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CION Cancer Clinics
FH mutation: which cancers, and how high is the risk? | CION Cancer Clinics
An inherited FH fault raises the chance of three things: skin bumps, early fibroids in women, and an aggressive kind of kidney cancer. The first two are common in carriers and are not cancer. Kidney cancer affects a minority, but it is the risk every surveillance plan is built around. This page sets out each risk honestly, including where the evidence is thin. 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
- Which cancers does an FH fault actually raise?
- What are the risks, and how serious is each?
- When do the risks tend to appear?
- What do the risk words on an FH report mean?
- What should raise concern, and what is reassuring?
- What this page cannot tell you
- Four things families believe about FH risk, and what is true
- Common questions about FH cancer risks
The short answer
Which cancers does an FH fault actually raise?
The main cancer risk is kidney cancer. Most carriers never develop it, but the chance is well above that of the general population, and the tumour behaves more aggressively than ordinary kidney cancer. The other common features, skin bumps and womb fibroids, are not cancer at all.
Why we do not give you a single percentage
Published lifetime risk figures for kidney cancer vary widely between studies. Early figures came from families referred to specialist centres because several relatives were ill, which tends to push the number up. Later studies that tested wider groups found lower figures. Almost no data come from Indian families.
What that means for you
The honest summary is a substantially raised lifetime risk of kidney cancer, higher than the general population, affecting a minority of carriers. That is enough for experts to recommend a yearly kidney scan for every carrier, whatever the true figure turns out to be.
The kidney risk applies to every carrier, men and women alike.One by one
What are the risks, and how serious is each?
Two are common and harmless. One is uncommon and serious. One is still uncertain.
Kidney cancer
The serious risk. The tumour is called FH-deficient renal cell carcinoma. It is usually a single tumour in one kidney, and it can spread while still small.
What sets it apart
- Often found in younger adults
- Few symptoms until it has grown
- Rarely safe to watch and wait
Womb fibroids
Most women carriers develop fibroids, earlier and in greater number than other women. They cause heavy periods, pain and sometimes difficulty conceiving. Many women need surgery for them at a younger age than usual.
Skin bumps
Most carriers develop firm bumps in the skin, often in clusters, called cutaneous leiomyomas. They can hurt in the cold or when touched. They are not cancer.
Uncertain risks
A rare cancer of the womb muscle, called leiomyosarcoma, and adrenal tumours called phaeochromocytoma and paraganglioma have been reported in carriers. Studies so far are small, and nobody yet knows how much the risk is raised.
Not sure whether this applies to you?
Ask an oncologistAcross a lifetime
When do the risks tend to appear?
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Childhood
Kidney tumours in children are rare but have been reported. That is why scans usually begin before the teenage years, from around the age of eight to ten.
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Late teens and twenties
Skin bumps often start to appear. Some women notice heavy periods from fibroids earlier than their friends did.
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Thirties and forties
Fibroids are often at their most troublesome. Many women face decisions about surgery, and about whether to try for children first.
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Any adult age
Kidney cancer can occur at any point in adult life. It often appears earlier than ordinary kidney cancer, which is mostly a disease of older people.
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Later life
The kidney risk does not switch off. Scans continue for life, even after a hysterectomy and even in a carrier who has never had a single symptom.
On your report
What do the risk words on an FH report mean?
- Lifetime risk
- The chance of developing a condition at some point across a whole life, not in any one year.
- Penetrance
- How often a gene fault actually leads to a condition across everyone who carries it. For FH it is high for skin and fibroids and much lower for kidney cancer.
- Variable expressivity
- The same fault causing different effects in different relatives. One sister may have many skin bumps and another none.
- FH-deficient renal cell carcinoma
- The kidney cancer linked to FH. Older reports may call it type 2 papillary kidney cancer.
- Leiomyosarcoma
- A rare cancer of smooth muscle, in the womb or elsewhere. It is not the same as a fibroid, which is harmless.
- Paraganglioma
- A rare tumour of nerve tissue, often near the adrenal glands. Its link to FH is still being studied.
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Side by side
What should raise concern, and what is reassuring?
Worth raising with a doctor
Usually reassuring
Several fibroids needing surgery before your mid-thirties
A single fibroid found in your forties or fifties
Painful skin bumps in clusters, in you or a parent
Ordinary moles or skin tags
Kidney cancer in a relative diagnosed young
Kidney cancer in one older relative who smoked
A tumour report that says FH-deficient
A kidney tumour of the common clear cell type
Being straight with you
What this page cannot tell you
It cannot tell you your own risk. That depends on your exact variant, your family history and whether you are already on a scan schedule. A genetic counsellor or clinical geneticist can put those together. This page cannot.
Where the evidence is thin
Most FH research comes from Europe and North America, and the families studied were often unusually affected. Figures for India are not yet available. The links to womb muscle cancer and adrenal tumours rest on small numbers. We would rather tell you that than quote a confident number.
Who this does not apply to
If you have fibroids but no skin bumps, no young kidney cancer in the family and no FH result, this page is not about you. Fibroids are very common and almost always ordinary. A relative who tested negative for the family's known FH fault has the same risk as anyone else.
Commonly believed
Four things families believe about FH risk, and what is true
"An FH fault means I will get kidney cancer."
Most carriers never do. The fault raises the chance well above average, and the yearly scan exists to find any tumour early if one does appear.
"Only women are at risk, because it is about fibroids."
Men carry the same kidney risk and can develop the skin bumps. They also pass the fault to their children. Leaving men out of the family tree hides the pattern.
"My fibroids were removed, so my risk is gone."
Surgery removes the fibroids that were there. It does not change the gene or the kidney risk, and kidney scans still continue.
"My uncle's kidney cancer was the ordinary kind, so FH is ruled out."
Only if the tumour was properly typed. Older reports may not have checked for loss of the FH enzyme. A pathologist can sometimes re-examine a stored tissue block from the original surgery.
Questions we are asked
Common questions about FH cancer risks
What is the lifetime risk of kidney cancer with an FH fault?
Studies disagree, so we do not quote one figure. What they agree on is a substantially raised risk, higher than the general population, affecting a minority of carriers. That is why every carrier is offered a yearly kidney scan rather than waiting for symptoms.
Are FH kidney tumours worse than ordinary kidney cancer?
They tend to be. FH-deficient tumours can spread while still small, at a size where other kidney tumours would usually be watched. Doctors therefore recommend dealing with any suspicious FH kidney lesion promptly rather than waiting to see if it grows.
Do the skin bumps turn into cancer?
No, not in any usual sense. They are harmless growths of smooth muscle. They can be painful, and a dermatologist can remove troublesome ones or suggest medicines to ease the pain. Their real value is as a warning sign that leads a family to testing.
Will my fibroids affect my chances of having children?
They can. Many large fibroids may make it harder to conceive or carry a pregnancy. Some women have fibroids removed while keeping the womb. Talk to a gynaecologist who knows about your FH result before any surgery, so fertility is part of the plan.
Is there a risk of other cancers, like breast or bowel?
No clear link has been shown with the common cancers. The known risks are the kidney, the womb and the skin, with smaller, uncertain links to rare tumours. If your family also has several bowel or breast cancers, mention it, because a second explanation may be needed.
Does smoking or weight change my FH kidney risk?
No study has shown how much lifestyle changes the FH kidney risk specifically. Smoking and obesity do raise ordinary kidney cancer risk, so avoiding tobacco and keeping a healthy weight are sensible. They do not replace the yearly scan.
My result is a variant of uncertain significance. Do these risks apply?
Not automatically. A variant of uncertain significance, often shortened to VUS, means the laboratory does not yet know whether the change matters. Plans are usually based on your family history instead. Ask your counsellor how you will hear if it is reclassified.
Who can explain my own risk?
A genetic counsellor or clinical geneticist, with your report and your family tree in front of them. Your oncologist or urologist can explain what any scan has shown. Call the CION helpline if you are not sure where to start, and someone will guide you.
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) — FH Tumor Predisposition Syndrome
- MedlinePlus Genetics — Hereditary leiomyomatosis and renal cell cancer
- National Cancer Institute — Genetics of Kidney Cancer (Renal Cell Cancer) (PDQ)
- Cancer Research UK — Inherited cancer genes and increased cancer risk
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
The FH gene: what it does and why it mattersHow an energy enzyme ends up causing tumoursSurveillance for FH carriersThe checks that manage each of these risksFH and aggressive kidney cancerWhy a small kidney lesion is taken seriouslyFH positive: what happens nextThe first steps after a positive result
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Bring your report and your family history, and we will help you reach a genetic counsellor who can explain your own risk. One helpline serves every CION centre.