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CION Cancer Clinics
After a positive FLCN result: your next steps | CION Cancer Clinics
A positive FLCN result means you have Birt-Hogg-Dubé syndrome, which raises your risk of kidney tumours. It is not a cancer diagnosis and needs no treatment today. The next steps are genetic counselling, a first kidney scan and a plan to tell close relatives. This page walks through the first year, the doctors you will see, and what changes in daily life. 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
- I have tested positive for FLCN. What happens now?
- Which doctors will I see after a positive result?
- What does the first year after an FLCN result look like?
- What do the words on a positive FLCN report mean?
- What changes after a positive result, and what does not?
- What can this page not tell you?
- What do people wrongly assume after an FLCN result?
- Common questions after a positive FLCN result
The short answer
I have tested positive for FLCN. What happens now?
Nothing needs to happen today. The next steps are a genetic counselling appointment, a first kidney scan, and a plan to tell your close relatives. A positive result means you have Birt-Hogg-Dubé syndrome, or BHD. It raises your risk of kidney tumours. It is not a cancer diagnosis.
The first few weeks
Your counsellor goes through the report with you, confirms the result is a true fault and not an uncertain finding, and draws your family tree. You are then referred to a urologist for a kidney MRI. Many people also have a single chest CT to see whether they have lung cysts.
The longer term
Most of BHD care is simply regular kidney scans for life. If a small tumour appears, it is usually watched. If it grows, a surgeon removes the tumour and keeps the rest of the kidney. Most carriers go on working, marrying and raising families as before, with a scan in the diary and a folder of reports at home.
Feeling shaken after a result is normal. You do not need to decide anything this week.Your care team
Which doctors will I see after a positive result?
BHD touches three organs, but most carriers see only two or three people regularly.
Genetic counsellor
Explains the result, draws the family tree and helps plan who else should be tested. Counselling in Telugu is available.
Urologist
Your main long-term doctor. They arrange the kidney MRIs, read the results with the radiologist and decide when a tumour needs treatment.
Ask them for
- A written scan plan
- Who calls you with results
- What to do between scans
Chest doctor
Usually seen once, after the chest CT, and again only if a lung collapses or you have breathing symptoms. If you have cysts, they will explain the warning signs and which hospital to go to in an emergency.
Dermatologist
Optional. The skin bumps are harmless. See one only if the bumps bother you and you want them treated. Removal is cosmetic, and the bumps can slowly come back.
Not sure whether this applies to you?
Ask an oncologistThe first year
What does the first year after an FLCN result look like?
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Post-test counselling
You go through the report line by line. Bring a family member if you can. Write down your questions before you go.
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A baseline kidney MRI
This first scan is the one every later scan is compared with. Keep the report and the disc safe.
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A one-off chest CT
It shows whether you have lung cysts. If you do, you learn the signs of a collapsed lung and what to do about them.
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Telling close relatives
Parents, brothers, sisters and adult children are offered a test for your exact fault. A family letter from your counsellor makes this easier.
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Settling into a routine
By the end of the year you should have a scan date, a named doctor and a simple folder of reports. That routine is what BHD care is.
On your report
What do the words on a positive FLCN report mean?
- Pathogenic variant
- A change in the gene known to stop it working. This is a positive result.
- Likely pathogenic
- Very probably a real fault. It is usually acted on in the same way as pathogenic.
- Heterozygous
- One copy of the gene is faulty and the other works. This is the usual finding in BHD.
- Germline
- Present in every cell from birth, so it can be passed to children.
- Variant of uncertain significance
- A change the laboratory cannot yet classify. It is not a positive result and should not start a BHD scan plan on its own.
- Baseline scan
- The first scan in a series, used as the starting point for comparing every scan after it.
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Side by side
What changes after a positive result, and what does not?
What changes
What stays the same
Regular kidney MRI for life
Your daily life, work and diet
Knowing the signs of a collapsed lung
You can still travel and exercise
Relatives can be offered a test
Nobody has to be tested against their will
Scuba diving is usually discouraged
Marriage and children remain your choice
Stopping smoking matters more
No treatment is needed for a healthy kidney
Being straight with you
What can this page not tell you?
It cannot interpret your report. What your specific variant means is a question for the counsellor who ordered the test. They will also check whether the result needs confirming, and whether anything else on the report matters.
It cannot predict your future
Some carriers never develop a kidney tumour. Others develop several over a lifetime. Nobody can yet say which group you are in, which is exactly why the scans continue. Studies of BHD so far are small, and very few include Indian families.
Who this does not apply to
This page is for people with a pathogenic or likely pathogenic FLCN result. If your report says variant of uncertain significance, the steps here do not apply until the variant is reclassified. If the fault was found only in a tumour and not in your blood, that is a different question, covered on our targeted therapy pages.
Money and insurance
Ask before each scan whether your insurance or a government scheme covers it. India has no specific law on genetic discrimination in insurance, so talk to your counsellor before applying for new cover.
Commonly believed
What do people wrongly assume after an FLCN result?
"A positive result means I have cancer."
It means you carry a fault that raises kidney tumour risk. Most carriers are well when they get the result, and many stay that way.
"I should have my kidneys removed to be safe."
Healthy kidneys are never removed in BHD. Tumours are rare in childhood, slow-growing and treated one at a time, keeping as much kidney as possible.
"I must keep this secret from my family."
Who you tell is your choice. But close relatives have a one in two chance of carrying the same fault, and knowing gives them the option of scans.
"There is nothing I can do."
Keeping every scan, stopping smoking and knowing the signs of a collapsed lung all make a real difference. So does telling relatives.
Questions we are asked
Common questions after a positive FLCN result
Do I need to start treatment?
No. A positive result on its own needs no treatment. Care is about regular kidney scans to find any tumour early. Treatment is only discussed if a scan shows a tumour that has grown enough to need it.
How soon should I have my first kidney scan?
Usually within the next few months, if you are an adult and have not had one recently. There is rarely a need to rush it this week. Your urologist will book it and explain what the report means.
Should I tell my employer?
You are not obliged to. BHD does not usually affect your ability to work. You may want to mention it if you need time off for scans or if your job involves diving or flying aircraft.
Will this affect my children?
Each child has a one in two chance of inheriting the fault. Testing children is usually left until they are adults, because kidney tumours in childhood are very uncommon. Your counsellor can talk through timing with you.
Can I have children without passing it on?
Options exist, including testing embryos during IVF. They are costly and not right for everyone. A counsellor can explain them if you want to know, with no pressure either way.
Do I need to change my diet?
No special diet is needed for BHD. Keeping a healthy weight, controlling blood pressure and not smoking protect the kidneys, as they do for everyone.
What if my report says likely pathogenic?
In practice it is usually treated the same way as a pathogenic result, with the same scan plan and family testing. Your counsellor will confirm how your laboratory's wording should be acted on.
Who do I call first?
The counsellor or doctor who ordered the test. If you are not sure who that is, or you need a urologist, call the CION helpline 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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Sources
- GeneReviews (NCBI) — Birt-Hogg-Dubé Syndrome
- MedlinePlus Genetics — Birt-Hogg-Dubé syndrome
- National Cancer Institute — Genetics of Kidney Cancer (Renal Cell Cancer) (PDQ)
- NHS — Predictive genetic tests for cancer risk genes
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
Just received a positive FLCN result?
Tell us what your report says and where you live. We will help you book counselling and a kidney scan without delay. One helpline serves every CION centre.