Medical Oncologist
CION Cancer Clinics
Living with the visible skin changes of NF1 | CION Cancer Clinics
NF1 causes flat coffee-coloured patches, freckles in the skin folds and, from around puberty, soft lumps on or under the skin. They are benign and cannot be caught by anyone. For many people the hardest part is how others react. This page explains each kind of change, how it develops with age, what can be removed, and what helps with stares, questions and marriage talks. 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
- What skin changes does NF1 cause, and will they get worse?
- What are the different marks and lumps?
- How do the skin changes develop with age?
- Which words will you hear from skin and nerve doctors?
- What helps in the situations people describe?
- What this page cannot tell you
- What do people wrongly believe about NF1 skin changes?
- Common questions about living with NF1 skin changes
The short answer
What skin changes does NF1 cause, and will they get worse?
NF1 causes flat coffee-coloured patches, freckles in the skin folds and, later, soft lumps on or under the skin. The patches appear in early childhood, while the lumps usually start around puberty and tend to increase slowly through adult life. How many appear varies enormously, even within one family.
What they are, and what they are not
The lumps are called neurofibromas. They are benign growths of the cells that wrap around small nerves in the skin. They are not cancer, they are not an infection, and they cannot be caught by touching, sharing food or living in the same house.
Why this matters beyond the mirror
For many people with NF1 the hardest part is not the lumps themselves but how other people react. Stares, questions, rude comments and worries about marriage can weigh far more than any physical symptom. That burden is real, and it deserves the same attention from your doctors as any scan.
Feeling low about how you look is a medical concern in NF1, not vanity. Say so at your review.The four changes
What are the different marks and lumps?
Each of these behaves differently, and each is managed differently. Knowing which is which makes conversations with doctors easier.
Café-au-lait spots
Flat, light-brown patches, often the first sign of NF1 in a baby. They are harmless, do not turn into anything else and may fade a little in adult life.
Usually
- Present at birth or in the first years
- Smooth edges, even colour
- No itching or pain
Freckling in the skin folds
Small freckles in the armpits, groin or under the breasts, places the sun does not reach. They are harmless and mostly hidden by clothes.
Skin neurofibromas
Soft, rubbery lumps on or just under the skin, from pinhead size upward. They may itch or catch on clothing. They are the main visible change for most adults with NF1.
Plexiform neurofibromas
Larger, deeper growths along a nerve, present from birth. Some cause visible swelling of a limb, the face or the trunk. These need regular medical review, because a small minority can change over time.
Not sure whether this applies to you?
Ask an oncologistOver a lifetime
How do the skin changes develop with age?
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Babyhood
Café-au-lait spots are often present at birth or appear during the first years. For many families, several of these patches are what first leads a doctor to suspect NF1.
-
Early childhood
Freckles appear in the armpits and groin. A plexiform neurofibroma, if there is one, may become noticeable as a soft swelling, and it tends to grow most during childhood.
-
Puberty and the teenage years
Skin neurofibromas usually begin to appear. This often coincides with the age when a young person is most sensitive about their appearance, which makes support at this stage especially important.
-
Pregnancy
Existing lumps may grow and new ones may appear during pregnancy. Some settle afterwards, some do not. Tell your obstetrician you have NF1 early on.
-
Adult life
The number of skin lumps usually increases slowly with age. Some adults have only a few, others many hundreds. There is no reliable way to predict which pattern a child will follow.
In the clinic
Which words will you hear from skin and nerve doctors?
- Café-au-lait macule
- The medical name for a flat, coffee-coloured patch. Macule simply means a flat mark on the skin.
- Cutaneous neurofibroma
- A small neurofibroma in the skin itself. Cutaneous means belonging to the skin.
- Subcutaneous neurofibroma
- A neurofibroma just under the skin, felt as a firm lump that may be tender when pressed.
- Plexiform neurofibroma
- A larger neurofibroma growing along a nerve and its branches, often deeper than it looks from outside.
- Excision
- Cutting a lump out surgically. It usually leaves a small scar in place of the lump.
- MEK inhibitor
- A tablet or capsule medicine that can shrink some plexiform neurofibromas that cannot be safely removed by surgery.
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Side by side
What helps in the situations people describe?
The situation
What often helps
Strangers stare or ask what is wrong
A short, practised reply, then change the subject
Relatives fear it is catching
A doctor's letter saying NF1 cannot spread by contact
A child is teased at school
A meeting with the class teacher and a simple explanation
A lump rubs on a belt or bra strap
Ask about removal, which is reasonable for comfort
Marriage talks are under way
Honest disclosure, helped by a counsellor's explanation
Being straight with you
What this page cannot tell you
It cannot tell you how many lumps you or your child will develop, or which ones are worth removing. That depends on where they are, whether they hurt or catch, and how you feel about them. A dermatologist or plastic surgeon who knows NF1 can go through the options lump by lump.
It cannot tell you whether a lump has changed
Most lumps stay benign for life. A lump that grows quickly, becomes hard, causes pain that wakes you at night, or brings new weakness in a limb needs a doctor soon. Those signs are covered on the page about recognising when a lump has changed. What your own genetic result means is a question for the counsellor who ordered the test.
Who this does not apply to
NF2 and schwannomatosis cause very few visible skin changes, and this page does not describe them. Café-au-lait spots on their own are also common in people without NF1. One or two patches in a healthy child are usually nothing to worry about.
Removing a lump for appearance alone may be treated as cosmetic by insurers. Ask before you book.Commonly believed
What do people wrongly believe about NF1 skin changes?
"The lumps are catching, like a skin infection."
NF1 is a genetic condition present from conception. It cannot spread by touch, by sharing food, clothes or a bed, or by living together. It is sometimes mistaken for leprosy, which it is not.
"Something the mother did in pregnancy caused it."
NF1 comes from a fault in one gene. About half of people with NF1 inherited it from a parent, and the rest have a new fault that arose by chance. Nothing eaten, done or believed in pregnancy causes it.
"Cutting a lump out makes more of them grow."
Removing a lump does not trigger new ones. New lumps appear over time because of NF1 itself, whether or not any are removed. A removed lump rarely grows back in the same place.
"Every lump is a cancer waiting to happen."
Skin neurofibromas are benign and almost never become cancer. The concern is a small minority of deeper plexiform growths, which is why those are watched and why a changing lump should be checked.
Questions we are asked
Common questions about living with NF1 skin changes
Can the skin lumps be removed?
Yes. Troublesome lumps can be cut out under local anaesthetic, and many small ones can sometimes be treated with laser or a heated needle. Each method leaves some mark. The choice depends on the lump's size, place and number.
Is there a medicine that shrinks the lumps?
Medicines called MEK inhibitors can shrink some plexiform neurofibromas that cannot be safely removed. They are used for growths causing pain or problems, not for appearance alone. Medicines for the small skin lumps are still being studied.
Will my child's spots turn into lumps?
No. Café-au-lait spots stay as flat patches. Lumps are a separate change that usually starts around puberty. Having many spots does not mean a child will have many lumps later.
Should I tell my future spouse's family about NF1?
Honest disclosure is usually the better path, and a counsellor can help you explain it clearly. Each child of a parent with NF1 has a one in two chance of inheriting it, which your partner deserves to know. How severe it would be cannot be predicted.
Does sun exposure make the spots worse?
Sun can darken café-au-lait spots a little, as it darkens any skin, but it does not create lumps or make NF1 progress. Ordinary sun sense is enough.
I feel too embarrassed to go out. Is help available?
Yes. Feeling this way is common with visible conditions, and counselling helps. Ask your doctor to refer you to a psychologist or counsellor. Talking to others with NF1, including through patient groups, also helps many people feel less alone.
Will a lump in pregnancy harm the baby?
Skin lumps that grow in pregnancy do not harm the baby. Your obstetrician should still know you have NF1, because blood pressure needs watching and a few deeper growths may need attention.
Who should I see about my skin changes?
A dermatologist for skin lumps, a plastic surgeon for removal, and a doctor who follows your NF1 overall. If you are not sure where to begin, call the CION helpline and someone will direct 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)
Medical Oncologist
Medical Oncologist
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Sources
- NHS — Neurofibromatosis type 1
- GeneReviews (NCBI Bookshelf) — Neurofibromatosis 1
- MedlinePlus Genetics — Neurofibromatosis type 1
- National Institute of Neurological Disorders and Stroke — Neurofibromatosis
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
Recognising when an NF1 lump has changedThe signs that mean a lump needs checking soonNF1 surveillance through childhoodThe regular checks a child with NF1 needsLearning and development in NF1The part of NF1 that is often less visibleNF1, NF2 and schwannomatosis: three different conditionsHow the three conditions differ
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