CION Cancer Clinics
The Toronto protocol: Li-Fraumeni surveillance explained | CION Cancer Clinics
The Toronto protocol is the check-up plan most doctors use for people with Li-Fraumeni syndrome. It combines regular examinations, ultrasound and MRI, starting in infancy and continuing for life, and it avoids radiation wherever it can. It cannot stop a cancer starting, but it is built to find one early. This page explains each test, when it begins and which symptoms should never wait. At CION Cancer Clinics, our oncologists plan screening and care for families with an inherited cancer syndrome, explained in plain words.
The short answer
What is the Toronto protocol?
The Toronto protocol is a schedule of regular check-ups and scans for people who carry an inherited TP53 fault, the cause of Li-Fraumeni syndrome. It was developed by doctors in Toronto and has since been updated by international experts. It combines physical examinations, ultrasound and MRI, and it deliberately avoids radiation.
Why it looks at the whole body
Most inherited syndromes raise the risk in one or two organs, so checks focus there. A TP53 fault can lead to tumours almost anywhere, from the brain to the bones to the adrenal glands. The protocol therefore pairs organ-specific tests with a whole-body MRI that looks at everything in one sitting.
What it has shown so far
Families who followed the protocol had more tumours found at an early stage, when they were smaller and easier to treat. Survival was better in the group being watched than in carriers who were not. The studies are small, because the syndrome is rare, but the results have been consistent enough for the approach to be widely recommended.
The protocol does not stop cancer from starting. It is designed to find it early.The building blocks
Which tests make up the protocol?
Each test is chosen for a particular cancer and for the age at which that cancer tends to appear.
Regular physical examinations
A doctor checks growth, blood pressure, the skin and the nervous system, and looks for signs of hormone changes that can point to an adrenal tumour in a child.
Also asked about
- New headaches or vomiting
- Pain in a bone that does not settle
- Any new lump
Abdominal and pelvic ultrasound
Used frequently in childhood to look for adrenal gland tumours, which mostly affect young children. It is quick, painless and uses no radiation.
Whole-body and brain MRI
A yearly whole-body MRI looks for sarcomas and other tumours. A separate, more detailed brain MRI is done at the same visit, because brain tumours need a closer look than the whole-body scan gives.
Adult additions
From early adulthood, women have a yearly breast MRI. Later, camera tests of the stomach and bowel are added, along with a yearly skin check by a dermatologist.
Not sure whether this applies to you?
Ask an oncologistThe schedule, in plain words
When does each part of the protocol start?
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From birth
A physical examination and an ultrasound of the abdomen and pelvis every three to four months. Some centres add blood tests for adrenal hormones. These visits are short, and most can be done without any needle at all.
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Once a year, from childhood
A whole-body MRI and a brain MRI. Young children often need sedation or a light anaesthetic to lie still, which the team plans ahead.
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From early adulthood
Physical examinations move to twice a year and the frequent ultrasounds stop. A dermatologist checks the skin once a year.
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From around twenty, for women
A yearly breast MRI is added. Women are also taught to know how their breasts normally look and feel, and to report changes early.
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From the mid-twenties
Camera tests of the stomach and bowel every few years. They may start earlier if a relative had bowel cancer young. Any growths found can often be removed during the same test.
On the appointment letter
What do the words on a surveillance plan mean?
- Surveillance
- Planned, repeated checks in someone who is well, aimed at finding a tumour early. It is not a test for whether you have the fault.
- Whole-body MRI
- A scan from head to feet using magnets and radio waves. It gives no radiation dose, which matters for TP53 carriers.
- Contrast
- A dye injected into a vein to make some tissues show more clearly. It is used for some brain scans, not for every scan.
- Endoscopy and colonoscopy
- Camera tests of the stomach and the bowel, done under sedation, that can find and remove early growths.
- Incidental finding
- Something unexpected seen on a scan. Most turn out to be harmless, but some need a second look.
- Recall
- Being asked back for another scan or a biopsy after a result that is unclear. It does not mean cancer has been found.
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The protocol does not replace your own eyes. If a carrier, especially a child, has a headache that wakes them from sleep and comes with vomiting, a fit, a sudden change in vision, speech or walking, or new weakness on one side, take them to a doctor the same day and say they carry a TP53 fault. A new lump or a bone pain that keeps coming back should be seen within days, not saved for the yearly visit.
Being straight with you
What this page cannot tell you
It cannot give you your own schedule. The protocol is a starting point, and your team adjusts it for your age, your sex, your family's cancers and any treatment you have already had. Someone who had radiotherapy for a first cancer, for example, may need closer checks of the treated area.
It cannot read your report or your scans
What your specific variant means is a question for the counsellor who ordered the test. What a scan shows is a question for the radiologist and oncologist who know your history. A finding that sounds alarming in a report is often harmless once it is seen in context.
Who this does not apply to
This schedule is for people with a confirmed disease-causing TP53 fault, and for untested children in a known TP53 family. It is not for relatives who tested negative, and it is not for people whose report shows only a variant of uncertain significance. Most people do not need it.
Government schemes in India are built around treating cancer rather than screening well people, so check cover before planning a yearly programme.Commonly believed
Four things families tell us, and what is actually true
CT uses X-rays, and TP53 carriers are more easily harmed by radiation. Repeated CT scans could add to the very risk the programme is trying to manage. MRI and ultrasound avoid that.
A clear scan is reassuring for that day. Cancers can still appear between scans, which is why new symptoms should always be reported rather than held back for the next visit.
Survivors carry a real chance of a second, separate cancer. The protocol usually continues after treatment, alongside the follow-up for the first cancer.
Finding a small tumour early is exactly what the protocol is for. Many tumours found this way are removed by surgery alone, without the heavier treatment a later diagnosis would need.
Questions we are asked
Common questions about the Toronto protocol
Is the Toronto protocol followed in India?
Specialist centres in India use it as the basis for TP53 surveillance, adapted to what is available locally. Whole-body MRI is offered at larger centres in Hyderabad. Your team will explain which parts can be done close to home and which need a trip to the city.
Can all the scans be done on one day?
Often the whole-body and brain MRI can be done in one sitting, and the clinic visit on the same day. Camera tests and breast MRI may need separate appointments. Families travelling from districts can ask for the visits to be grouped together.
Does a baby really need an ultrasound so often?
Adrenal gland tumours tend to appear in the first years of life and can grow quickly. Frequent ultrasound is how they are caught while small. It is painless, needs no injection and takes only a few minutes. The frequency drops once your child moves out of the age when these tumours usually appear.
What if we miss a scan?
Rebook it as soon as you can and tell the team. One missed scan is not a disaster, but gaps add up over the years. If travel or cost is making attendance hard, say so, because the plan can sometimes be arranged differently. Your team would rather adapt the plan than lose you from it.
Are the blood tests for leukaemia part of it?
Routine blood counts are not a core part of the updated recommendations, although some centres include them. Report unusual tiredness, bruising, frequent infections or pale skin to your doctor between visits, whatever your schedule says. A simple blood count can be arranged quickly if any of these appear.
What happens if a scan shows something?
Usually a closer look first, such as a targeted MRI or a biopsy. Many findings turn out to be harmless. If a tumour is confirmed, your team will plan treatment that takes the TP53 fault into account, including avoiding radiotherapy where possible.
Do men follow the same protocol?
Yes, apart from breast MRI. Men have the physical examinations, whole-body and brain MRI, camera tests and skin checks. They should still report any lump in the chest area, because breast cancer can occur in men too. The same rules on avoiding radiation apply to them.
Who coordinates all these appointments?
Ideally one named oncologist or genetics team keeps the whole schedule and reviews every result. Keep your own record of dates and findings as well. Call the CION helpline if you need help setting up or organising a surveillance plan.
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.
Dr. C. Raghavendra Reddy
MBBS(Gold Medal), DNB(General Medicine), DM(Medical Oncology)(Gold Medal)
Dr. Bharati Devi Gorantla
MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
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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.
Sources
- GeneReviews (NCBI) — Li-Fraumeni Syndrome
- MedlinePlus Genetics — Li-Fraumeni syndrome
- MedlinePlus Genetics — TP53 gene
- 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.
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Related pages
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Need help setting up a TP53 surveillance plan?
Tell us who in the family carries the fault and their ages. We will help you plan the scans and group appointments where we can, so that travel is kept to a minimum. One helpline serves every CION centre.