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HLRCC in Indian families: why it is missed and what helps | CION Cancer Clinics
HLRCC does occur in Indian families, but it is rarely recognised. The clues are early fibroids, small painful skin lumps and kidney cancer at a young age, and they are easy to dismiss one at a time. The FH gene test and the yearly kidney MRI that protect carriers are both available in India. This page explains why HLRCC is missed here and how a family can get answers. 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
- Does HLRCC happen in Indian families?
- Why is HLRCC so often missed in India?
- How does a family in Telangana get from suspicion to a plan?
- What do the terms used in genetic counselling mean?
- What families fear, and what actually applies
- What this page cannot tell you
- Four things Indian families believe about HLRCC, and what is true
- Common questions from Indian families about HLRCC
The short answer
Does HLRCC happen in Indian families?
Yes. HLRCC has been found in Indian families, although only a small number have been described in medical journals. That almost certainly reflects how rarely anyone looks for it here rather than how rare it truly is. The FH gene test is available in India, and the kidney scans that protect carriers can be done in most large cities.
What HLRCC is, briefly
HLRCC is an inherited condition caused by a fault in the FH gene. It causes harmless skin lumps and fibroids, often at a young age. It also raises the risk of an aggressive kidney cancer, which is why finding it matters. A parent with the fault has a one in two chance of passing it to each child, son or daughter.
Why Indian families are often the last to know
Each clue on its own looks ordinary. Fibroids are common, skin lumps are shrugged off, and kidney cancer in an uncle is put down to bad luck. Nobody joins the dots, because nobody asks about all three together. A family history taken carefully, in the family's own language, is often what finally brings the pattern into view.
HLRCC is not caused by diet, habits or anything a family did. It is carried in a gene from birth.Why it slips past
Why is HLRCC so often missed in India?
None of these is anyone's fault. Together they explain why families can go a generation without an answer.
Fibroids are treated, not questioned
A young woman with many fibroids may have a hysterectomy without anyone asking why they came so early. The tissue is examined, but FH is rarely checked.
Skin lumps are ignored
Small aching bumps on the arms or back are often treated with home remedies or simply lived with. Few people show them to a dermatologist.
Kidney cancer is not traced back
A relative treated for kidney cancer years ago may never have had the tumour checked for FH loss. The report may use older words such as papillary type two.
Family stories are incomplete
Relatives live far apart, older illnesses went undiagnosed, and health is not always discussed openly.
Often missing from the history
- The father's side of the family
- Relatives who died young of an unnamed illness
- Women's surgeries that were never talked about
Not sure whether this applies to you?
Ask an oncologistA practical path
How does a family in Telangana get from suspicion to a plan?
Gather what you have
Collect old discharge summaries, biopsy reports and scan reports from every relative who will share them. Hospitals usually store tissue blocks from surgery, and these can sometimes be retested.
See a genetic counsellor
Counselling can be done in Telugu, and an adult son or daughter can attend with an older parent. The counsellor draws a family tree and explains whether testing makes sense.
Test the right person first
Where possible, the relative with kidney cancer, skin lumps or early fibroids is tested first. Their result tells everyone else what to look for.
Set up care close to home
Carriers need a yearly kidney MRI. Once the plan is agreed, scans can often be done nearer to a district home, with reports reviewed by a team that knows HLRCC.
Words you will hear
What do the terms used in genetic counselling mean?
- Carrier
- Someone who has the FH fault. A carrier is not a patient and may never develop cancer.
- Cascade testing
- Testing relatives one branch at a time, starting closest to the person who tested positive.
- Consanguinity
- Marriage between blood relatives, such as cousins or an uncle and niece. It does not cause HLRCC.
- Fumarase deficiency
- A rare, serious childhood condition that can occur when a child inherits a faulty FH copy from both parents.
- Variant of uncertain significance
- A gene change the laboratory cannot yet classify. It is more common in Indian results because fewer Indians have been studied.
- Germline
- Present in every cell from birth, and able to pass to children. This is what the FH blood test checks.
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Worries we hear
What families fear, and what actually applies
The worry
What applies
Our cousin marriage caused this
One faulty copy is enough, whoever the parents married
Only the women need to worry
Men carry, pass on and can develop the kidney cancer
Everyone will find out
Your result is private and shared only with your permission
Testing is only possible abroad
FH testing and kidney MRI are both available in India
Being straight with you
What this page cannot tell you
It cannot tell you whether your family has HLRCC. That takes a counsellor, the relevant reports and usually a blood test on the right person. If you already have a result, what your specific variant means is a question for the counsellor who ordered the test.
Where the evidence is thin
Almost everything known about HLRCC comes from families in Europe, North America and East Asia. We do not know how common it is in India, whether particular FH faults run in particular communities, or whether the kidney risk here matches what is seen abroad. Studies so far are small, often a single family. We would rather say that plainly.
Who this does not apply to
Most Indian families with fibroids, or with one relative who had kidney cancer late in life, do not have HLRCC and do not need testing. The pattern that matters is early fibroids, skin lumps or young kidney cancer appearing together across relatives. Without that, a counsellor will usually reassure you.
If you are unsure whether your family's story fits, write it down and ask for an honest opinion before paying for a test.Commonly believed
Four things Indian families believe about HLRCC, and what is true
"It must come from the mother's side because of the fibroids."
The fault can come from either parent. A father can pass it to a daughter who then develops fibroids, even if he never had any symptoms himself.
"If we keep quiet, it will not affect the next generation."
Silence does not change what children inherit. It only stops relatives from having the scans that could find a kidney tumour early.
"Cousin marriage is why we have HLRCC."
HLRCC needs only one faulty copy, so it runs in families whether or not relatives marry. Related parents who both carry an FH fault do face a small chance of a child with fumarase deficiency, and a counsellor can explain that separately.
"A foreign laboratory result is always more reliable."
Accredited Indian laboratories test the FH gene reliably. What matters more is that someone qualified reads the result and explains it to you.
Questions we are asked
Common questions from Indian families about HLRCC
Can the FH gene test be done in Hyderabad?
Yes. The blood sample can be taken locally and sent to an accredited laboratory, either as an FH test alone or as part of a kidney cancer gene panel. Your counsellor will suggest which makes sense, and explain the result when it returns.
How much does testing cost, and is it covered?
Costs vary with the laboratory and whether one gene or a panel is tested. Once a fault is known in the family, testing relatives for that single fault usually costs much less. Ask the hospital's insurance desk about Aarogyasri, Ayushman Bharat or your own policy before testing.
Can counselling be done in Telugu?
Yes. Counselling in Telugu is available, and family members are welcome to attend together. Many families find it easier when an adult child joins a parent, so that everyone hears the same explanation and can ask questions.
Do we have to tell the family we are marrying into?
There is no legal requirement. It is a personal and family decision, and a counsellor can help you think it through. Many families find it helps to explain that a carrier is healthy, can be watched closely, and can have children.
Will a positive result affect insurance?
India has no dedicated law on genetic discrimination in insurance, and the position has been argued in court rather than settled by statute. Raise this with your counsellor before testing. Some people choose to arrange cover first.
We are related by marriage already. Is there anything extra to know?
If both partners carry an FH fault, a child could inherit two faulty copies and develop fumarase deficiency, a rare and serious condition in infancy. This is uncommon. A counsellor can explain whether testing both partners makes sense before a pregnancy.
How do I tell relatives who live in another district?
Many counsellors give families a short letter explaining the result in plain words. Relatives can take it to any doctor, anywhere, and ask for testing of that exact fault. A phone call from you, followed by the letter, is often enough.
Where do we start?
Write down who had fibroids, skin lumps or kidney cancer, and roughly at what age, on both sides. Gather whatever reports you can. Then ask your oncologist or gynaecologist for a genetics referral, or call the CION helpline to be pointed to the right clinic.
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) — FH Tumor Predisposition Syndrome
- MedlinePlus Genetics — Hereditary leiomyomatosis and renal cell cancer
- MedlinePlus Genetics — Fumarase deficiency
- 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.
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Talk to us
Does your family have fibroids, skin lumps and kidney cancer?
Tell us who was affected and at roughly what age. We will tell you honestly whether a genetics referral makes sense, and counselling can be done in Telugu. One helpline serves every CION centre.