Medical Oncologist
CION Cancer Clinics
From children's to adult genetics care: planning the move | CION Cancer Clinics
A child with an inherited cancer risk usually moves to adult genetics care in the late teens. The gene fault stays the same, but the screening plan, the person who consents and the questions that matter all change. This page explains how a planned transition works, what the handover should contain, and why the first year in adult care is when checks are most often missed. 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
- When does a child's genetics care move to adult services?
- What actually changes when a child becomes an adult patient?
- How a planned transition usually unfolds
- The terms used during transition, in plain language
- Children's genetics care and adult genetics care compared
- What this page cannot tell you
- Four things families assume about growing up with a gene fault
- Common questions about moving to adult genetics care
The short answer
When does a child's genetics care move to adult services?
Usually in the late teenage years, and it should be planned rather than sudden. The gene fault does not change when a child grows up. What changes is who is responsible for the care, which cancers the screening looks for, and who makes the decisions.
Why this move is harder than it sounds
For years a parent has booked the scans, kept the reports and asked the questions. The young person may have been tested before they could talk, and may never have heard their result explained to them directly. Then one day the letters start arriving in their own name. This is the point at which many young people quietly stop coming, often while they are away at college or starting a first job.
What a good transition looks like
It starts early, in small steps. The teenager is seen alone for part of each visit. The paediatric team writes a clear summary for the adult team. The young person has a fresh counselling session as an adult, about their own result, in their own words. Nobody is simply handed a new hospital address and wished luck.
The fault stays the same for life. The plan built around it should change as the person does.Four things that shift
What actually changes when a child becomes an adult patient?
The diagnosis is the same. Almost everything around it moves.
Who is in charge
Consent passes from the parent to the young person. Adult doctors speak to the patient first and involve the family only with their agreement. Parents often find this the hardest part, and some families need help talking it through.
What is screened
Childhood screening looks for childhood tumours. Adult screening adds the cancers that belong to adult life for that particular syndrome. Some childhood checks stop, and new ones start.
Often added in adult life
- Breast imaging for women in some syndromes
- Bowel or stomach checks by scope
- Skin, thyroid or kidney checks, by syndrome
What the counsellor talks about
Adult counselling covers topics that were never raised with a child: passing the fault to their own children, choices before a pregnancy, telling a future spouse, and insurance and employment questions.
Where the care happens
In India the children's clinic and the adult clinic are often in different hospitals, sometimes in different cities. Records, scan images and the original test report need to travel with the patient, not stay in a file cupboard.
Not sure whether this applies to you?
Ask an oncologistStep by step
How a planned transition usually unfolds
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Early teens: the conversation begins
The paediatric team mentions that adult care will come one day. The young person is told the name of their syndrome and why the scans happen, in language they can repeat to a friend.
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Mid teens: time alone with the doctor
Part of each visit happens without a parent in the room. The teenager practises asking their own questions and reporting their own symptoms.
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Late teens: counselling in their own right
A genetic counsellor explains the result again, this time to the young person as the owner of it. Questions about marriage, children and insurance are welcome here.
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The handover
A written summary goes to the adult team. It lists the gene, the exact variant, past scans, past treatment and the screening plan going forward. The young person keeps a copy.
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The first adult appointment, and the year after
Someone checks that the first adult visit actually happened and that no scan fell between the two services. That first year is when gaps usually appear.
Words you will hear
The terms used during transition, in plain language
- Transition
- The gradual process of preparing a young person to manage their own care. It takes years, not a single visit.
- Transfer
- The single moment the file moves from the children's team to the adult team. A transfer without a transition is where people get lost.
- Handover summary
- A letter written for the adult team. It should name the gene, the variant, past treatment and what is due next.
- Surveillance plan
- The schedule of scans and checks designed for that syndrome. It is rewritten for adult life, not simply continued.
- Germline result
- A result about a fault present in every cell from birth, which can be passed to children. This is the result the young person now owns.
- Late effects
- Health problems that appear years after childhood cancer treatment. Survivors need these watched alongside the inherited risk.
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Side by side
Children's genetics care and adult genetics care compared
Children's care
Adult care
The parent gives consent and holds the reports
The young person consents and owns the result
Screening targets childhood tumours
Screening adds the adult cancers for that syndrome
Appointments are booked for the child
The patient is expected to book and attend
Family planning is not discussed
Pregnancy choices and testing of future children are discussed
The team knows the family well
A new team relies on the handover summary
Being straight with you
What this page cannot tell you
It cannot tell you which adult checks your son or daughter needs, or at what age each one should begin. That depends on the exact syndrome, the exact variant, what treatment they had as a child and what has happened in the wider family. The adult genetics team works that out from the handover summary and a fresh history.
It cannot explain a report you are holding
If the young person was tested years ago, the laboratory may since have reclassified the variant. What your specific variant means is a question for the counsellor who ordered the test, or the adult team who now looks after the result. Ask whether the report should be reviewed as part of the handover.
Who this does not apply to
Children who had cancer without any inherited fault being found do not need an adult genetics clinic. They may still need long-term follow-up for the effects of their treatment, which is a separate service. If you are unsure which group your child falls into, ask the paediatric oncologist before the last children's appointment.
Commonly believed
Four things families assume about growing up with a gene fault
"The scans were clear for years, so adult checks are not needed."
Clear childhood scans are good news about childhood. Many syndromes carry risks that only appear in adult life, and those are exactly the risks the adult plan is built to catch early.
"The parents already know everything, so the young person does not need counselling."
The parents were counselled as parents. The young person needs the result explained as its owner, including what it means for their own children one day. That is a different conversation.
"Talking about it before marriage will ruin the match."
This fear is real and common. A counsellor can help the young person decide when and how to share it, and explain that choices exist for having children without passing the fault on.
"Adult doctors will just repeat what the children's doctors did."
The adult plan often looks quite different. Some scans stop, new ones start, and the timing is set around adult cancers. Expect changes and ask for the reasons behind each one.
Questions we are asked
Common questions about moving to adult genetics care
At what age does the move to adult care happen?
Most services plan the transfer somewhere in the late teens, once the young person has finished school exams or is settling into college. The exact point is flexible. Readiness matters more than a birthday, and a young person who is unwell or mid-treatment may stay with the children's team a little longer.
Can a parent still come to adult appointments?
Yes, if the young person wants them there. Adult doctors will usually ask the patient first and may see them alone for part of the visit. Many families find a middle path where the parent joins for the plan and steps out for private questions.
What should be in the handover summary?
The gene and the exact variant, a copy of the original laboratory report, every past scan and its result, any cancer treatment given, and the surveillance plan going forward. Keep your own copy, both on paper and on the phone, because files do not always travel between hospitals.
Does the young person need to be tested again as an adult?
Usually not. A germline result does not change with age. The adult team may ask the laboratory to confirm the original report or review the variant's classification, especially if the test was done many years ago using older methods.
What if my son is moving to another city for studies?
Plan the transfer to a clinic near where he will live, not near home. Ask the children's team for a referral to a named adult service in that city, and give him the handover summary to carry. Screening that is missed during college years is the most common gap we see.
Does Aarogyasri or Ayushman Bharat cover adult surveillance?
Coverage depends on the scheme, the hospital and the specific test, and it is not the same for children and adults. Some imaging and procedures may be covered while genetic counselling often is not. Ask the hospital's scheme desk before each new test rather than assuming it continues.
Should my daughter tell her future husband's family?
That is her decision, and it is a common worry in Telangana families. A counsellor can help her plan what to say and when. Many couples find it easier once they learn that choices exist for having children without passing the fault on.
Who do we contact if the handover seems stuck?
Start with the paediatric team, since the referral comes from them. If months pass without an adult appointment, call the CION helpline and describe the syndrome and the last scan date. Someone will tell you which clinic to approach and what to bring.
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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Sources
- National Cancer Institute — Cancer in Children and Adolescents
- Children's Oncology Group — Long-Term Follow-Up Guidelines
- MedlinePlus Genetics — What is informed consent?
- National Cancer Institute — Late Effects of Treatment for Childhood Cancer (PDQ) – Patient Version
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
When a child should decide for themselvesWhich tests can wait until your child can chooseSurveillance programmes for predisposed childrenThe childhood checks that come before the adult planSchool, sport and growing up with a predispositionEveryday life for a teenager with a gene faultExplaining a genetic result to a childThe earlier conversations that make transition easier
Talk to us
Is your child's handover to adult care stalled?
Tell us the syndrome, the last scan date and where your child now lives. We will help you find the right adult clinic and explain what to take along. One helpline serves every CION centre.