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Skin leiomyomas: the first clue to HLRCC | CION Cancer Clinics
Skin leiomyomas are small, firm lumps that often ache in the cold or when touched. They are harmless in themselves. When several appear, they are one of the clearest early signs of HLRCC, an inherited condition caused by a fault in the FH gene that also raises the risk of an aggressive kidney cancer. Recognising the lumps can lead to kidney checks for the whole family. 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
- Why would a skin lump lead to a kidney scan?
- What do skin leiomyomas look and feel like?
- What happens after a dermatologist suspects a leiomyoma?
- What do the words on a skin biopsy report mean?
- What do the lumps need, and what does the kidney need?
- What this page cannot tell you
- Four things people assume about these skin lumps, and what is true
- Common questions about skin leiomyomas
The short answer
Why would a skin lump lead to a kidney scan?
Because a particular kind of skin lump, called a leiomyoma, is one of the clearest early signs of HLRCC. HLRCC is an inherited condition caused by a fault in the FH gene. It raises the risk of an aggressive kidney cancer, and the skin lumps often appear years before any kidney problem could.
What a skin leiomyoma is
Every hair on your body has a tiny muscle attached to it. That is the muscle that makes hair stand up when you are cold. A skin leiomyoma is a harmless overgrowth of that muscle. It is not cancer and it does not turn into cancer.
Why doctors take several of them seriously
One lump on its own can happen to anyone. Many lumps, especially in a cluster or a line, are rare outside HLRCC. When a dermatologist confirms several leiomyomas, a large share of those people turn out to carry an FH fault. That is why the lumps matter. They open the door to a test that can protect the kidneys of the whole family.
The lumps are harmless. The reason to follow them up is what they may be telling you about the kidneys.Recognising them
What do skin leiomyomas look and feel like?
They are easy to mistake for something ordinary, which is why they are so often ignored for years.
How they look
Small firm bumps, usually the colour of the skin or slightly pink, brown or reddish. On darker Indian skin they often look brownish rather than pink.
Usually found on
- The upper arms and shoulders
- The chest and back
- The legs, less often the face
How they feel
Many people notice pain before they notice the lump. The bumps can ache, sting or tighten when touched, when the weather turns cold, or under a cold shower or an air conditioner.
When they appear
Often in the twenties or thirties, and new ones tend to keep appearing over the years. Some people have only a few. Others have dozens across one area of skin.
What they are mistaken for
Insect bites, old acne marks, harmless fatty lumps or other common skin growths. Only a skin biopsy can say for certain.
A painful lump that reacts to cold is worth showing to a dermatologist.Not sure whether this applies to you?
Ask an oncologistFrom lump to answer
What happens after a dermatologist suspects a leiomyoma?
A small skin biopsy
The skin is numbed and a tiny piece of one lump is taken. It takes a few minutes and usually needs one or two stitches, or none.
The pathologist confirms it
Under the microscope a leiomyoma has a distinctive look. The report may also say whether the FH enzyme appears to be missing from the tissue.
A genetics referral
A counsellor takes a family history that covers skin lumps, early fibroids and kidney cancer on both sides. They explain what a test could and could not show before you decide.
A blood test for the FH gene
If you agree, a blood sample is checked for an inherited FH fault. If one is found, regular kidney MRI is arranged and relatives are offered the same test.
On your report
What do the words on a skin biopsy report mean?
- Cutaneous leiomyoma
- A harmless smooth muscle lump in the skin. Cutaneous simply means of the skin.
- Piloleiomyoma
- The commonest type, growing from the tiny muscle attached to a hair. This is the type linked to HLRCC.
- Punch biopsy
- A small round sample of skin taken with a device like a tiny cookie cutter.
- FH
- Short for fumarate hydratase, the gene and the enzyme it makes. A fault in it causes HLRCC.
- Germline
- Present in every cell from birth and able to pass to children. This is what the blood test looks for.
- Autosomal dominant
- One faulty copy from either parent is enough to pass the condition on. Men and women are affected alike.
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Two separate jobs
What do the lumps need, and what does the kidney need?
Looking after the skin
Protecting the kidney
Only needed if the lumps hurt or bother you
Needed for every FH carrier, with or without lumps
Managed by a dermatologist
Managed by an oncologist or urologist
Painful lumps can be removed or eased with medicine
Regular MRI looks for a tumour before it causes symptoms
Harmless if left alone
Missing scans is the real risk
Being straight with you
What this page cannot tell you
It cannot tell you what the lumps on your skin are. Nobody can do that from a description or a photograph. A dermatologist needs to examine them, and usually a biopsy is needed to be sure. If a gene test follows, what your specific variant means is a question for the counsellor who ordered the test.
Where the evidence is thin
Most of what is known about HLRCC skin lumps comes from specialist centres abroad. Treatments for painful lumps have mostly been studied in small groups, and none works for everyone. Very few Indian families have been reported, so how often HLRCC is behind skin lumps here is simply not known.
Who this does not apply to
Most skin bumps are not leiomyomas, and most people with one small painless lump do not need a gene test. If a dermatologist has already told you your lumps are something else, such as a fatty lump or a harmless mole, this page does not apply to you. A counsellor is as willing to say a test is unnecessary as to recommend one.
If a biopsy has confirmed leiomyomas, ask whether a genetics referral is right for you.Commonly believed
Four things people assume about these skin lumps, and what is true
"They are only skin lumps, so they cannot be important."
The lumps are harmless in themselves. Their importance is as a signpost. In HLRCC they are often the first thing anyone can see, years before a kidney tumour could appear.
"If I have them removed, the problem is solved."
Removing a painful lump can bring relief, but new ones often grow elsewhere. Removal also does nothing for the kidney risk, which carries on whether the skin is treated or not.
"No lumps means no HLRCC."
Many FH carriers never develop skin lumps. A relative with clear skin can still carry the fault, which is why testing is based on the family result, not on what the skin shows.
"Home remedies or ointments will make them go away."
No cream or home remedy shrinks a leiomyoma. Some prescribed medicines can ease the pain, and surgery can remove a few. Your dermatologist can explain which suits you.
Questions we are asked
Common questions about skin leiomyomas
Are skin leiomyomas cancer?
No. They are harmless growths of the tiny muscles attached to hairs. They do not spread and do not turn into cancer. Their importance is that, when there are several of them, they can point to HLRCC, which raises the risk of kidney cancer.
Why do the lumps hurt in the cold?
They are made of muscle, and muscle tightens in the cold. Pressure, a light touch and sometimes strong emotion can set off the same spasm. Keeping the area warm helps some people. A doctor can suggest medicines if the pain is troubling.
Can the lumps be removed?
A few painful lumps can be cut out under local anaesthetic. Laser and freezing treatments have been tried with mixed results. Because new lumps tend to keep appearing, removal suits people with a small number rather than many.
I have only one lump. Do I need a gene test?
Usually not on that alone. A single confirmed leiomyoma is taken more seriously if you also had fibroids at a young age, or a relative had kidney cancer young. Your dermatologist or counsellor will weigh the whole picture before suggesting a test.
Can men get these lumps?
Yes. Men and women develop skin leiomyomas equally. In men they are often the only visible sign of HLRCC, because men do not have fibroids to act as a second clue. That makes the skin especially important in a man's story.
My biopsy confirmed leiomyomas. What should I do next?
Ask for a referral to a genetic counsellor or clinical geneticist. Bring the biopsy report and a list of relatives with fibroids, skin lumps or kidney cancer. They will explain whether an FH test is advised and what it would mean.
If I carry the fault, will my children get the lumps?
Each child has a one in two chance of inheriting the fault. Not every child who inherits it develops lumps. The more important question is the kidney, and your counsellor will explain when testing and scans for children are usually considered.
Where can I get this checked near Hyderabad?
Start with a dermatologist for the lumps themselves. For the genetic question, your oncologist or dermatologist can refer you to a genetic counsellor. The CION helpline can point you to the right clinic, and counselling can be done in Telugu.
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 — FH gene
- 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.
Keep reading
Related pages
HLRCC explainedThe whole condition in one place, before the detailsFibroids at a young age and HLRCCThe second clue women often have alongside the skin lumpsWhy HLRCC kidney surveillance starts earlyWhy the kidney, not the skin, drives the planHLRCC in Indian familiesTesting, cost and family conversations closer to home
Talk to us
Has a skin biopsy come back as leiomyoma?
Tell us what the report says and whether anyone in the family had fibroids or kidney cancer young. We will tell you honestly whether a genetics referral makes sense and arrange it if it does. One helpline serves every CION centre.