Medical Oncologist
CION Cancer Clinics
Watching for second cancers after retinoblastoma | CION Cancer Clinics
Survivors of the inherited form of retinoblastoma carry an RB1 fault in every cell, which raises the lifetime chance of some other cancers. The main ones are bone and soft tissue cancers and melanoma. Surveillance means knowing the symptoms that matter, having regular reviews and avoiding radiation that is not needed. This page explains who needs it and what it usually involves. 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
- Why do retinoblastoma survivors watch for other cancers?
- Which cancers are survivors watched for?
- What does lifelong surveillance usually look like?
- The terms in your follow-up letters, in plain language
- Which symptoms should prompt a visit to the doctor?
- Four things survivors tell us, and what is actually true
- What this page cannot tell you
- Common questions about second cancers after retinoblastoma
The short answer
Why do retinoblastoma survivors watch for other cancers?
Survivors of the inherited form carry the RB1 fault in every cell, not only in the eye. That raises the lifetime chance of some other cancers, mainly bone and soft tissue cancers and a skin cancer called melanoma. Survivors treated with radiotherapy as children face a higher chance again, mostly within the treated area.
Who this mainly affects
It applies to survivors who had tumours in both eyes, who have a family history of retinoblastoma, or whose blood test found an RB1 fault. A survivor of a one-eye tumour whose blood test found no fault has a much lower chance, close to that of other people.
Why this is not a reason for fear
Most survivors live long, full lives. The point of surveillance is to know which symptoms matter and to act on them early. It also guides everyday choices, such as avoiding tobacco and avoiding radiation that is not needed.
Evidence on the best way to watch for second cancers is still limited, and specialists do not all agree on one schedule.What to watch for
Which cancers are survivors watched for?
The raised chance is spread across a few types. Knowing them helps you and your doctor recognise early signs.
Bone cancers
Osteosarcoma is the best known. It can appear in the bones of the face and skull after radiotherapy, or in the long bones of the arms and legs, often in the teenage years.
Often starts with
- Bone pain that does not settle
- Pain that wakes you at night
- A swelling over a bone
Soft tissue cancers
Cancers of muscle, fat and fibrous tissue, called soft tissue sarcomas. They are often painless at first and show up as a lump that slowly grows.
Melanoma
A skin cancer that often starts as a new or changing mole. It is most treatable when found early, which is why skin checks matter.
Other adult cancers
Later in adult life, a raised chance of cancers such as lung and bladder cancer has been reported. Smoking makes these far more likely.
Not sure whether this applies to you?
Ask an oncologistAcross a lifetime
What does lifelong surveillance usually look like?
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Childhood
Eye checks come first. Some centres also offer brain scans in early childhood to look for a rare related tumour in the pineal gland, a small gland deep in the brain.
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Moving on from children's services
Ask for a written summary of your treatment: whether you had radiotherapy, which chemotherapy drugs were used, and your RB1 result. Keep copies safe.
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A regular review with a doctor who knows your history
Many centres offer a check-up about once a year. The doctor asks about symptoms, examines areas of higher risk and looks at your skin.
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Knowing your own body
Learn what is normal for you. Check your skin for new or changing moles, and report bone pain or lumps promptly rather than waiting for the next review.
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Scans only where they help
Some centres offer whole-body MRI, though evidence on its benefit is still limited. MRI and ultrasound are preferred over CT and X-ray wherever they can answer the question.
Words you will hear
The terms in your follow-up letters, in plain language
- Heritable retinoblastoma
- Retinoblastoma caused by an RB1 fault present in every cell of the body. This is the form linked to other cancers.
- Second primary cancer
- A new, separate cancer. It is not the eye cancer coming back or spreading.
- Sarcoma
- A cancer of bone or of soft tissue such as muscle, fat or fibrous tissue.
- Osteosarcoma
- A sarcoma that starts in bone. It is the second cancer most often linked to retinoblastoma.
- Radiation field
- The part of the body that received radiotherapy. Second cancers are more common here.
- Whole-body MRI
- A scan of the whole body using magnets rather than radiation. It is offered at some centres.
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Worth reporting
Which symptoms should prompt a visit to the doctor?
What to report
Why it matters
Bone pain that does not settle, or wakes you at night
Bone cancers often cause pain before a lump
A lump that is growing, anywhere
Soft tissue cancers are often painless at first
A new or changing mole
Melanoma is most treatable when found early
Swelling or pain where you had radiotherapy
The treated area carries the highest risk
Commonly believed
Four things survivors tell us, and what is actually true
"I was treated as a baby, so it is all behind me."
The eye cancer may be long gone. The RB1 fault stays in every cell, and the raised chance of other cancers continues through teenage and adult life.
"Regular full-body CT scans will keep me safe."
CT scans use radiation, and RB1 carriers are more sensitive to it. MRI and ultrasound are preferred wherever they can answer the question. Ask before any scan.
"Smoking is my own business."
Tobacco raises the chance of lung and bladder cancer for everyone. For an RB1 carrier, staying away from it is one of the few risk factors fully in your control.
"If I ever need radiotherapy again, I must refuse it."
It is avoided where another option works as well. It may still be the right choice for a new cancer. Tell every oncologist about your RB1 result so the decision weighs that risk properly.
Being straight with you
What this page cannot tell you
It cannot tell you your own level of risk. That depends on whether you carry an RB1 fault, whether you had radiotherapy, which area was treated, and your age at the time. A doctor with your full treatment record can estimate it far better than any general page.
It cannot read your report
What your specific variant means is a question for the counsellor who ordered the test. If you were never tested, a blood test now can still answer whether your retinoblastoma was the inherited form.
Who this does not apply to
Survivors of a one-eye tumour whose testing found no RB1 fault usually do not need special cancer surveillance beyond ordinary health checks. Most people reading this for a relative do not need it either, unless their own test shows they carry the fault.
If your childhood records are lost, the hospital that treated you may still hold them. Ask your family which hospital it was and request a copy.Questions we are asked
Common questions about second cancers after retinoblastoma
Does every retinoblastoma survivor have a higher risk of other cancers?
No. The raised risk is mainly in survivors of the inherited form, who carry an RB1 fault in every cell. Survivors of a one-eye tumour without that fault have a much lower risk. A blood test is the way to know which group you are in.
Which second cancers are most common?
Bone cancers such as osteosarcoma, soft tissue sarcomas and melanoma are the ones most often linked to retinoblastoma. Later in adult life, some other cancers, including lung and bladder, have also been reported more often, especially in smokers.
How often should I be checked?
Many centres suggest a review about once a year with a doctor who knows your history, plus prompt visits for new symptoms. There is no single agreed schedule, and your doctor may adjust it based on your treatment and your RB1 result.
Is whole-body MRI worth having?
Some centres offer it because it uses no radiation and can find some tumours early. Studies so far are small, and it can pick up harmless findings that lead to more tests. Discuss the likely benefit and the cost with your doctor before deciding.
I had radiotherapy as a child. Does that change things?
Yes. The treated area, usually around the eye and face, carries a higher chance of a second cancer, especially bone and soft tissue cancers. Any swelling, pain or change in that area should be checked promptly, even years later.
Should I avoid dental X-rays?
Do not avoid dental care. Tell your dentist about your RB1 result and ask that X-rays are taken only when they are really needed. The occasional small dental X-ray carries a very small dose. Larger scans deserve a question each time.
Does sun exposure matter?
Because melanoma is one of the linked cancers, sensible sun protection is worth it. Cover up in strong midday sun, use sunscreen on exposed skin, and check your skin for new or changing moles. Show anything unusual to a doctor.
Who should look after my surveillance as an adult?
Ideally an oncologist or survivorship clinic that understands retinoblastoma, working with your family doctor. Keep your treatment summary and genetic report with you, and share them with any new doctor so your history is never lost.
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)
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Sources
- GeneReviews (NCBI) — Retinoblastoma
- National Cancer Institute — Retinoblastoma Treatment (PDQ) – Health Professional Version
- National Cancer Institute — Late Effects of Treatment for Childhood Cancer (PDQ) – Patient Version
- MedlinePlus Genetics — 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
Lifelong second cancer risk and what it meansThe risk itself, explained in more depthSurveillance for RB1 carriersHow checks change from childhood to adult lifeUnilateral vs bilateral retinoblastomaWhat one eye or both eyes says about the geneTesting the family for RB1Whether your relatives should be tested too
Talk to us
Not sure whether you need second cancer checks?
Tell us about your retinoblastoma treatment and any genetic result you have. We will help you find the right follow-up and explain what it involves. One helpline serves every CION centre.