Medical Oncologist
CION Cancer Clinics
Xeroderma pigmentosum positive: what happens next | CION Cancer Clinics
A positive XP result means one of two things. If both copies of an XP gene are faulty, your child has xeroderma pigmentosum, and daily ultraviolet protection with regular skin and eye checks starts now. If only one copy is faulty, that person is a healthy carrier. This page explains which is which, who looks after a child with XP, and what the family should do first. 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
- What happens after a positive XP result?
- Which doctors will be involved, and what does each one do?
- What should the family do first?
- The terms you will hear, in plain language
- Two faulty copies compared with one
- What this page cannot tell you
- Four things families tell us, and what is actually true
- Common questions after an XP result
The short answer
What happens after a positive XP result?
First, be clear which kind of positive you have. If both copies of an XP gene are faulty, your child has xeroderma pigmentosum and a care plan starts at once. If only one copy is faulty, the person is a carrier and their own health does not change.
If the result confirms XP
The plan rests on three things. Blocking ultraviolet light from the skin and eyes, every day, indoors and out. Regular skin and eye checks, so that any early cancer is found while it is small. And checks on nerves and hearing, because some XP genes affect those too. Nothing about this is an emergency, but starting protection this week matters more than any other single step.
If the result shows one faulty copy
A carrier does not have XP and does not need special sun protection. The result matters for family planning, for a partner's testing and for brothers and sisters who may be carriers too. It is information for the family, not a diagnosis for you.
Check the report for the word biallelic, or for two variants in the same gene. If you are unsure which applies, ask before acting on it.Who looks after your child
Which doctors will be involved, and what does each one do?
XP care is shared between several specialists. One of them, usually the dermatologist, should act as the lead so the family has one person to ask.
The skin doctor
A dermatologist examines the whole skin every few months, photographs marks to compare over time, and treats early changes before they become cancers. Parents are taught to check the skin at home in between.
The eye doctor
The eyes are sensitive to light and the surface of the eye can be damaged. An eye specialist checks the eyelids and the front of the eye regularly, and advises on glasses that block ultraviolet light.
Nerves and hearing
For gene groups linked to nerve problems, a neurologist follows development, and hearing is tested from time to time. Hearing loss found early can be supported with aids.
Your child may also need
- A vitamin D blood test and supplements
- Speech or learning support at school
The genetics team
A counsellor explains the result in your language, writes a family letter, and plans testing for brothers, sisters and parents. They also talk through options for any future pregnancy.
Not sure whether this applies to you?
Ask an oncologistThe first few weeks
What should the family do first?
Start protection straight away
Long sleeves, long trousers, a wide hat or face shield, and glasses that block ultraviolet light whenever your child is near daylight. Use a high-protection sunscreen on any skin that stays uncovered.
Fix the places your child spends time
Ultraviolet film on home, school and car windows makes a large difference. Some tube lights and lamps give off ultraviolet light, and a simple meter can check them.
Book the first skin and eye review
This sets a baseline. Every later check is compared against it, so new marks can be spotted early and treated while small.
Talk to the school
A doctor's letter helps the school arrange indoor play, a shaded seat and window film. Teachers who understand the reason are far more likely to help.
Arrange testing for brothers and sisters
Siblings should be tested soon, even if they look well. A child with XP who starts protection early usually does far better.
Words at the clinic
The terms you will hear, in plain language
- UV index
- A daily measure of how strong the sun's ultraviolet light is. In Telangana it is high for much of the year, even on cloudy days.
- UV meter
- A small hand-held device that shows whether a room, a lamp or a window lets ultraviolet light through.
- Actinic keratosis
- A rough, scaly patch caused by sun damage. It is not cancer, but it can turn into one, so it is usually treated.
- Basal cell and squamous cell cancer
- The two most common skin cancers in XP. Found small, they are usually removed completely with minor surgery.
- Melanoma
- A cancer of the pigment cells in the skin. It is less common but more serious, which is why any new or changing dark mark is checked.
- Family letter
- A letter from the genetics team naming the gene and the exact faults, so relatives can be tested for the same ones.
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Side by side
Two faulty copies compared with one
Two faulty copies (XP)
One faulty copy (carrier)
Strict ultraviolet protection, for life
Ordinary sun sense, like anyone else
Regular skin and eye checks with specialists
Routine checks for age and background
Nerve and hearing checks for some gene groups
No extra checks needed
Brothers and sisters tested soon
Partner testing before planning a pregnancy
Being straight with you
What this page cannot tell you
It cannot tell you how your own child's condition will unfold. XP varies widely, even between children with the same gene. How early protection began, how strictly it is kept up and which gene group is involved all shape the course. What your specific variant means is a question for the counsellor who ordered the test.
It cannot give you a care schedule
How often skin, eye and hearing checks are needed depends on your child's age, skin and gene group. Evidence comes mostly from small groups of patients followed in other countries, and studies from India are few. Your specialists will set the timing and adjust it as your child grows.
Who this does not apply to
If your report shows a single faulty copy, most of this page is not about you. If you have had one skin cancer in later life, or simply burn easily, you almost certainly do not have XP and do not need this plan. Skin cancer treatment decisions for adults without XP are covered elsewhere on the site.
If you are holding a report and cannot tell which kind of positive it is, do not guess. Ask the team that ordered it.Commonly believed
Four things families tell us, and what is actually true
"Sunscreen is enough on its own."
Sunscreen is one layer. Clothing, a hat or face shield, protective glasses, window film and planning time outdoors do most of the work. Sunscreen covers whatever skin is left.
"Once the child is older, the sun matters less."
The repair problem does not change with age. Damage keeps building up for life, so protection stays for life. It usually becomes easier as children learn to manage it themselves.
"As carriers, we need the same protection as our child."
Carriers have one working copy, which is enough for normal repair. Parents do not need XP-level protection, though sensible sun care is good for everyone.
"Nothing can be done, so checks are pointless."
Skin cancers found early are small and usually removed with minor surgery. Early changes can be treated before they turn into cancer. Regular checks are what make that possible.
Questions we are asked
Common questions after an XP result
Can my child go outside at all?
Yes, with protection. Many families move outdoor play to after sunset, and cover skin and eyes fully for daytime trips. The aim is to block ultraviolet light, not to keep a child shut away. A dermatologist can help you plan what is realistic for your family.
Does avoiding the sun cause other problems?
It can lower vitamin D, which the body makes using sunlight. Your child's doctor may check a blood level and suggest supplements. This is simple to manage and is not a reason to relax protection.
How are skin cancers treated in XP?
Mostly by removing them with minor surgery while they are small. Early sun-damaged patches may be frozen or treated with prescription creams. Some specialists add a tablet to reduce new cancers in children who get many, but these have real side effects and are decided case by case.
Should tobacco smoke be kept away from our child?
Yes. The same repair system also fixes some damage caused by tobacco smoke. Keeping the home smoke-free, and encouraging your child never to start smoking, is sensible advice for anyone with XP.
Will treatment be covered by a government scheme?
Cancer treatment may be covered under Aarogyasri or Ayushman Bharat if you are eligible, but protective clothing, window film and glasses usually are not. Ask the hospital's scheme desk what applies before treatment, and keep every bill and report.
Should our other children be tested?
Yes, brothers and sisters should be tested soon, even if they look well. XP is one of the conditions where childhood testing clearly helps, because protection started early changes the outlook. The genetics team can test them for the exact faults already found.
Can we have another child without XP?
Each pregnancy between two carriers has a one-in-four chance of a child with XP. Testing during pregnancy and testing embryos during IVF are both options once the family's faults are known. A counsellor can talk you through each choice without pressure.
Who do we speak to first?
The doctor who ordered the test, or a clinical geneticist, should explain the result and set up the care team. Start protection while you wait for that appointment. Call the CION helpline if you are not sure who to see first.
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
- GeneReviews (NCBI) — Xeroderma Pigmentosum
- MedlinePlus Genetics — Xeroderma pigmentosum
- National Cancer Institute — Genetics of Skin Cancer (PDQ) - Health Professional Version
- MedlinePlus Genetics — What are the different ways a genetic condition can be inherited?
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
Xeroderma pigmentosum: sun protection as treatmentThe daily routine, in practical detailTesting the family for the XP genesWhich brothers, sisters and relatives to test nextXP genes: which cancers and what riskWhat the skin and eye checks are looking forYour reproductive options explainedChoices for a future pregnancy between two carriers
Talk to us
Just received an XP result and not sure what it means?
Tell us what the report says and who ordered it. We will help you reach a genetics team and the right specialists to plan your child's care. One helpline serves every CION centre.