This page is part of the PanCare PLAIN summaries about late effects and recommendations for long-term follow-up care for survivors of childhood, adolescent, and young adult cancer. Click here, for more information on the PLAIN summaries.

Craniofacial (skull and face) growth problems

As we grow from childhood to adulthood the shape of our head and face changes.

Sometimes problems can occur during this process. This can result in a smaller and/or uneven (asymmetrical) face.

Am I at higher risk of craniofacial growth problems?

Anyone, including people who have never had cancer treatment, may have craniofacial growth problems. However, there are some cancer treatments that may increase the risk of having craniofacial growth problems.

The following treatments can increase the risk of craniofacial growth problems, especially if given at a young age:

  • Radiotherapy to the face or an area that includes the face, especially after higher doses
  • Surgery to the face

You can find out if you have received any of these treatments by looking at your treatment summary. If you do not have a treatment summary or if you have any questions, do contact your treating hospital.

If you experience craniofacial growth problems, it does not always mean that this is caused by your cancer treatment. Craniofacial growth problems may have other causes. Some people are born with reduced or uneven growth of their face. Accidents to or infections of the face and skull are another cause of reduced or uneven growth.

What are symptoms and signs of craniofacial growth problems?

There are symptoms and signs that may suggest you could be experiencing craniofacial growth problems. You might not have these symptoms and signs at the moment, but it is important to be aware of them in case they may develop in the future.

Signs of craniofacial growth problems are:

  • Your face is not growing normally, it might be small or uneven (asymmetric)
  • One or both eyes and the area around the eye does not grow properly and is small. This is called ‘orbital hypoplasia’.

Psychological difficulties can be common when the skull and/or face has not grown normally. Craniofacial growth problems can also cause difficulties with speaking, eating and breathing and dental abnormalities.

If you recognise any of these signs in yourself, please contact your general practitioner or follow-up care specialist.

I am at higher risk of craniofacial growth problems. What tests should I have and when?

If you are at higher risk of craniofacial growth problems, it is advised to:

  • Have a physical exam done at least every year until growth is completed, and then at least every 5 years.

What happens if I have craniofacial growth problems?

If you have craniofacial growth problems, your general practitioner or follow-up care specialist will probably refer you to a specialist. Depending on the symptoms and/or signs you experience, you may be referred to a:

  • Reconstructive craniofacial specialist (surgeon who can try to correct deformities of the face, skull and jaw)
  • Ear, Nose, Throat surgeon
  • Psychologist (physician who specialises in mental health)
  • Dentist (in case of any associated dental problems)
  • Ophthalmologist (physician who specialises in eye problems)

The specialist may discuss different options with you.

What else can I do?

Knowing that you may be at increased risk of craniofacial growth problems can be difficult. Talking to friends and family can be helpful as well as specialist counselling and/or contact with support groups, such as patient organisations. For more information on taking care of your mental health, please read: Mental health problems.

Although it may not lower your risk of craniofacial growth problems, it is still important to live a healthy lifestyle. Taking care of your mental health may be beneficial; even small changes to your lifestyle can have a positive impact on both your physical and mental health. For more information on taking up a healthier lifestyle, please read: Health promotion.

It is important that you are aware of the possibility of developing craniofacial growth problems and that you know the symptoms and signs. If you have any further questions or the information in this brochure concerns you, please contact your general practitioner or follow-up care specialist.

Where can I find more information?

You may find more information about craniofacial growth problems online. However, it is important to be aware that this information is not always up to date or accurate.

Some sources of further information are:

  • Changing Faces: Here you can find more information about support for everyone with a condition that make their face look differently
  • Headlines: Craniofacial support: Here you can find more information about craniofacial conditions and about support for those affected by it
  • Children’s Craniofacial Association (CCA): Here you can find more information about support for those affected by craniofacial conditions

On this website, you can also find more information related to this topic:

Please note

This PLAIN summary is based on the PanCareFollowUp guideline about “Craniofacial growth problems” [1], which is based on the consensus of different national guidelines.

While the PanCare PLAIN information group strives to provide accurate and complete information that is up-to-date as of the date of publication, you can check with your general practitioner or follow-up care specialist if this summary reflects the most up-to-date information available and whether it is relevant for you.

Please do not rely solely on this information. It is best to also seek the advice of a qualified medical practitioner if you have questions regarding a specific medical condition, disease, diagnosis or symptom.

No warranty or representation, expressed or implied, is made concerning the accuracy, reliability, completeness, relevance, or timeliness of this information. PanCare has produced the English version and PanCare is not responsible for the translated versions of this summary.

The PanCare materials are free to use for anyone aiming to inform about late effects and long-term survivorship care. However, no financial advantage may be achieved. All communication should reference PanCare and link to the PanCare website.

[1] van Kalsbeek, R. et al. (2021) European PANCAREFOLLOWUP recommendations for surveillance of late effects of childhood, adolescent, and Young Adult Cancer, European journal of cancer. Available at: