Medical Oncologist
CION Cancer Clinics
Kidney surveillance in Birt-Hogg-Dubé syndrome: scans, results and next steps | CION Cancer Clinics
People who carry a Birt-Hogg-Dubé fault are usually offered regular kidney scans for life, most often MRI. BHD kidney tumours tend to grow slowly, so scans can find them small enough to remove while keeping most of the kidney. This page explains which scan is best, what each result usually leads to, and which symptoms should not wait for the next appointment. At CION Cancer Clinics, our oncologists plan screening and care for families with an inherited cancer syndrome, explained in plain words.
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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
- How are the kidneys watched in BHD?
- Which scan is best for checking BHD kidneys?
- What happens from the first scan onwards?
- What do the words on a kidney scan report mean?
- What does each kind of scan result usually lead to?
- What this page cannot tell you
- What do people often get wrong about kidney checks in BHD?
- Common questions about kidney surveillance in BHD
The short answer
How are the kidneys watched in BHD?
Everyone who carries a Birt-Hogg-Dubé fault is usually offered regular kidney scans, most often MRI, starting in early adult life and continuing for life. The aim is to find a kidney tumour while it is small enough to remove and still keep most of the kidney. Relatives who tested negative for the family fault do not need these scans.
Why the kidneys get the most attention
BHD has three features: skin bumps, lung cysts and kidney tumours. The skin bumps and lung cysts are not cancer. The kidney tumours can be, so this is where regular checks make the biggest difference. Kidney tumours usually cause no symptoms until they are large, which is why waiting for symptoms is not enough.
Why scans work well in BHD
Most BHD kidney tumours grow slowly. A scan every so often can find them early, and the team can watch a small tumour for a while before deciding to act. When treatment is needed, it can usually be done without removing the whole kidney.
Kidney surveillance in BHD is lifelong. A clear scan is good news for that day, not a reason to stop.Choosing the scan
Which scan is best for checking BHD kidneys?
Each test has strengths and limits. Your team will choose based on your history, your kidneys and what is available near you.
MRI
Usually the preferred scan. It shows small tumours clearly and uses no radiation, which matters for a test repeated for life. It takes longer and some people find the machine noisy.
Ultrasound
Quick, cheap and widely available, including in district hospitals. It can miss small tumours, especially the types common in BHD, so it is not usually relied on alone.
CT scan
Gives excellent detail and is often used to plan surgery. It involves radiation, so doctors avoid using it as the routine repeated scan in young carriers.
Blood and urine tests
These do not find tumours. They check how well the kidneys are working, which matters more over the years if part of a kidney is ever removed.
Usually includes
- A creatinine blood test
- A blood pressure check
Not sure whether this applies to you?
Ask an oncologistOver the years
What happens from the first scan onwards?
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A first scan sets the baseline
The first MRI shows what your kidneys look like at the start. Simple fluid-filled cysts are common and are recorded so they are not mistaken for something new later.
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If nothing is seen, scans repeat at set intervals
Your team sets the gap between scans. Guidance varies between expert groups, and your plan may differ from a relative's.
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A small solid lump means closer watching
If a small tumour appears, scans usually become more frequent to see how fast it grows. Many small BHD tumours grow very slowly.
-
Treatment when it passes a size threshold
Once a tumour grows past a size your urologist will explain, it is usually removed with kidney-sparing surgery. Some small tumours can be treated by freezing or heating them through a needle.
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Surveillance carries on afterwards
New tumours can appear in either kidney years later. Scans continue after treatment, looking at both kidneys every time.
On your scan report
What do the words on a kidney scan report mean?
- Simple cyst
- A small bag of fluid in the kidney. Very common in everyone, and not a tumour.
- Solid lesion or mass
- An area of solid tissue rather than fluid. In BHD this needs follow-up, though it is not always cancer.
- Active surveillance
- Watching a small tumour with regular scans instead of treating it straight away.
- Partial nephrectomy
- Surgery that removes only the tumour and a rim of healthy tissue, keeping the rest of the kidney.
- Ablation
- Destroying a small tumour by freezing or heating it through a needle, without open surgery.
- Creatinine
- A waste product measured in the blood. It shows how well the kidneys are filtering.
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Side by side
What does each kind of scan result usually lead to?
The scan shows
What usually happens next
Nothing new
The next routine scan, as planned
A simple fluid cyst
No action, it is recorded for comparison
A small solid lump
Closer scans to measure how fast it grows
A lump that keeps growing
A talk with a urologist about kidney-sparing treatment
An unclear finding
A different scan type to take a closer look
Being straight with you
What this page cannot tell you
It cannot tell you when your scans should start, how often you need them, or at what size your tumour should be treated. Expert groups have published suggestions, but they differ, and BHD is rare enough that studies so far are small. A urologist and a genetic counsellor who know your history should set your plan.
It cannot read your scan or your genetic report
What your specific variant means is a question for the counsellor who ordered the test. What a lump on your scan means is a question for the radiologist and urologist who can see the images. Bring every previous report, because comparing scans over time is the heart of surveillance.
Who this does not apply to
Relatives who tested negative for the family's FLCN fault do not need these scans. A simple kidney cyst found by chance in someone without BHD is extremely common and usually needs nothing. People whose kidney tumour was tested for gene changes only inside the tumour have a tumour result, covered on our targeted therapy pages.
Ask your insurer or scheme whether routine scans in someone who is well are covered, because this varies a great deal.Commonly believed
What do people often get wrong about kidney checks in BHD?
"My kidney blood tests are normal, so I do not need a scan."
Blood tests show how well the kidneys filter. A small tumour does not change them. Only a scan can find a tumour early.
"An ultrasound every year is just as good as an MRI."
Ultrasound can miss small tumours, especially the types seen in BHD. It has a place, but MRI is usually preferred for the main routine scan.
"If a tumour is found, the whole kidney has to go."
In BHD, surgeons try hard to keep as much kidney as possible, because new tumours may appear later. Removing a whole kidney is usually avoided unless there is no other safe option.
"I will feel it if something goes wrong in my kidneys."
Small kidney tumours almost never cause pain or blood in the urine. By the time they do, they are usually larger. That is exactly why scans are done while you feel well.
Questions we are asked
Common questions about kidney surveillance in BHD
When should kidney scans start in BHD?
Usually in early adult life, because kidney tumours are rare in childhood. Expert groups differ on the exact age, and your team may start earlier if a relative was diagnosed young. A genetic counsellor or urologist will set the start point for each person in your family.
How often will I need a scan?
It depends on your plan and on whether anything has been found. With clear kidneys, scans are spaced out. Once a small tumour is seen, they usually come closer together to track its growth. Your team will tell you the interval, and it may change over time.
Is MRI safe to repeat for many years?
Yes. MRI uses magnets and radio waves, not radiation. Some scans use an injected contrast dye, and your kidney blood test is checked before it is given. Tell the team about any metal implants, pacemakers or allergies before each scan.
What symptoms should make me see a doctor between scans?
Blood in the urine, a lasting pain in the side or back, or a lump in the belly should be checked within days, not left for the next routine scan. These are more often caused by other things, such as stones or infection, but in BHD they deserve a prompt look.
Can the scans be done near my home?
Often yes, if a good MRI service is available nearby. What matters is that the same kind of scan is used each time and that one specialist compares them. Keep copies of every scan and report, including the images on a disc or phone link.
Will surgery affect my kidney function?
Kidney-sparing surgery keeps most healthy tissue, so most people keep good kidney function. Because more tumours may come later, protecting kidney tissue at every step matters. Your team will check your blood pressure and kidney blood tests over the years.
Do my children need kidney scans?
Only if they carry the family fault, and usually not until adult life. Testing a child is a decision to make with a genetic counsellor. A child who tests negative needs no scans at all. Keep a simple family list of who has been tested, so each person knows whether scans apply to them.
What if I cannot afford an MRI every time?
Tell your team honestly. They may be able to combine scan types, adjust timing within safe limits or help you check cover under a government scheme or your insurance. Missing scans without telling anyone is the worst option, so ask before you skip.
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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Sources
- GeneReviews (NCBI Bookshelf) — Birt-Hogg-Dubé Syndrome
- National Cancer Institute — Genetics of Kidney Cancer (Renal Cell Cancer) (PDQ) - Health Professional Version
- MedlinePlus Genetics — Birt-Hogg-Dubé syndrome
- Cancer Research UK — Kidney cancer
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.
Talk to us
Need help setting up kidney scans for your family?
Tell us who in your family carries the BHD fault and where they live. We can help plan scans and specialist reviews so they fit around work and travel. One helpline serves every CION centre.