Medical Oncologist
CION Cancer Clinics
Surveillance for FLCN carriers: what is checked and when | CION Cancer Clinics
If you carry an FLCN fault, the check that matters most is a regular kidney scan, usually an MRI, starting in early adult life. It finds kidney tumours while they are small and simple to treat. The lungs and skin need little routine checking. This page explains what is scanned, how the plan changes over time, and which symptoms need a doctor before your next scan. 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 checks does an FLCN carrier need?
- Which parts of the body are checked, and how?
- How does the surveillance plan change over the years?
- What do the words on a surveillance report mean?
- What can this page not tell you?
- What do carriers get wrong about BHD surveillance?
- Common questions about FLCN surveillance
The short answer
What checks does an FLCN carrier need?
The one check that matters most is a regular kidney scan, usually an MRI, starting in early adult life. Its job is to find any kidney tumour while it is small. The lungs and skin usually need no routine scans at all.
Why the kidneys come first
An FLCN fault causes Birt-Hogg-Dubé syndrome, or BHD. Its lung cysts and skin bumps are not cancers. Its kidney tumours sometimes are, and they rarely cause symptoms until they are large. A scan is the only reliable way to find them early, when a small operation that keeps the kidney is enough.
How often, in plain terms
Most guidance suggests a kidney MRI about once a year from early adulthood. If scans stay clear for some years, your team may space them out. If a small tumour appears, scans come closer together. The exact timing is set by your urologist and genetics team, based on your scans and your family.
Surveillance does not stop a tumour forming. It finds one early.Organ by organ
Which parts of the body are checked, and how?
Each organ affected by BHD needs a different level of attention. Only one needs a lifelong plan.
Kidneys
MRI is preferred because it uses no radiation, and carriers will have many scans over a lifetime. CT is used when MRI is not possible.
Why not ultrasound alone
- It can miss small tumours
- BHD tumours look similar to normal kidney
- It may be used between MRIs, not instead
Lungs
A chest CT is often done once to see whether cysts are present. Repeat scans are only needed if you develop symptoms. What matters more is knowing the signs of a collapsed lung, and telling any new doctor that you have cysts before surgery or a long flight.
Skin
No screening is needed. The bumps are harmless and do not become skin cancer. A dermatologist can treat them if they bother you, though they often come back after treatment.
Bowel
Not part of routine BHD checks. If a relative had bowel cancer, your team may suggest a colonoscopy based on that history.
The evidence on bowel risk is thin. This may change.Not sure whether this applies to you?
Ask an oncologistOver a lifetime
How does the surveillance plan change over the years?
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After the result
You meet a genetic counsellor and are referred to a urologist. A first kidney MRI is booked, and often a one-off chest CT.
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Early adult life onwards
Kidney MRIs follow a regular rhythm, usually about once a year. Each new scan is compared with the last one, so keep every report and disc.
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If a small tumour appears
It is usually watched rather than removed at once. Scans may come closer together to see how fast it is growing.
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When a tumour grows
Once a tumour reaches a certain size, often around three centimetres, your urologist discusses removing it while keeping the rest of the kidney.
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After any surgery
Scans continue for life. New tumours can form in either kidney years later, so surveillance does not end after an operation.
On your scan report
What do the words on a surveillance report mean?
- Surveillance
- Regular planned checks in someone who is well, to catch a problem early.
- Renal lesion
- Any spot on the kidney that looks different. It is not always a tumour, and not every tumour is a cancer.
- Solid mass
- A lump of tissue rather than fluid. In BHD this is watched closely and measured on every scan.
- Simple cyst
- A fluid-filled pocket in the kidney. These are common in everyone and are usually harmless.
- Contrast
- A dye given through a vein during a scan, so tumours stand out. Tell the team if you have kidney problems or allergies.
- Active surveillance
- Watching a small tumour with repeat scans instead of removing it straight away.
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One thing that cannot wait for your next scan
Sudden sharp chest pain on one side, with breathlessness that comes on quickly, can mean a lung cyst has burst and the lung has collapsed. Go to the nearest emergency department the same day and tell them you have BHD. Do not wait for it to settle and do not fly. Blood in the urine or a new ache in the side is less urgent, but book a doctor within days rather than waiting for the next scheduled scan.
Being straight with you
What can this page not tell you?
It cannot set your personal schedule. The timing of your first scan, how often scans follow and when a tumour needs surgery depend on your scans, your age and your family. What your specific variant means is a question for the counsellor who ordered the test.
It cannot tell you what a spot on your scan means
Scan reports use careful words, and one spot can mean several things. Take the report and the disc to your urologist rather than reading it alone at night.
Who this does not apply to
This plan is for confirmed FLCN carriers. Relatives who tested negative for the family's known fault do not need BHD kidney scans. Most people with an ordinary kidney cyst on an ultrasound do not have BHD either. Relatives who have not yet been tested should speak to a counsellor before starting any scan plan.
Making it work from a district
Many families travel to Hyderabad for MRI. Try to have scans at the same centre each time, so they can be compared. Ask whether your insurance or Aarogyasri covers surveillance scans before booking.
Commonly believed
What do carriers get wrong about BHD surveillance?
"I feel fine, so I can skip this year's scan."
BHD kidney tumours rarely cause symptoms while small. Feeling well tells you nothing about the kidneys. That is the whole reason the scans exist.
"An ultrasound is just as good and cheaper."
Ultrasound can miss small BHD tumours. It may be used between MRIs, but it should not replace them without your urologist's agreement.
"Once a tumour is removed, the scans can stop."
New tumours can appear later in either kidney. Carriers stay on surveillance for life, including after surgery.
"A tumour on the scan means immediate surgery."
Small tumours are usually watched. Surgery is discussed once a tumour grows past a certain size, and the aim is always to keep as much kidney as possible.
Questions we are asked
Common questions about FLCN surveillance
When should kidney scans start?
Most guidance suggests starting in early adult life. If a relative had a kidney tumour unusually young, your team may start sooner. Your genetic counsellor and urologist agree the start point with you.
Is MRI safe to repeat every year?
Yes. MRI uses magnets and radio waves, not radiation, which is why it is preferred for lifelong checks. Tell the team about any metal implants, pacemakers or kidney problems before the scan.
Do children need scans?
Kidney tumours in BHD are very uncommon in childhood, so scans usually start in adult life. Testing a child is normally discussed with a counsellor first. Most families wait until the child can take part in the decision.
Can the scans be done near my home?
Sometimes. The scan must be good enough to show small tumours, and it helps to use the same centre each time. Ask your urologist which centres they trust to read BHD scans.
What if my MRI shows something small?
This is common in BHD and usually means closer watching, not surgery. Your urologist will compare it with earlier scans and decide when to look again. Keep every appointment in the meantime.
Does pregnancy change the scan plan?
Contrast dye is usually avoided in pregnancy, so scans may be delayed or done differently. Tell your team if you are pregnant or planning to be, and they will adjust the timing.
Who keeps track of when my next scan is due?
Ideally one named doctor, usually your urologist. In practice, carriers often have to keep track themselves. A simple folder of reports and discs, with the next due date written on the front, helps a great deal.
Where do I start?
Bring your genetic report to a urologist and ask for a kidney scan plan in writing. Call the CION helpline if you are not sure who to see, and we will help you book the right appointments.
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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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.
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Sources
- GeneReviews (NCBI) — Birt-Hogg-Dubé Syndrome
- National Cancer Institute — Genetics of Kidney Cancer (Renal Cell Cancer) (PDQ)
- MedlinePlus Genetics — Birt-Hogg-Dubé syndrome
- NHS — Collapsed lung (pneumothorax)
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
FLCN mutation: which cancers and what riskWhy the kidneys are the focus of every scanLung cysts, collapsed lung and FLCNWhat to do if a lung collapses between scansFLCN positive: what happens nextThe first steps after a positive resultKidney surveillance protocolsHow kidney scans work across inherited conditions
Talk to us
Need a kidney scan plan after an FLCN result?
Bring your genetic report and any scans you already have. We will help you arrange a urology review and a written surveillance plan. One helpline serves every CION centre.