Medical Oncologist
CION Cancer Clinics
How to talk to your children about FAP | CION Cancer Clinics
Tell children about FAP early, honestly and in small steps, before any test or bowel check. FAP is one of the few inherited conditions where children are usually tested, because checks begin in late childhood or the early teens. This page explains what children can understand at each age, how to prepare for the conversation, and simple answers to the questions they most often ask. 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 and how should we tell our children about FAP?
- What can a child understand at each age?
- How can a family prepare for the conversation?
- How can we explain the hard words simply?
- What children often ask, and one way to answer
- What this page cannot tell you
- Four things parents tell us, and what is actually true
- Common questions about telling children about FAP
The short answer
When and how should we tell our children about FAP?
Tell them early, honestly and in small steps, well before any test or bowel check. Children cope better with simple truth than with a secret they sense but cannot name. The conversation is not one talk. It grows as your child grows.
Why FAP is different from most inherited conditions
For many inherited cancer risks, testing waits until a child is an adult and can decide for themselves. FAP is one of the exceptions. Bowel checks begin in late childhood or the early teens, so children are usually tested before then. That means they need to understand, in their own words, why they are having a blood test and why a doctor wants to look inside their bowel.
Why silence rarely protects
Children notice hospital visits, whispered calls and a parent's worry. Without an explanation, they often imagine something worse, or decide it is their fault. A child who hears the facts from a parent first usually handles them far better than one who overhears a relative.
You do not need every answer before you begin. Saying "I will find out and tell you" is a good answer.By age
What can a child understand at each age?
Every child is different, so treat these as a rough guide. Follow your child's questions and give a little more each time.
Young children
Keep it short and concrete. Some families have tummies that need extra check-ups with a special doctor, and those check-ups keep us healthy. Answer only what is asked.
Primary school
A gene is like an instruction in the body's recipe book. In our family, one instruction has a spelling mistake that can make small bumps grow in the tummy. Doctors find them early and deal with them.
Teenagers
Teenagers can take the full picture and should share in decisions.
- How FAP passes from parent to child
- What colonoscopy and surgery involve
- Why checks matter even when they feel well
- Who they want to tell, and when
Young adults
Talk about taking charge of their own checks, choosing a partner, and what FAP means for their future children. Let them lead these conversations with their own doctors.
Not sure whether this applies to you?
Ask an oncologistGetting ready
How can a family prepare for the conversation?
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Get clear on the facts yourselves
Ask your genetic counsellor to explain the family's fault, when checks start and what testing involves. Write down the answers in your own words, in Telugu if that is easier.
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Agree between parents first
Children feel it when adults disagree. Decide together what you will say, who will say it and how you will answer the hard questions.
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Choose a calm moment
Avoid exam weeks, festivals and the night before a hospital visit. A quiet walk or a car journey often feels easier than a formal sit-down.
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Explain, then check what they heard
Use short sentences. Ask your child to tell you back what they understood, and gently correct anything that came out frightening or wrong.
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Keep the door open
Tell them they can ask again any time. Return to it after the test, before each check and whenever something changes in the family.
Words for children
How can we explain the hard words simply?
- Gene
- An instruction that tells the body how to grow and repair itself. We get one copy from each parent.
- Gene fault
- A spelling mistake in one instruction. It is nobody's fault, and it was there from before you were born.
- Polyp
- A small bump inside the tummy tube. Doctors look for them early so they never get the chance to cause trouble.
- Genetic test
- A small blood sample that shows whether you have the family's spelling mistake or not.
- Colonoscopy
- A check where a doctor looks inside the tummy tube with a thin camera while you are asleep or very drowsy.
- Genetic counsellor
- A person whose job is to explain family genes and answer your questions, including the awkward ones.
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Side by side
What children often ask, and one way to answer
Your child asks
You might say
Did I do something wrong?
No. Nobody chooses their genes, and nothing you did caused this.
Will I get sick like grandfather?
Grandfather was never checked. You will be, and that changes things.
Will the check hurt?
You will be asleep or drowsy, and we will be right there.
Does my sister have it too?
Each of you has your own test and your own answer.
Can I tell my friends?
You can choose who to tell. We can practise what to say.
Being straight with you
What this page cannot tell you
It cannot tell you the right words for your child. You know their temperament, what frightens them and how they take news. A genetic counsellor who meets your family can help you shape the conversation, and can talk to your child directly if that would help.
It cannot decide the timing of the test
When a child is tested depends on the family's fault, when checks would begin and sometimes on the child's own wishes. That is a decision for you, your child and your counsellor together. What a specific result means is a question for the counsellor who ordered the test.
Who this does not apply to
If the parent in your family has tested negative for the known APC fault, your children cannot inherit it from that parent and do not need this conversation about FAP. This page also does not apply to inherited conditions where testing usually waits until adulthood. For those, the advice is different.
Many parents feel guilt about passing on a gene fault. It is common, it is not deserved, and it is worth talking about with a counsellor.Commonly believed
Four things parents tell us, and what is actually true
"She is too young to understand anything about this."
Even young children can understand a simple, true explanation. What they struggle with is a family worry that nobody will explain.
"If we do not tell him, he will not worry."
Children usually sense that something is wrong. Without the facts, many fill the gap with fears that are worse than the truth.
"Testing a child is unfair. We should wait until adulthood."
For most adult cancer risks, waiting is right. In FAP, polyps can start in the teenage years, so waiting can mean missing the time when checks help most.
"The parent who passed it on is to blame."
Nobody chooses the genes they carry or pass on. Blame within the family makes it harder for children to talk openly and harder for relatives to come forward for testing.
Questions we are asked
Common questions about telling children about FAP
At what age should my child be tested for FAP?
Most families test around the age bowel checks would begin, in late childhood or the early teens. Some test earlier, for example if the family wants to know before other decisions are made. Your genetic counsellor will talk through the timing with you and your child.
Should we tell our child before the blood test?
Yes. Children should know why the test is being done, in words suited to their age. Older children and teenagers should be asked for their agreement too. A test done without any explanation can damage trust at exactly the time you most need it.
What if one child has the fault and another does not?
This is common and it can be hard on both. The child with the fault may feel singled out, and the other may feel guilty for being spared. Talk to each child separately first, and keep routines fair. A counsellor can help the family through this.
How do I deal with my own guilt?
Guilt is one of the most common feelings parents describe. You did not choose your genes, and you could not have known. Talking to a counsellor, or to another parent in the same situation, often helps. Children usually take their cue from how the adults around them cope.
Should grandparents and relatives be told?
Relatives who may carry the same fault need to know so they can be tested. How much to say to others is your choice. In joint families, agree what will be said in front of the children, so they hear one consistent story.
Can the counsellor talk to my child directly?
Yes. Many counsellors are used to speaking with children and teenagers, with or without parents in the room. This can be especially helpful for teenagers who find it easier to ask questions of someone outside the family. Ask whether counselling in Telugu is available.
What if my teenager refuses the test?
Listen to the reason first. Fear of needles, of the result or of being different are all common. A counsellor can meet them alone and explain what testing changes. If a teenager still refuses, the bowel team may suggest starting checks anyway until they are ready.
Where do we start?
Start with your own genetic counsellor, or ask your bowel specialist to refer you. Bring the family's genetic report and a list of your children's names and ages. Call the CION helpline if you are not sure who to approach, and someone will guide you.
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
- GeneReviews (NCBI) — APC-Associated Polyposis Conditions
- National Cancer Institute — Genetic Testing for Inherited Cancer Susceptibility Syndromes
- NHS — Predictive genetic tests for cancer risk genes
- MedlinePlus Genetics — Familial adenomatous polyposis
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 screening should start in an FAP familyThe age children's bowel checks beginTesting the family for APCHow brothers, sisters and children are testedLiving with FAP through school and workPractical help once your child knowsFamilial adenomatous polyposis explainedThe facts to get clear on before you talk
Talk to us
Not sure how to begin this conversation?
Tell us your children's ages and what they already know. We will arrange a genetic counsellor who can help you plan the talk, or speak with your child directly. One helpline serves every CION centre.