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Children of a retinoblastoma survivor: risk, testing and eye checks | CION Cancer Clinics
If you had retinoblastoma as a child, the risk to your own children depends on which kind you had. With the inherited kind, each child has a one in two chance of carrying the gene fault and needs eye checks from birth. With the other kind, the risk is low. This page explains how a test tells them apart, and what happens from pregnancy to school age. 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
- Are the children of a retinoblastoma survivor at risk?
- How does the survivor's history change the risk to their children?
- What happens from planning a pregnancy to school age?
- The words you will meet, in plain language
- What the baby's result changes
- What this page cannot tell you
- Four things survivors tell us, and what is actually true
- Common questions from survivors and their partners
The short answer
Are the children of a retinoblastoma survivor at risk?
It depends on whether the survivor had the inherited kind of retinoblastoma. If they did, each child has a one in two chance of inheriting the gene fault, and needs eye checks from birth until a test shows otherwise. If they did not, the risk to their children is very low. Only a genetic test can say which kind it was.
Two kinds of retinoblastoma
Retinoblastoma is an eye cancer of young children, caused by faults in a gene called RB1. In the inherited kind, one faulty copy is present in every cell from birth, including the egg or sperm cells. That is how it passes to the next generation. In the other kind, both faults happened only inside one eye, and nothing can be passed on.
Why testing before pregnancy helps
If the survivor's exact gene fault is known before a baby arrives, the baby can be tested for that one fault at birth. A negative result ends the worry and the eye checks. A positive result means checks start early, when tumours are smallest and easiest to treat.
Finding the survivor's gene fault first is what makes every later step simpler.Your own history
How does the survivor's history change the risk to their children?
The survivor's own history and test result sort families into four broad groups.
Both eyes were affected
This is almost always the inherited kind. Each child has a one in two chance of inheriting the fault. Testing the survivor first finds the exact fault, so the baby can be tested quickly.
Before pregnancy
- Genetic counselling for the survivor
- A blood test to find the exact fault
- A plan for the baby's first eye check
One eye, fault found in the blood
Some survivors with one affected eye turn out to have the inherited kind. If the blood test finds an RB1 fault, the risk to children is the same as for a survivor with both eyes affected.
One eye, no fault found in the blood
Most of these survivors have the kind that cannot be passed on. The risk to children is low, though not always zero, because a fault can sometimes sit in only some of the body's cells. Testing stored tumour tissue from the old surgery can make the answer much firmer.
Never tested, or the history is unclear
Common in adults treated long ago, whose records may be lost. Until the survivor is tested, their baby is screened as if at risk. Ask the original hospital for old notes and any stored tissue.
Not sure whether this applies to you?
Ask an oncologistStep by step
What happens from planning a pregnancy to school age?
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Before pregnancy
The survivor sees a genetic counsellor and has a blood test for RB1. The options for having children are explained, with time to think them through.
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During pregnancy
Tell the obstetrician about the family history early. Testing in pregnancy is possible if the family fault is known. Book the baby's first eye examination and arrange for a blood sample at birth.
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At birth
A sample of the baby's cord blood, or a small blood test, is checked for the family's exact fault. The result guides everything that follows.
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The first weeks of life
An eye specialist examines both eyes after drops have widened the pupils. Young babies are usually examined awake, wrapped snugly, and settle quickly afterwards.
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Infancy to early school age
A baby who carries the fault has checks close together at first, then further apart. Older babies usually need a short anaesthetic. If the baby does not carry the fault, the checks stop.
On the report
The words you will meet, in plain language
- Heritable retinoblastoma
- The kind caused by an RB1 fault present in every cell from birth. It can be passed to children.
- Bilateral and unilateral
- Bilateral means both eyes were affected. Unilateral means one eye was affected.
- Mosaic
- A gene fault present in only some of the body's cells. It can be missed by a blood test and can still sometimes be passed on.
- Penetrance
- How often a fault actually leads to tumours across everyone who carries it. For most RB1 faults it is high, but a few families carry milder faults.
- Cord blood test
- A test on blood taken from the umbilical cord at birth.
- Preimplantation genetic testing
- Testing embryos made through IVF, so that one without the family fault can be chosen for pregnancy.
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Side by side
What the baby's result changes
The baby carries the fault
The baby does not
Regular eye checks until early school age
Eye checks stop once the result is confirmed
Tumours found early are usually small and treatable
Eye cancer risk is the same as any other child's
Unnecessary X-rays and CT scans are avoided
Routine medical care, as for anyone
Follow-up for other cancers continues into adult life
No extra follow-up is needed
Their own children can be tested in turn
They cannot pass the fault on
Being straight with you
What this page cannot tell you
It cannot tell you which kind of retinoblastoma you had, or what the exact risk is for your own children. That depends on your test result, on whether stored tumour tissue can be tested, and sometimes on the pattern in your wider family. A genetic counsellor who has seen your records is the person to answer it.
It cannot interpret your report
What your specific variant means is a question for the counsellor who ordered the test. Some RB1 faults behave more mildly than others, and that can change the advice for your family.
Who this does not apply to
This page is for the children of someone who had retinoblastoma. A brother, sister or cousin of a survivor has a different question, and it is covered elsewhere. People who had a different childhood eye problem, such as a squint or a cataract, are not affected by any of this. The survivor's own later health, including the risk of other cancers, is covered on its own page.
If you had retinoblastoma and were never tested, call the helpline. Someone will explain how to arrange counselling and a test, ideally before a pregnancy.Commonly believed
Four things survivors tell us, and what is actually true
"Only one of my eyes was affected, so my children are safe."
Usually the risk is low, but some one-eye cases are the inherited kind. Only a test can tell. Until then, your baby is treated as possibly at risk.
"My baby's eyes look normal, so checks are not needed."
Early tumours sit at the back of the eye and cannot be seen by parents or at a routine baby check. By the time a white glow shows in a photograph, the tumour is usually larger.
"If my baby inherits it, they will lose their eyes as I did."
Tumours found on screening are often tiny and can usually be treated with laser or freezing treatment. Saving the eye, and often useful sight, is far more likely when checks start from birth.
"A survivor should not have children."
Many survivors have healthy families. Testing and early eye checks change the outlook for the next generation. Whether and how to have children is your decision, and counselling only lays out the options.
Questions we are asked
Common questions from survivors and their partners
What is the chance my child will inherit it?
If you have the inherited kind, each child has a one in two chance of inheriting the fault, whichever parent you are. If you have the kind that stayed in one eye, the chance is low. A genetic test on you is the only way to know which group you are in.
Can the baby be tested before birth?
Yes, if your exact gene fault is already known. A sample can be taken during pregnancy and tested for that one fault. Embryos made through IVF can also be tested before pregnancy begins. These are personal choices, and a counsellor will explain each one without steering you.
How soon after birth is the first eye check?
In the first weeks of life. Tell the maternity team about the family history before the birth, and book the eye appointment in advance, so it is not left until someone notices a problem. Early checks are quick and usually done without an anaesthetic.
How long do the eye checks go on?
For a child who carries the fault, until early school age, when new tumours become uncommon. They are closest together in the first year. For a child who does not carry the fault, the checks stop once the result is confirmed. The eye team sets the exact schedule.
I was treated decades ago and never tested. What now?
Ask for genetic counselling and an RB1 blood test, ideally before a pregnancy. Try to find your old hospital notes, and ask whether any tissue from your eye surgery was stored. Until you are tested, any baby of yours should be screened as if at risk.
Will a child who carries the fault face other cancers?
A carrier has a raised lifelong risk of some other cancers, including bone and soft tissue cancers and melanoma. That is why unnecessary radiation is avoided and follow-up continues into adult life. Survivors share this risk and should have their own follow-up too.
Does it matter whether the survivor is the mother or the father?
No. The chance of passing on an RB1 fault is the same from either parent. A father who had retinoblastoma needs the same counselling and the same plan for his baby's eye checks as a mother does. Leaving fathers out is a common reason checks are missed.
Can testing and eye checks be arranged in Hyderabad?
Yes. RB1 testing, genetic counselling and specialist eye cancer care are all available in the city, and counselling can be done in Telugu. Families from the districts may need to travel for the early checks. Call the CION helpline and we will help you plan it.
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) — Retinoblastoma
- MedlinePlus Genetics — Retinoblastoma
- National Cancer Institute — Retinoblastoma Treatment (PDQ) - Patient Version
- American Cancer Society — Retinoblastoma
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
Is this retinoblastoma inherited?How testing tells the two kinds apartExamination under anaesthesia for screeningWhat the baby's eye checks involve as they growLifelong second cancer riskThe survivor's own follow-up, in adult lifeRB1 and family planningTesting in pregnancy and IVF options, in detail
Talk to us
Had retinoblastoma and planning a family?
Tell us what you know about your own treatment and whether you were ever tested. We will help you arrange counselling and plan your baby's first eye check. One helpline serves every CION centre.