Craniofacial growth problems

As we grow from children into adults, the shape of our head and face changes. Sometimes problems can arise during this process. This can result in a smaller and/or uneven (asymmetrical) face. Some cancer treatments can increase the risk of this happening.

What are growth abnormalities of the face and head?

As you grow from a child to an adult, the shape of your face and head changes. Sometimes problems arise during growth that prevent the face and head from developing properly.

Do I have an increased risk of growth abnormalities of my face and head?

Everyone, including people who have never had cancer, can have growth abnormalities of the face or head. However, certain cancer treatments can increase the risk.

The following treatments can increase the risk of growth abnormalities of the face and head, especially when given at a young age:

Radiation to the face or an area that includes the face, especially at high doses
Surgery in the face

You can check your treatment summary to see if you have had one or more of these treatments. If you do not have a summary, you can contact the LATER clinic or the hospital where you were treated. Growth abnormalities of the face and head do not always result from the treatment; there may be other causes, such as congenital abnormalities, accidents, or infections.

What are the signs and symptoms of growth abnormalities of the face and head?

Certain signs and symptoms indicate growth abnormalities of the face and head. Even if you do not currently have these signs or symptoms, it is important to recognize them in case they occur.

Signs and symptoms of growth abnormalities of the face and head include:

Your face does not grow normally and appears small or asymmetrical
One or both eyes and the area around your eye do not develop properly and remain small

Growth abnormalities of the face or head can cause problems with teeth, speaking, swallowing, and breathing, as well as psychosocial issues. If you recognize any of these signs or symptoms, contact your GP or LATER physician.

What examinations are needed and when if I have an increased risk of growth abnormalities of my face and head?

If you have an increased risk of growth abnormalities of the face and head, the advice is:

Have a physical examination at least once a year until you have finished growing, and then at least every 5 years

What happens if I have growth abnormalities of my face and head?

If you have growth abnormalities of the face or head, your GP or LATER physician will likely refer you to a specialist. Depending on your symptoms, this may include:

Craniofacial surgeon (specialist in correcting abnormalities of the face, head, and jaw)
ENT specialist (ear, nose, and throat doctor)
Psychologist
Dentist
Ophthalmologist

The specialist will discuss treatment options with you.

What else can I do?

Living with (an increased risk of) a growth abnormality of the face or head can be challenging. Talking with friends and family can help. Contact with people in a similar situation can also be supportive, for example through a patient organization such as VOX, part of the Dutch Childhood Cancer Organization.

Take good care of yourself. While this does not reduce the likelihood of growth abnormalities of the face or head, maintaining a healthy lifestyle remains important. Also, take care of your mental health. Small changes can positively affect your physical and mental well-being. It is important to know that you may develop growth abnormalities in your face or head and to recognize the signs and symptoms.

If you have questions or concerns after reading this information, contact your GP or LATER physician.

Where can I find more information?

On this LATER website, you can also find information about:

Healthy lifestyle
Mental well-being

The PanCare Plain Language Summaries provide links to reliable information in English. You can search online for information about growth abnormalities of the face or head, but note that it may not always be up-to-date or accurate.

Disclaimer

This information is based on the patient-friendly summary of the guideline, prepared by the PanCare Plain Information Group, and has been adapted where necessary to the Dutch LATER guideline. Do not rely solely on this information for symptoms or signs; consult your GP, LATER physician, or specialist.