Medical Oncologist
CION Cancer Clinics
A positive Wilms tumour gene result: what happens next | CION Cancer Clinics
A positive result means your child has a higher chance of a kidney tumour in early childhood. It does not mean they have cancer. A plan of regular tummy ultrasound scans begins, with extra checks depending on the gene. The scans stop once the risk years pass. This page explains the plan, what to watch for at home, and what the result means for the rest of the family. 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
- My child has a Wilms tumour gene fault. What happens now?
- What checks will my child need?
- What happens in the first weeks after the result?
- The terms on the plan, in plain language
- What the result changes, and what it does not
- Four things parents tell us, and what is actually true
- What this page cannot tell you
- Common questions after a positive result
The short answer
My child has a Wilms tumour gene fault. What happens now?
Your child is not ill because of this result. It means they have a higher chance of a kidney tumour in early childhood, so a plan of regular checks begins. Most of that plan is simple ultrasound scans of the tummy, arranged by a paediatric team who will explain each step.
The first conversation
A genetic counsellor or clinical geneticist goes through the result with you. They confirm exactly which gene and which syndrome is involved, because that decides everything that follows. They also explain what the result means for brothers, sisters and parents, and answer the question almost every parent asks: did we cause this? You did not. Nothing you did during pregnancy caused the fault.
Why the plan has a finish line
Wilms tumour is a cancer of young children. The risk is highest in the first few years and falls sharply after that. So the scans are intense for a while and then stop. Knowing there is an end point helps many families cope with the early years.
Small things that help
Keep every report in one folder, in date order. Put the next scan date in your phone as soon as it is booked. Tell your child's school or day-care only what they need to know. Many parents say the routine feels far less frightening once the first few scans are behind them.
Regular scans are designed to find a tumour while it is small, when treatment is simpler and more of the kidney can be saved.What the plan includes
What checks will my child need?
The exact plan depends on the gene and syndrome. These are the parts most families meet.
Kidney ultrasound scans
The core of the plan. Published guidance commonly advises a scan about every three months through early childhood. The scan is painless, needs no injection and takes a few minutes. In Beckwith-Wiedemann syndrome the whole tummy, including the liver, is usually scanned in the early years.
Blood tests for a liver tumour
Children with Beckwith-Wiedemann syndrome also have a raised chance of a liver tumour called hepatoblastoma in infancy. A blood test for a marker called alpha-fetoprotein is often added in the early years.
Kidney function checks
WT1 faults can affect how well the kidneys filter.
Usually includes
- Urine tests for protein
- Blood pressure checks
- Blood tests of kidney function
Other specialists
Depending on the syndrome, an eye doctor, a child development team, a urologist or a hormone specialist may join. In some WT1 conditions, undeveloped sex glands carry a cancer risk of their own, and removing them may be discussed.
Not sure whether this applies to you?
Ask an oncologistStep by step
What happens in the first weeks after the result?
Confirm the result and the syndrome
The genetics team checks the report, examines your child and may request another sample. This settles which schedule applies.
Book the first scan
A baseline kidney ultrasound is arranged soon. It gives the team a clear picture to compare every later scan against.
Agree where scans will happen
Families from districts can often have scans done closer to home, with results sent to the child's specialist. Ask for a centre that scans young children regularly.
Plan testing for the family
Parents, and young brothers and sisters, are offered tests for the same change. Siblings who test negative usually need no scans.
Words you will hear
The terms on the plan, in plain language
- Surveillance
- Regular planned checks in a child who is well, to find any tumour early.
- Renal ultrasound
- A scan of the kidneys using sound waves. There is no radiation and no needle.
- Alpha-fetoprotein
- A protein measured in the blood. High levels in a young child can be an early sign of a liver tumour.
- Nephrogenic rests
- Small patches of immature kidney cells. They are watched because a few can grow into a tumour.
- Nephron-sparing surgery
- An operation that removes a tumour while keeping as much healthy kidney as possible.
- Proteinuria
- Protein leaking into the urine. It is an early sign that the kidney filters are under strain.
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Side by side
What the result changes, and what it does not
What changes
What stays the same
Regular scans through early childhood
Normal food, play, school and vaccines
Kidney checks may continue for longer
Your child is well and needs no treatment now
Relatives are offered testing
No special diet or medicine lowers the risk
Any tummy lump is checked quickly
Ordinary childhood illnesses are treated as usual
Commonly believed
Four things parents tell us, and what is actually true
"Something we did in pregnancy caused this."
No. Gene faults and switching errors arise in the egg, the sperm or the earliest cells, and nothing a parent ate, did or avoided causes them.
"So many scans must be harmful."
Ultrasound uses sound waves, not radiation. Repeated scans are considered safe for young children, which is exactly why they are used for this kind of checking.
"If the scans are clear for a year, we can stop early."
Clear scans are good news, but the risk continues through early childhood. Stopping early leaves gaps in exactly the years the plan was built to cover. Agree any change with the specialist.
"A tumour found on a scan means the plan failed."
Finding a small tumour is what the plan is for. Tumours found on regular scans tend to be smaller, and more of the kidney can often be kept.
Being straight with you
What this page cannot tell you
It cannot tell you your child's exact schedule. Guidance differs by syndrome and by molecular subtype, and specialists adjust it to the child. What your child's specific result means is a question for the counsellor who ordered the test, working with the paediatric oncologist who plans the scans.
It cannot predict whether a tumour will appear
Risk figures describe groups of children, not one child. Some syndromes carry a high chance and others a modest one, and within each group most outcomes are uncertain until the risk years have passed. Studies behind some of the rarer genes are small.
Who this does not apply to
If the fault was found only in a removed tumour, it was not inherited and the steps on this page do not apply. Nor do they apply to a child who already has Wilms tumour and is in treatment. Their follow-up, including scans of the other kidney, is planned by the treating team. Tumour testing to guide treatment is covered on our targeted therapy pages. This page is also not for adults who carry a fault. Their own tumour risk is low, and their questions are usually about kidneys and family planning.
Questions we are asked
Common questions after a positive result
How long will my child need scans?
Through early childhood, usually until around the age most children start primary school or a little after. Published guidance differs slightly between syndromes, and a few conditions such as WAGR may need longer. Your child's specialist will give you a clear end date.
What should we watch for between scans?
A lump or swelling in the tummy, a tummy that suddenly looks bigger, blood in the urine, or unexplained fever and tiredness. If you notice any of these, contact your child's doctor promptly and do not wait for the next scan.
Can the scans be done near our home?
Often, yes. Any good ultrasound centre that scans young children can do them, provided the reports go to the specialist planning your child's care. Keep every report in one folder and bring it to each review.
Will my child need treatment now?
No. A gene fault on its own is not treated. Your child needs checks, not medicine. Treatment is only considered if a scan shows a tumour, and then it is planned by a paediatric oncology team.
Does this affect our other children?
It might. If a parent carries the same fault, each brother or sister could have inherited it. If the fault was new in your child, siblings are usually at low risk. Testing tells you which children need scans.
What does this mean when my child grows up?
The Wilms tumour risk largely passes with early childhood. Depending on the gene, kidney function and blood pressure may be checked into adult life. As an adult, your child can talk to a counsellor about the chance of passing the fault on.
Is there anything we can do to lower the risk?
No diet, supplement or medicine is known to lower it. What helps is keeping every scan appointment and acting quickly on any new symptom. Those two things are what make early detection work.
Who do we contact if we have questions between reviews?
Your child's paediatric team or genetic counsellor should give you a contact. Write questions down as they come and bring them to each review. If you are unsure who to call, the CION helpline can point you to the right person.
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
- National Cancer Institute — Wilms Tumor and Other Childhood Kidney Tumors Treatment (PDQ) – Health Professional Version
- GeneReviews (NCBI) — Beckwith-Wiedemann Syndrome
- MedlinePlus Genetics — Denys-Drash syndrome
- MedlinePlus Genetics — WAGR 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
Related pages
Surveillance for Wilms tumour gene carriersThe schedule of checks, condition by conditionAbdominal ultrasound screening in predisposed childrenWhat happens at each scanTesting the family for the Wilms tumour genesWhich brothers, sisters and parents to testBeckwith-Wiedemann syndrome and tumour screeningExtra checks when the syndrome is BWS
Talk to us
Just received a positive result for your child?
Tell us which gene the report names and where your child is being seen. We will help you reach a genetics and paediatric team who can set out the plan. One helpline serves every CION centre.