Medical Oncologist
CION Cancer Clinics
Tested positive for VHL: the next steps, in order | CION Cancer Clinics
A positive VHL result means you carry a fault in a gene that normally keeps certain growths in check. It does not mean you have cancer today. What follows is a baseline set of checks, a lifelong schedule of eye, blood and scan tests, and an offer of testing to your parents, brothers, sisters and children. This page walks through those steps in the order they usually happen. 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
- What does a positive VHL result mean for you?
- Which specialists will be involved in your care?
- What usually happens after a positive VHL result?
- The words you will meet, in plain language
- What to sort out soon, and what can wait
- Four things families say after a VHL result, and what is true
- What this page cannot tell you
- Common questions after a positive VHL result
The short answer
What does a positive VHL result mean for you?
It means you carry a fault in the VHL gene, which normally stops certain growths from forming. Over a lifetime, most carriers develop at least one VHL-related growth, in the eyes, brain, spine, kidneys, adrenal glands or pancreas. Many of these growths are benign. Regular checks are designed to find them while they are small and easy to treat.
What it does not mean
It does not mean you have cancer today. It does not mean you need an operation now. Many carriers feel completely well when they are tested, often because a parent or sibling was diagnosed first. The result tells you where to look, not what you will find.
Why the years matter more than the first week
Nothing about a positive result is an emergency on its own. The value of knowing comes from a steady plan kept up over many years. Families who stay with regular checks tend to have growths found early, when treatment is simpler and keeps more of the kidney, eye or nerve working.
A VHL result is the start of a plan, not a diagnosis of cancer.Who you will see
Which specialists will be involved in your care?
VHL touches several organs, so care is shared between a small team. One person should coordinate it, usually your oncologist or clinical geneticist.
Genetic counsellor
Explains your report, draws the family tree and helps you decide how to tell relatives. They also plan testing for children and discuss family planning.
Eye specialist
A retina specialist examines the back of the eye with dilating drops. Small blood-vessel growths there can often be treated with laser or freezing before they affect sight.
Brain and spine team
MRI scans look for blood-vessel growths in the brain and spinal cord. A neurosurgeon advises if one starts causing symptoms or grows quickly.
Symptoms to report
- New or worsening headaches
- Unsteady walking or clumsiness
- Numbness or weakness in the limbs
Kidney and adrenal team
A urologist watches kidney cysts and tumours on scans. An endocrinologist checks adrenal hormone levels and blood pressure. The pancreas is usually seen on the same abdominal scan.
Not sure whether this applies to you?
Ask an oncologistIn the months ahead
What usually happens after a positive VHL result?
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A counselling appointment to go over the report
The counsellor confirms the variant, explains what it is known to cause, and answers questions. Bring a written family history covering both sides.
-
A baseline round of checks
This usually means an eye examination, a blood or urine test for adrenal hormones, an MRI of the brain and spine, an MRI of the abdomen and a hearing test. It shows what is already there.
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The results are reviewed together
Most people have either nothing or small growths that only need watching. If something needs treatment, the team plans it with the whole picture in view.
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Relatives are offered testing
Parents, brothers, sisters and children can be tested for your exact variant. A family letter from the counsellor makes this easier to explain.
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A repeating schedule is set
Checks then continue at set intervals for life. The timing of each test is agreed with your team and adjusted if anything is found.
On your plan
The words you will meet, in plain language
- Surveillance
- Regular planned checks in someone who feels well, to find growths early. It is watching, not treating.
- Baseline
- The first full round of checks. Every later scan is compared with it.
- Haemangioblastoma
- A benign knot of blood vessels in the brain, spinal cord or retina. It is the most common VHL growth.
- Phaeochromocytoma
- A usually benign adrenal tumour that releases stress hormones and can push blood pressure dangerously high.
- Cascade testing
- Testing relatives one step at a time for the exact variant already found in the family.
- Kidney-sparing treatment
- Removing or destroying only the tumour, not the whole kidney, so kidney function lasts as long as possible.
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Priorities
What to sort out soon, and what can wait
Sort out soon
Can wait for the counsellor
Book the genetic counselling appointment
Deciding when to test young children
Arrange the baseline round of checks
Family planning and pregnancy choices
Tell every treating doctor you carry VHL
Longer-term insurance planning
Report new headaches, vision or hearing changes
Whether to join a research study
Share the result with parents and siblings
Telling cousins and extended family
Commonly believed
Four things families say after a VHL result, and what is true
"I feel fine, so I can skip the checks for now."
VHL growths are often silent until they are large. The point of the checks is to find them before symptoms start, when treatment is smaller and safer.
"A growth on the scan means an operation straight away."
Many VHL growths are simply watched. Kidney tumours, for example, are usually followed on scans and treated only once they pass a set size, to protect kidney function.
"Nobody else in our family has it, so they do not need testing."
Relatives can carry the variant without symptoms. A minority of people are the first in their family to have it, but that can only be known after parents are tested.
"A positive result means my children will have it."
Each child has an even, one in two chance of inheriting the variant. A child who tests negative does not need VHL checks and cannot pass it on.
Being straight with you
What this page cannot tell you
It cannot tell you what your own result means in detail. Different VHL variants carry different patterns, and your family history adds to the picture. What your specific variant means is a question for the counsellor who ordered the test.
It cannot set your schedule
The ages at which checks start, and how often they repeat, are agreed with your team. They depend on your age, what the baseline shows and what has happened in your family. Published schedules are a starting point, and doctors adjust them for each person.
Who this does not apply to
This page is for people with a confirmed VHL variant. If your report says variant of uncertain significance, it is not a positive result, and the plan may be very different. If you have a VHL change found only in a kidney tumour, that is a tumour finding rather than an inherited one, and it does not mean relatives are at risk.
Studies of VHL in Indian families are still small. Much of what we know comes from families abroad.Questions we are asked
Common questions after a positive VHL result
How soon should I have my first checks?
There is usually no need to rush in the first days, but the baseline round should not be put off for long. Book the counselling appointment first, and plan the checks from there. If you already have symptoms such as headaches or vision changes, tell your doctor now.
Is there a medicine for VHL?
A tablet called belzutifan blocks the signal a faulty VHL gene switches on. It has been approved abroad for some VHL kidney, brain and pancreas tumours that do not need immediate surgery. Availability and cost in India vary, so ask your oncologist whether it is relevant to you.
Will I need to have a kidney removed?
Rarely, if checks are kept up. VHL kidney tumours are usually small when found and treated by removing or destroying only the tumour. Because new tumours can appear over the years, the aim is always to save as much kidney as possible.
Should my children be tested now?
Usually yes, and earlier than for most adult cancer genes. VHL checks, especially of the eyes, start in childhood, so knowing early helps. A child who tests negative can skip the checks entirely. Your counsellor will advise on timing.
Can I still have children safely?
Yes. Many carriers have children. Before pregnancy, an adrenal tumour should be ruled out and brain and spine growths reviewed, since pregnancy can affect them. Options that avoid passing on the variant can also be discussed with your counsellor.
What if my parents test negative?
Then you are likely the first in your family to carry the variant. Your brothers and sisters are then at low risk, but your children still have a one in two chance. Sometimes the variant is present in only some of a parent's cells, which a counsellor can explain.
How do I tell my brothers and sisters?
Many families find a written letter from the counsellor easiest, as it explains the variant and the test clearly. Siblings can bring it to their own doctor. It is their choice whether to test, but they deserve the chance to decide.
Can checks be done closer to home in the districts?
Some can. Blood tests and blood pressure checks can often be done locally. MRI scans and eye examinations are best done at one centre, so each scan can be compared with the last. Grouping checks into one visit saves repeated travel to Hyderabad.
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
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Sources
- GeneReviews (NCBI Bookshelf) — Von Hippel-Lindau Syndrome
- MedlinePlus Genetics — Von Hippel-Lindau syndrome
- National Cancer Institute — Genetics of Kidney (Renal Cell) Cancer (PDQ) - Health Professional Version
- National Cancer Institute — Genetic Testing for Inherited Cancer Susceptibility Syndromes
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.
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We can help you understand the report, arrange the first round of checks and plan testing for your family. One helpline serves every CION centre.