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Fibroids at a young age: when to think about HLRCC | CION Cancer Clinics
Most fibroids are common, harmless and not inherited. Occasionally, fibroids that come very young, in large numbers or with small painful skin lumps are the first sign of HLRCC, an inherited condition caused by a fault in the FH gene. The fibroids themselves are not the danger. The reason to recognise HLRCC is that it also raises the risk of an aggressive kidney cancer that regular scans can catch early. 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
- Can fibroids at a young age be a sign of an inherited condition?
- Which fibroid patterns make a doctor think of HLRCC?
- What happens if your doctor suspects HLRCC?
- What do the words on a fibroid or genetic report mean?
- What changes if the FH test is positive?
- What this page cannot tell you
- Four things women are told about fibroids, and what is true
- Common questions about fibroids and HLRCC
The short answer
Can fibroids at a young age be a sign of an inherited condition?
Occasionally, yes. Fibroids are very common and almost all of them are not inherited in any meaningful way. A small number of women develop them because of a fault in a gene called FH, which causes a condition known as HLRCC. What makes HLRCC matter is the kidney, not the womb.
What HLRCC is
HLRCC stands for hereditary leiomyomatosis and renal cell cancer. A leiomyoma is a harmless growth of smooth muscle. In the womb it is called a fibroid, and in the skin it shows up as small firm bumps. The same gene fault also raises the risk of an uncommon and aggressive kind of kidney cancer.
Why a gynaecologist may be the first to notice
In many families the fibroids appear long before anything else. A woman in her twenties with many fibroids, heavy bleeding and surgery already behind her may be the first person in the family whose story points towards the gene. If that clue is followed up, her parents, brothers and sisters can have their kidneys checked before any cancer has had a chance to grow.
A fibroid is not cancer. The reason to ask about HLRCC is the kidney risk that can travel with it.When to wonder
Which fibroid patterns make a doctor think of HLRCC?
No single clue proves anything. It is the combination that prompts a referral.
Young and many
Fibroids found in the twenties or early thirties, often several at once and sometimes large, that come back after they have been removed.
Often looks like
- Heavy periods from a young age
- Surgery for fibroids before starting a family
- A hysterectomy much younger than usual
Skin bumps as well
Small firm lumps on the arms, chest or back that ache in the cold or when touched. Together with early fibroids, this pairing is one of the strongest pointers to HLRCC.
Kidney cancer in the family
A parent, uncle or cousin who had kidney cancer at a young age, especially if the report used the words papillary or FH-deficient.
A flag from the laboratory
Sometimes the pathologist who examines a removed fibroid sees features under the microscope that suggest the FH enzyme is missing, and writes that on the report.
If your report mentions FH, ask for a genetics referral.Not sure whether this applies to you?
Ask an oncologistFrom clue to answer
What happens if your doctor suspects HLRCC?
The family history is drawn out
A genetic counsellor asks about fibroids, skin lumps and kidney problems on both sides of the family, with rough ages. Bring what you know, even if it is incomplete.
Old reports are gathered
If you have had fibroid surgery, the tissue block is usually stored at the hospital that did it. It can sometimes be looked at again for signs of FH loss, which helps decide whether a gene test is worth doing.
A blood test looks at the FH gene
The inherited test is done on blood, occasionally on saliva. It checks the FH gene in the cells you were born with, not in the fibroid. Results usually take a few weeks.
The result is explained in person
A counsellor goes through what was found, what it means for your kidneys, and which relatives may want testing. Nothing is decided in a hurry, and you are given time to ask questions and talk it over at home.
On your report
What do the words on a fibroid or genetic report mean?
- Leiomyoma
- The medical name for a fibroid. It means a harmless growth of smooth muscle.
- FH-deficient
- The tissue has lost the FH enzyme. On a fibroid report it is a reason to consider a gene test.
- Myomectomy
- An operation that removes fibroids but keeps the womb, so a pregnancy is still possible afterwards.
- Germline
- Present in every cell from birth, and so able to pass to children. A fault found only in the fibroid is not germline.
- Pathogenic variant
- A change in the gene known to stop it working. This is what people mean by a gene fault.
- Variant of uncertain significance
- A change the laboratory cannot yet classify. It is not a positive result and should not change your care.
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Side by side
What changes if the FH test is positive?
Fibroids with an FH fault
Fibroids without one
Regular kidney MRI is advised for life
No kidney checks are needed because of the fibroids
Parents, brothers and sisters can be tested
Relatives follow the usual advice
Surgery plans take early family wishes into account
Fibroids are managed in the usual way
Skin lumps are checked by a dermatologist
Skin needs no special attention
Being straight with you
What this page cannot tell you
It cannot tell you whether your fibroids are linked to HLRCC. That is worked out by a genetic counsellor or clinical geneticist who has your family history, your surgical reports and, if needed, a test result. What your specific variant means is a question for the counsellor who ordered the test.
Where the evidence is thin
HLRCC is rare, and most of what is known comes from specialist centres in Europe and North America. Very few Indian families have been described in medical journals, so we cannot tell you how common it is here. We think it is probably missed more often than it is found.
Who this does not apply to
Most women with fibroids do not need a gene test. If you developed one or two fibroids in your late thirties or forties, have no skin lumps and no young kidney cancer in the family, HLRCC is very unlikely. Your gynaecologist will treat your fibroids in the usual way, and no extra kidney checks are needed.
If you are unsure whether your story fits, write it down and ask your gynaecologist whether a genetics referral makes sense.Commonly believed
Four things women are told about fibroids, and what is true
"My mother and sister both had fibroids, so it must be genetic."
Fibroids are so common that several women in one family often have them by chance. What points to HLRCC is fibroids at a young age together with skin lumps or kidney cancer, not fibroids alone.
"Once the womb is removed, HLRCC does not matter any more."
A hysterectomy removes the fibroids. It does nothing about the kidney risk, which is the reason HLRCC is taken seriously. Kidney checks carry on regardless.
"Men in the family cannot be affected because fibroids only happen to women."
Men can carry the FH fault and pass it on. They can develop the skin lumps and the kidney cancer. A father or brother deserves the same conversation as a sister.
"A fibroid can turn into kidney cancer."
It cannot. The fibroid and the kidney tumour are separate growths that share one cause. The fibroid is simply the clue that sometimes shows up first.
Questions we are asked
Common questions about fibroids and HLRCC
How young is too young for fibroids?
There is no fixed line. Fibroids become more common as women move through their thirties and forties. Fibroids in the twenties, especially many of them or ones that need surgery, are unusual enough that it is reasonable to ask whether anything else is going on.
Should every woman with fibroids have an FH test?
No. Fibroids are extremely common and HLRCC is rare. Testing is considered when fibroids come unusually young, together with skin lumps, a young kidney cancer in the family, or a laboratory report suggesting FH loss.
Can my old fibroid tissue still be tested?
Often, yes. Hospitals usually keep tissue blocks from surgery for years. Ask the hospital that did your operation for the block and the report. A pathologist can look again for signs of FH loss, which helps decide whether a blood test is worth doing.
If I have HLRCC, can I still have children?
Many women with HLRCC do. Because fibroids can come early and come back, some women choose to plan a family sooner or prefer surgery that keeps the womb. Your gynaecologist and counsellor can talk through the options, including testing in a future pregnancy.
Do the fibroids in HLRCC need different treatment?
The treatments are broadly the same, including medicines and surgery. What differs is planning. Surgeons may expect more fibroids to return and will discuss that with you. A rare cancer of the womb muscle has been reported in some families, although the evidence is limited.
Who else in my family should be tested?
If you carry an FH fault, each of your parents, brothers, sisters and children has a one in two chance of carrying it. Adults are usually offered testing first. Your counsellor will explain when children are tested, because kidney checks start in childhood.
Will this affect my marriage prospects?
It is a real worry in many families. Your result is private and nobody is told without your permission. A counsellor can help you think through who needs to know, when, and how to explain that a carrier is not a patient and can live a full life.
Where do I start if this sounds like my family?
Write down who had fibroids, skin lumps or kidney cancer, and at roughly what age, on both sides. Take that list and any surgical reports to your gynaecologist or oncologist and ask about a genetics referral. The CION helpline can point you 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
- National Cancer Institute — Genetics of Kidney Cancer (Renal Cell Cancer) (PDQ)
- NHS — Fibroids
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
HLRCC explainedThe whole condition in one place, before the detailsSkin leiomyomas as the first clueThe skin lumps that often travel with early fibroidsWhy HLRCC kidney surveillance starts earlyThe kidney checks that make a diagnosis worth havingHLRCC in Indian familiesTesting, cost and family conversations closer to home
Talk to us
Had fibroids young and wondering whether it matters?
Tell us about your fibroids and any kidney cancer or skin lumps in the family. We will tell you honestly whether a genetics referral makes sense and arrange it if it does. One helpline serves every CION centre.