Medical Oncologist
CION Cancer Clinics
Surveillance in tuberous sclerosis: the checks, organ by organ | CION Cancer Clinics
Surveillance in tuberous sclerosis is a planned set of scans and checks that looks for growths while they are small and still easy to manage. It covers the brain, kidneys, skin, eyes, teeth, heart and, for women, the lungs. Most checks happen once a year or every few years, and the plan changes with age. This page sets out what is checked, roughly when, and why. 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
- What does surveillance for tuberous sclerosis involve?
- Which checks are done, and how often?
- How does the schedule change from birth to adulthood?
- The words you will meet, in plain language
- Four things families tell us, and what is actually true
- What this page cannot tell you
- Common questions about surveillance in tuberous sclerosis
The short answer
What does surveillance for tuberous sclerosis involve?
It is a planned set of scans and checks, repeated over a lifetime, that looks for growths while they are small and easy to manage. The main targets are the brain and the kidneys. Skin, eyes, teeth, heart, lungs, blood pressure, learning and behaviour are checked too.
Why the plan changes with age
Tuberous sclerosis does different things at different stages of life. In babies, heart growths and seizures matter most. Through childhood and into the mid-twenties, a growth near the fluid spaces of the brain is the main thing to watch. From the teenage years onwards, the kidneys take over, and for women, the lungs join them in adult life.
Why it is not mainly cancer screening
Almost everything these checks find is benign. The aim is to stop a benign growth from causing harm by bleeding, blocking fluid in the brain or slowly damaging the kidneys. Kidney cancer is uncommon but is watched for on the same kidney scans.
The schedule below follows international tuberous sclerosis guidance. Your own team may adjust it to what your scans show.Organ by organ
Which checks are done, and how often?
Intervals are given as ranges, because they depend on what earlier checks have found.
Brain
A brain MRI every one to three years until about the mid-twenties, more often if a growth is enlarging. Seizures are reviewed at every visit, with an EEG, a recording of brain activity, when needed. If no growth has appeared by then, routine brain scans can usually stop.
Kidneys
A kidney MRI every one to three years for life. Blood pressure and a blood test of kidney function at least once a year. If a growth is getting bigger, the next scan is brought forward. High blood pressure is treated early, because it adds to the strain on kidneys that already carry growths.
Lungs
Women have a baseline chest CT scan in adult life, repeated every several years if it is clear, and more often if cysts are found. Men and women are asked about breathlessness at every visit.
Everything else
Smaller checks that are easy to forget.
- Skin examination once a year
- Dental check twice a year
- Eye examination once a year if there are changes
- Learning and behaviour checklist once a year
- Heart tracing every few years
Not sure whether this applies to you?
Ask an oncologistFrom diagnosis onwards
How does the schedule change from birth to adulthood?
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At diagnosis
A full set of baseline checks: brain MRI, kidney scan, heart scan, eye and skin examination, dental check, blood pressure, and an EEG in babies and young children. This sets the starting point.
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Babies and young children
Heart growths are followed with heart scans until they shrink, which most do. Parents are taught to spot infantile spasms, a type of seizure that needs treatment quickly.
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School years
Regular brain MRI continues. Learning, attention and behaviour are reviewed every year, so support at school can start early.
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Teenage years
Kidney growths often begin to enlarge, so kidney scans become more important. Young women are told about the lung condition LAM and about smoking and oestrogen.
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Adult life
Brain scans may stop after the mid-twenties if no growth has been seen. Kidney scans and blood pressure checks continue for life, and women begin lung checks.
On your report
The words you will meet, in plain language
- SEGA
- A benign brain growth near the fluid spaces. It is the reason for regular brain scans in childhood.
- Angiomyolipoma
- A benign kidney growth of blood vessels, muscle and fat. It is the reason for lifelong kidney scans.
- LAM
- Small cysts that slowly form in the lungs, mainly in women. It is the reason for lung checks in adult life.
- TAND
- Short for TSC-associated neuropsychiatric disorders. It covers learning, behaviour, mood and autism-related difficulties.
- EEG
- A painless recording of the brain's electrical activity through small pads on the scalp.
- eGFR
- A number from a blood test that shows how well the kidneys are filtering. It is tracked every year.
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Three things that cannot wait for the next check
Go to the nearest emergency department the same day and say the person has tuberous sclerosis if you see any of these. Headache with vomiting, unusual drowsiness or worsening seizures, which can mean a brain growth is blocking fluid. Sudden pain in the side with blood in the urine or faintness, which can mean a kidney growth is bleeding. Sudden chest pain with breathlessness, which can mean a collapsed lung.
Commonly believed
Four things families tell us, and what is actually true
"Once our child is an adult, the scans can stop."
Brain scans may stop in adult life, but the kidneys need watching for life, because angiomyolipomas tend to grow through adulthood. Adult women also start lung checks.
"If there are no symptoms, the scan is not needed."
Brain and kidney growths usually cause no symptoms until they are large or bleed. The point of surveillance is to find them before that, when treatment is simpler and planned.
"A CT scan is just as good as MRI."
CT pictures are good, but CT uses radiation, and these scans are repeated for decades. MRI is preferred for routine checks. CT is kept for emergencies, and for the lungs, where it works best.
"A parent with only skin signs does not need checks."
An adult diagnosed because their child has tuberous sclerosis can have kidney growths without knowing it. They need the same adult surveillance, even if the condition seemed mild.
Being straight with you
What this page cannot tell you
It cannot set your own schedule. Intervals are shortened when a growth is enlarging and can be lengthened when scans stay stable for years. Your neurologist, kidney specialist and genetics team decide that together. What your specific variant means is a question for the counsellor who ordered the test.
Who this does not apply to
A relative who has tested negative for the family's known TSC1 or TSC2 fault does not need this surveillance. Nor does someone whose TSC change was found only in a tumour sample, which is covered under targeted therapy.
Making it work from a district
Many checks can be grouped into one visit. Ask whether the brain and kidney MRI can be done on the same day, and whether blood tests and blood pressure checks can happen closer to home. Keep every report in one folder, and take it to each appointment, so a new doctor can compare scans.
Where the evidence is thin
The schedule is built on expert agreement and follow-up of families rather than large trials. It is still the best guide available.
Questions we are asked
Common questions about surveillance in tuberous sclerosis
Who coordinates all these checks?
Ideally one doctor keeps the whole plan, often a neurologist in childhood and a kidney specialist or physician in adult life. If nobody holds the full list, ask your genetics team to write it down for you, with the date each check is next due.
Does a young child need sedation for MRI?
Often, yes. Most young children cannot lie still long enough for a clear brain MRI. The team uses sedation or a light anaesthetic and checks the child beforehand. Older children can often manage awake, especially if they have seen the scanner before.
Can the brain and kidney MRI be done together?
Often they can be booked on the same day, and in children this can mean one sedation instead of two. Ask the radiology department when you book. It saves travel for families coming from outside Hyderabad.
Why do women need lung scans but men do not?
LAM, the lung condition linked to tuberous sclerosis, affects women far more than men and seems to be driven partly by the hormone oestrogen. Men are checked for lung symptoms at routine visits and scanned only if symptoms appear.
Can women with tuberous sclerosis take the contraceptive pill?
Because oestrogen may make LAM worse, women with tuberous sclerosis are usually advised to discuss oestrogen-containing pills with their doctor. Other forms of contraception are available. This is a decision to make with your team, not to change on your own.
What happens if a scan shows a growth getting bigger?
The next scan is usually brought forward, and treatment is discussed. For both brain and kidney growths, an mTOR tablet such as everolimus is often the first option. Surgery or embolisation are other choices, depending on the growth.
Are these checks covered by Aarogyasri or insurance?
Cover varies by scheme, policy and hospital, and routine scans in someone who is well are often treated differently from treatment. Ask the hospital's scheme desk and your insurer in writing before booking. A written surveillance plan from your doctor can help.
Is the schedule the same for TSC1 and TSC2?
Yes. The same checks are advised whichever gene is affected, and for people with a clinical diagnosis but no gene fault found. How often each check is repeated then depends on what your own scans show.
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) — Tuberous Sclerosis Complex
- MedlinePlus Genetics — Tuberous sclerosis complex
- NHS — Tuberous sclerosis
- National Cancer Institute — Genetics of Kidney Cancer (Renal Cell Cancer) (PDQ)
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
Tuberous sclerosis and kidney tumoursWhat the kidney scans are looking for, and what happens nextTSC1 and TSC2 mutation: which cancers and what riskWhy surveillance is mostly about benign growthsTSC1 and TSC2 positive: what happens nextThe first months after a resultTesting the family for TSC1 and TSC2Which relatives may need these checks too
Talk to us
Not sure which checks are overdue?
Bring the reports you have and we will help you work out which checks are due and which can be grouped into one visit. We can also arrange a specialist opinion on any growth that is changing. One helpline serves every CION centre.