raise blood pressure, sometimes in sudden bursts. A reading that has crept up can be the first sign, even before the hormone test changes. It is a quick, cheap check, and it is easy to do at home between visits too.
What changes if I become pregnant?
Pregnancy needs extra planning. The adrenal hormone test is usually repeated before or early in pregnancy, because an unknown phaeochromocytoma can be dangerous during labour. Eye checks continue, and a scan without contrast may be advised part way through. Tell your obstetrician about VHL at the first visit.
Can the checks be done closer to my district?
Eye examinations and blood tests can often be done nearer home. MRI is available in many district centres, but having scans read by one team each time makes small changes easier to spot. Keep every report and scan disc, and bring them to each review.
Do insurance or government schemes pay for surveillance?
It varies by scheme and policy, and rules change. Scans may be covered once a diagnosis is recorded, while routine checks for a well carrier may not be. Ask your insurer or the Aarogyasri or Ayushman Bharat desk in writing before booking, and keep the reply.
Can surveillance ever stop?
For a relative who tests negative for the family's known fault, yes, straight away. For a carrier, the checks continue for life, though the gaps may change as the years pass. Some teams adjust the plan in later life, and your team will discuss this with you.
Where do I start if my family has just been told about VHL?
Start with genetic counselling for the person who has the result. The counsellor can arrange testing for relatives and a first round of checks. Call the CION helpline if you are not sure who to approach, and someone will point you to the right clinic.
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)
Medical Oncologist
Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
Medical Oncologist
Medical Oncologist
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Where to find us
Our centres in and around Hyderabad
Addressed by landmark, because that is how this city navigates. One helpline books a consultation at any of these centres, and your team will tell you where counselling and testing take place.
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Sources
- GeneReviews (NCBI) — Von Hippel-Lindau Syndrome
- MedlinePlus Genetics — Von Hippel-Lindau syndrome
- National Cancer Institute — Genetics of Kidney Cancer (Renal Cell Cancer) (PDQ)
- MedlinePlus Genetics — VHL gene
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
Related pages
VHL surveillance from childhood onwardsHow the checks fit into a child's growing yearsKidney surveillance and the 3 cm ruleWhy kidney tumours are watched before they are removedPhaeochromocytoma screening in VHLThe adrenal test, and why it matters before surgeryVHL positive: what happens nextThe first weeks after a positive result
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Not sure which VHL checks are due next?
Bring your latest reports and your family's genetic result. We will help you set out which checks are due and where they can be done. One helpline serves every CION centre.