Medical Oncologist
CION Cancer Clinics
Surveillance programmes for children with an inherited cancer fault | CION Cancer Clinics
Surveillance means regular, planned checks for a child who carries an inherited cancer fault but is well. The aim is to find a tumour early, when it is smaller and easier to treat. What the checks involve depends on the syndrome. Some children need eye examinations, some need ultrasound scans, and some need MRI scans of the whole body. At CION Cancer Clinics, our oncologists plan screening and care for families with an inherited cancer syndrome, explained in plain words.
NG
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
17+specialists on panel
15,000+patients treated
35+centres across Telangana & AP
4.8★ / 800+Google rating
On this page
- What is a surveillance programme for a child?
- What do the checks look like for different syndromes?
- What does a year of surveillance usually look like?
- What do the words in a surveillance plan mean?
- What this page cannot tell you
- Four things parents tell us, and what is actually true
- Common questions about surveillance for children
The short answer
What is a surveillance programme for a child?
It is a written plan of regular checks for a child who carries an inherited cancer fault but is well. The checks look for a tumour before it causes symptoms, when it is usually smaller and easier to treat. The plan is built around the specific syndrome, so two predisposed children can have very different timetables.
Why it is planned around the syndrome
Each syndrome raises the risk of particular tumours at particular ages. A child with a retinoblastoma fault needs eye checks in the early years, while a child with a fault linked to kidney tumours needs belly ultrasound. The plan follows the tumours that syndrome is known for, and it changes as the child grows.
What surveillance can and cannot do
It cannot stop a tumour from forming. What it can do is find one early. In Li-Fraumeni families, studies suggest children on a structured programme have tumours found sooner and do better as a result. For some rarer syndromes the evidence is thinner, and the studies so far are small.
Surveillance is for children who are well. A child with symptoms needs to be seen, whatever the timetable says.It depends on the gene
What do the checks look like for different syndromes?
These are broad outlines. Your child's own plan will be written by the team that knows their exact result.
Li-Fraumeni syndrome
Linked to the TP53 gene. The plan usually combines several kinds of check.
- A whole-body MRI scan once a year
- A separate brain MRI
- Belly ultrasound every few months
- Blood tests for adrenal gland hormones
Hereditary retinoblastoma
Frequent eye examinations from birth, often under a short anaesthetic in babies so the doctor can see the whole retina. They become less frequent as the child gets older and the risk of new eye tumours falls.
Kidney and liver tumour risk
Children with certain overgrowth conditions or a WT1 fault have belly ultrasound every few months in early childhood. Some also have a blood test that can flag a liver tumour in the youngest children.
DICER1 and other rarer syndromes
DICER1 plans usually include chest imaging in early childhood and belly and pelvic ultrasound. Other rare syndromes have their own plans, and some need very few checks in childhood at all.
Not sure whether this applies to you?
Ask an oncologistHow it runs
What does a year of surveillance usually look like?
-
The plan is agreed and written down
The oncologist, counsellor and parents agree which checks, how often and where. Ask for the plan on paper, so any doctor your child sees can read it.
-
Short visits through the year
Ultrasound scans, blood tests and a physical examination are often grouped into one visit every few months. Families from districts can ask for these to fall on the same day.
-
The longer scan once a year
A whole-body MRI can take close to an hour. Young children usually need sedation or a short general anaesthetic to stay still, so the day includes fasting and recovery time.
-
Results are reviewed together
A radiologist and the oncologist read the scans. Most results are clear. If something needs a closer look, the team explains what and why before any further test.
-
The plan is updated as the child grows
Some checks stop, others start. The teenage years usually bring a handover towards adult care.
!
Symptoms do not wait for the next scan
A clear scan last month does not cover a new symptom today. If your child has a headache that wakes them or comes with vomiting in the morning, a new lump or swelling, bone pain that keeps them awake, a white glow in the pupil in a photograph, or new weakness in an arm or a leg, contact the surveillance team the same day. If the child is very unwell, go to the nearest emergency department and say they carry an inherited cancer fault.
Leave a number, we will call you
One field. No form to fill in, and no charge for the call.
In plain language
What do the words in a surveillance plan mean?
- Surveillance
- Regular planned checks in someone who is well, looking for a tumour before it causes symptoms.
- Whole-body MRI
- A scan of the whole body using magnets and radio waves. It uses no X-rays, so it is safe to repeat.
- Sedation
- Medicine that makes a child sleepy and still for a scan. Deeper sedation is a short general anaesthetic.
- Incidental finding
- Something seen on a scan that was not being looked for. Most turn out to be harmless.
- False alarm
- A finding that needs a second look and turns out to be nothing. Doctors call this a false positive.
- Toronto protocol
- A widely used surveillance plan for Li-Fraumeni syndrome, named after the city where it was developed.
Being straight with you
What this page cannot tell you
It cannot give you your child's plan. Which scans, how often and from what age depend on the exact syndrome, the exact variant and the family history. What your specific variant means is a question for the counsellor who ordered the test, and the plan is written by your child's team.
It cannot promise that every tumour will be found early
Surveillance improves the odds. It does not remove the risk, and a tumour can still appear between two clear scans. That is why symptoms always matter, and why missed visits should be rebooked quickly rather than skipped.
Who this does not apply to
Children who carry a fault that raises risk only in adult life, such as BRCA1 or BRCA2, do not need childhood surveillance. Children with a variant of uncertain significance usually do not either. In Telangana, whole-body MRI is not available in every district, so ask where your child's scans can be done before the plan is fixed.
Commonly believed
Four things parents tell us, and what is actually true
"A clear scan means my child is safe until the next one."
A clear scan is good news about that day. Tumours can still appear between scans, so a new symptom always deserves a call to the team, whatever the date of the last check.
"A CT scan would be quicker and just as good."
CT uses X-rays. For some syndromes, including Li-Fraumeni, repeated radiation may itself raise cancer risk, which is why plans lean on MRI and ultrasound. CT is still used when a doctor needs an urgent answer.
"She looks healthy, so we can stop the checks."
Carriers look healthy by definition. The checks exist precisely because a tumour can grow for a while without any outward sign. Stopping should be a decision made with the team.
"We live far away, so there is no point unless we manage every visit."
Some checks are far better than none. Tell the team about travel, cost and school, and they can often group visits or move simpler tests closer to home.
Questions we are asked
Common questions about surveillance for children
When does surveillance start?
It depends on the syndrome. For some, such as hereditary retinoblastoma and Li-Fraumeni syndrome, checks start soon after the result, even in babies. For others they begin later in childhood. Your child's team will set a start date that matches when the tumours linked to that syndrome tend to appear.
Does my child need an anaesthetic for every MRI?
Not always. Babies and young children usually need sedation or a short anaesthetic to stay still. Many older children manage while awake, especially with practice, a parent nearby and headphones. Ask whether the scanning centre offers a practice visit first.
What happens if a scan shows something?
Most findings are harmless. The team usually arranges a closer look, such as a repeat scan or a different test, before deciding anything. If a tumour is found, it is often small, and treatment is planned by a paediatric oncology team.
Can the scans be done in our district?
Ultrasound and blood tests often can. Whole-body MRI and anaesthetic eye examinations usually need a larger centre. Ask the team which checks can be done locally and which need a trip to Hyderabad, and try to group the longer visits.
Who pays for surveillance?
Costs vary widely by scan and centre. Whether Aarogyasri, Ayushman Bharat or private insurance covers scans for a child who is currently well is not straightforward, so check with the scheme desk or insurer before you assume. Ask the team for a written estimate for the year.
How do we cope with the worry before each scan?
Many families find the days before a scan the hardest. Keeping the routine normal, planning something pleasant after the scan and asking when results will come all help. If the worry starts to take over, a psycho-oncologist or counsellor can help.
Does surveillance ever stop?
For some syndromes certain checks stop as the risk of particular tumours falls, such as eye checks in retinoblastoma. For others, surveillance continues into adult life and moves to an adult team. It should be changed only after talking with your child's doctors.
Where do we start?
Ask the team that gave your child's result for a written surveillance plan. Check where each test can be done and what it will cost. If you are unsure who to approach, call the CION helpline 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
Want a specific doctor for your case? Mention them when booking.
Book Free ConsultationBook an appointment with our specialist
Share your name and number — we'll call you back within 30 minutes to schedule your consultation.
Patient stories
Hear it from people we have treated
Every story is a video, in the patient's own words. Nothing here is a written testimonial.
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.
Warangal
Vizag
Sources
- GeneReviews (NCBI) — Li-Fraumeni Syndrome
- GeneReviews (NCBI) — Retinoblastoma
- MedlinePlus Genetics — Li-Fraumeni syndrome
- 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.
Keep reading
Related pages
School, sport and growing up with a predispositionFitting the scan timetable around ordinary lifeTransition from paediatric to adult genetics careWhat happens to the plan in the late teensShould healthy siblings be tested?Whether brothers and sisters need a plan tooGenetic testing after a child's cancer diagnosisHow the fault behind the plan was found
Talk to us
Need help setting up your child's surveillance plan?
Tell us your child's syndrome and where you live. We will help you work out which checks are needed and where they can be done. One helpline serves every CION centre.