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Kidney tumours in tuberous sclerosis: what they are and how they are treated | CION Cancer Clinics
Most kidney growths in tuberous sclerosis are angiomyolipomas, benign tumours made of blood vessels, muscle and fat. They are not cancer, but larger ones can bleed. Cysts are also common, and true kidney cancer is uncommon. Regular scans, blood pressure checks and, when a growth is getting bigger, a tablet that shrinks it, keep most people's kidneys working. This page explains what the growths are and how they are managed. 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 kind of kidney tumours does tuberous sclerosis cause?
- Which kidney changes might your report describe?
- How is a growing kidney tumour treated?
- 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 kidney tumours in tuberous sclerosis
The short answer
What kind of kidney tumours does tuberous sclerosis cause?
Most are angiomyolipomas, benign growths made of blood vessels, muscle and fat. They are not cancer and they do not spread. Most adults with tuberous sclerosis develop at least one, usually in both kidneys, and they tend to grow slowly through the teenage years and adult life.
Why size matters more than the label
A small angiomyolipoma usually causes no trouble at all. As it grows, its blood vessels can become weak and balloon out, and a large growth can bleed. Many small growths together can also slowly crowd out healthy kidney. That is why doctors track the size of each growth on regular scans, and why treatment is offered while it is still growing, before it bleeds.
Cysts, and the uncommon cancer
Kidney cysts, which are small fluid-filled pockets, are also common. True kidney cancer, called renal cell carcinoma, is uncommon in tuberous sclerosis, but it can appear younger than it usually does. A growth that looks different from a typical angiomyolipoma on the scan is examined more closely.
Protecting kidney function for life is the aim, not just dealing with one growth.On the scan report
Which kidney changes might your report describe?
A scan report can list several findings at once. These are the four you are most likely to see.
Angiomyolipoma
The typical tuberous sclerosis kidney growth. The fat inside it usually shows up clearly on MRI or CT, which is how the radiologist recognises it.
The report may mention
- The size of the largest growth
- Whether it has grown since the last scan
- Any ballooned blood vessel inside it
Fat-poor angiomyolipoma
An angiomyolipoma with little visible fat. It is still benign, but it can look like a cancer on the scan, so a further scan or a biopsy, meaning a small tissue sample, may be needed.
Cysts
Usually a few and harmless. A small group of people whose gene change also affects a neighbouring kidney gene develop many cysts from childhood and need closer kidney care.
Kidney cancer
Uncommon, and sometimes hard to tell apart from a fat-poor angiomyolipoma. When cancer is suspected, a cancer team plans the next step, aiming to save as much kidney as possible.
Not sure whether this applies to you?
Ask an oncologistFrom watching to treating
How is a growing kidney tumour treated?
Watching with scans
Small, stable growths are simply watched. MRI is preferred because it uses no radiation and shows fat well. Blood pressure and a kidney blood test are checked alongside.
A tablet to shrink it
When a growth is getting bigger, usually once it passes about three centimetres, an mTOR tablet such as everolimus is the usual first treatment. It shrinks most growths but needs to be continued, with regular blood tests.
Blocking the blood supply
In embolisation, a doctor passes a thin tube through a blood vessel in the groin and blocks the vessels feeding the growth. It is the main way to stop a bleed.
Surgery that saves the kidney
If surgery is needed, the aim is to remove only the growth. Taking out a whole kidney is avoided wherever possible, because new growths can appear in either kidney later.
On your report
The words you will meet, in plain language
- Angiomyolipoma
- A benign kidney growth made of blood vessels, muscle and fat. Often shortened to AML on reports, which here has nothing to do with leukaemia.
- Aneurysm
- A blood vessel that has ballooned out. Inside an angiomyolipoma, it is one sign of a higher chance of bleeding.
- Embolisation
- Blocking the blood vessels that feed a growth from inside, through a thin tube, without open surgery.
- eGFR
- A number from a blood test that estimates how well the kidneys are filtering. It is tracked over the years.
- Everolimus
- An mTOR tablet that calms the overactive growth signal behind tuberous sclerosis and shrinks many kidney growths.
- Nephron-sparing surgery
- An operation that removes only the growth and keeps the rest of the kidney working.
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Signs of a bleeding kidney growth
Sudden pain in the side, back or tummy, blood in the urine, or feeling faint, cold and clammy can mean a kidney growth is bleeding. Go to the nearest emergency department the same day and say the person has tuberous sclerosis with kidney growths. Carry the latest kidney scan report if you can. A bleed can often be stopped by embolisation without removing the kidney.
Commonly believed
Four things families tell us, and what is actually true
"A tumour in the kidney means cancer."
In tuberous sclerosis, almost every kidney growth is a benign angiomyolipoma or a cyst. The word tumour on a report simply means a lump. It does not by itself mean cancer.
"Taking out the kidney is the safest option."
It is rarely the right first step. New growths can appear in either kidney over a lifetime, so losing one kidney early leaves less to protect later. Tablets, embolisation and kidney-saving surgery come first.
"No pain means the growth needs no scans."
Angiomyolipomas usually cause no symptoms until they bleed. Regular scans are how growth is spotted early enough to treat it calmly rather than in an emergency.
"Once the tablet has shrunk it, the job is done."
Growths often start growing again after an mTOR tablet is stopped. Whether and how long to continue is a decision you make with your kidney or oncology team, and scans carry on either way.
Being straight with you
What this page cannot tell you
It cannot tell you whether a growth on your own scan needs treatment. That depends on its size, how fast it is growing, what it looks like and how well your kidneys are working. A kidney specialist or oncologist who can see the actual images is the right person to decide.
Where the evidence is thin
Everolimus has been tested in trials of people with tuberous sclerosis and shrinks most growths. How long to continue it, and what happens over decades, is still being studied. Kidney cancer in tuberous sclerosis is rare enough that exact figures vary between studies.
Who this does not apply to
An angiomyolipoma found by chance in someone with no other features of tuberous sclerosis is usually a one-off growth, not an inherited condition. If a TSC1 or TSC2 change was found only in a tumour sample, that is also different and is covered under targeted therapy. What your specific variant means is a question for the counsellor who ordered the test.
Cost and access
Long-term everolimus is a real expense. Ask about cheaper Indian versions and whether Aarogyasri or your insurance applies before starting.
Questions we are asked
Common questions about kidney tumours in tuberous sclerosis
Is an angiomyolipoma cancer?
No. It is a benign growth of blood vessels, muscle and fat, and it does not spread. The concern is bleeding once it grows large. That is why the size is measured on each scan and treatment is offered when it is growing, rather than waiting for symptoms.
How often are the kidneys scanned?
International guidance suggests a kidney MRI every one to three years throughout life, with blood pressure and a kidney blood test at least once a year. Growths that are getting bigger are scanned more often. Your team sets the exact interval from what earlier scans have shown.
Can ultrasound be used instead of MRI?
Ultrasound is useful and widely available, but it is less accurate at measuring growths and telling them apart. MRI is preferred. CT gives good pictures but uses radiation, so it is kept for emergencies or when MRI is not possible.
What are the side effects of everolimus?
The most common are mouth ulcers, a higher chance of infections, and changes in blood cholesterol and sugar. Regular blood tests pick these up. Women may notice changes in their periods. Tell your team about any fever or mouth soreness early, as doses can often be adjusted.
Will my kidneys fail?
Most people with tuberous sclerosis keep useful kidney function throughout life, especially when growths are watched and treated early. Kidney function can decline over time in some people, which is why blood pressure is controlled and a kidney blood test is done at least once a year.
Does a child with tuberous sclerosis need kidney scans?
Yes. A first kidney scan is done soon after diagnosis, even in young children, and repeated through childhood. Some children develop many cysts early, and kidney growths often start to enlarge in the teenage years. Blood pressure is checked at every visit.
How is kidney cancer told apart from an angiomyolipoma?
Usually by MRI, looking for fat and for how the growth takes up contrast dye. If the scan is unclear, or the growth is behaving unusually, a biopsy may be advised. A growth that is getting bigger despite everolimus is also looked at more closely.
Can I donate a kidney to a relative?
People with tuberous sclerosis are usually not suitable kidney donors, because growths can appear in the remaining kidney later. A relative who has tested negative for the family's known gene fault can be assessed as a donor in the normal way.
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) — Tuberous Sclerosis Complex
- National Cancer Institute — Genetics of Kidney Cancer (Renal Cell Cancer) (PDQ)
- MedlinePlus Genetics — Tuberous sclerosis complex
- NHS — Tuberous sclerosis
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
Surveillance for TSC1 and TSC2 carriersWhere kidney scans fit in the full lifelong planTSC1 and TSC2 mutation: which cancers and what riskThe wider picture of growths and cancer riskTSC1 and TSC2 positive: what happens nextThe first months after a resultTesting the family for TSC1 and TSC2Which relatives to check, and how
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