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Other PLAIN summaries
- Asymptomatic coronary artery disease
- Bone problems
- Cancer-related fatigue
- Central precocious puberty – CPP
- Chronic pain
- Craniofacial growth problems
- Dental and oral problems
- Dyslipidemia
- Eye problems
- Gastro-intestinal problems
- Hair loss
- Health promotion
- Hearing problems
- Heart problems
- Higher risk groups
- HP axis problems
- Hypertension
- Impaired glucose metabolism and diabetes
- Kidney problems
- Liver problems
- Lower urinary tract problems
- Lung problems
- Male fertility problems, testosterone deficiency and sexual dysfunction
- Mental health problems
- Neurocognitive problems
- Obstetric problems
- Overweight and obesity
- Peripheral neuropathy
- Premature ovarian insufficiency
- Psychosocial problems
- Spine scoliosis and kyphosis
- Spleen problems
- Stroke
- Subsequent neoplasms:
- Thyroid problems
CRANIOFACIAL GROWTH PROBLEMS
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.
On this page you can find:
- Craniofacial (skull and face) growth problems
- Am I at higher risk of craniofacial growth problems?
- What are the symptoms and signs of craniofacial growth problems?
- I am at higher risk of craniofacial growth problems. What tests should I have and when?
- What happens if I have craniofacial growth problems?
- What else can I do?
- Where can I find more information?
- 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.
PLAIN version 2.1: 27/05/2024
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.
Other causes
Radiotherapy
Your treatment summary can tell you which areas of your body were irradiated. If you do not have a treatment summary or if you don’t understand what is written about the radiotherapy you received, do contact your treating hospital.
Radiotherapy is a treatment for cancer which uses high-energy radiation to destroy cancer cells and to shrink tumours. The radiation comes from a machine outside the body (external beam radiotherapy) or occasionally from radioactive material that is placed in the body near cancer cells (intracavitary or interstitial radiotherapy). The aim of radiotherapy is to treat only one area of the body, around and near the cancer or where the cancer was before it was removed by surgery and as far as possible to protect unaffected areas. For example, if you have cancer in your lung, you will have radiation only to your chest, not to your whole body.
External beam radiotherapy is painless and takes only a few minutes. It is given once or occasionally twice a day often for several weeks. A radiation beam is like an invisible light beam. The machines which produce the radiation beam can be moved so that the beam enters the body from different directions, ‘spotlighting’ on the area to be treated. This means that the tumour is given a high dose whilst normal areas get either a lower or no dose at all.
Since the early 1980’s computers and other technical advances have improved radiotherapy. Before this there were not many ways to protect normal tissues which were in the path of a radiation beam. Even now, whilst modern techniques allow doctors to target the cancer cells more precisely than older techniques, healthy cells may still get damaged. This can result in some of the late effects covered in the PLAIN summaries. It will help you and your follow up specialist to know what long term effects there might be after your radiotherapy if you and they have your treatment summary.
Your treatment summary can tell you which areas of your body were irradiated. If you do not have a treatment summary or if you don’t understand what is written about the radiotherapy you received, please contact your treating hospital.
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.
Symptoms and signs
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.
Healthy lifestyle
- Having a healthy diet
- Drinking less (or no) alcohol
- Exercising regularly
- Quitting smoking (if you smoke)
Your follow-up care specialist or general practitioner may give you additional advice tailored to your individual situation for maintaining a healthy lifestyle. For more information on taking up a healthier lifestyle, please read: Health promotion.
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: https://www.ejcancer.com/article/S0959-8049(21)00368-3/fulltext