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.

Eye problems

The eyes are made up of multiple parts, including the lens, retina and the nerve of the eye (optic nerve). When light falls on to the lens, it passes through the eye and creates an image on the retina, which is located at the back of the eye. The cells in the retina then transform this image into signals that travel through the optic nerve to the brain. The brain then turns this signal back into an image.

Sometimes problems can occur with the eyes, causing discomfort and/or poor(er) vision. Eye problems include:

  • Cataract, cloudy patches develop in the lens. This makes it more difficult to see clearly.
  • Damage to the tear ducts, which can cause the eyes to water more.
  • Xerophthalmia, where the eyes do not produce enough tear fluid caused by for example a deficiency of vitamin A in the body.
  • Keratitis, an inflamed cornea.
  • Telangiectasias, damage to the eyes’ tiny blood vessels.
  • Retinopathy, damage to the retina.
  • Optic nerve damage.
  • Chronic painful eye, where the eyes are chronically painful and/or uncomfortable
  • Damage to the lacrimal gland, the eyes can become dry and damaged over time.

The eye
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Am I at higher risk of eye problems?

Anyone, including people who have never had cancer treatment, may develop eye problems. However, there are some cancer treatments that may increase the risk of having eye problems. The problems that can occur depends on the type of cancer treatment received.

The following treatments can increase the risk of eye problems:

  • Any dose of radiotherapy to the eye(s) and eye socket(s) or an area that includes the eye
  • Radioactive iodine (I-131), a type of internal radiotherapy. In particular, this treatment increases the risk of shrinking of the tear ducts.
  • Prolonged corticosteroids. In particular, this treatment increases the risk of cataract.

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 eye problems, it does not always mean that this is caused by your cancer treatment. Eye problems may have other causes.

What are the symptoms and signs of eye problems?

There are symptoms and signs that can tell you if you might have eye 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.

These symptoms and signs may suggest that you have eye problems:

  • Blurry or distorted vision
  • Sensitivity to light
  • Pain, itching or a burning feeling in one or both eyes
  • Watery eyes
  • Reduced or loss of vision

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

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

If you are at higher risk of eye problems, you are advised to:

  • Have an eye examination at least every 5 years.
  • Discuss your medical history and whether you experience(d) any symptoms and signs of eye problems with your general practitioner or follow-up care specialist at least every 5 years.

What happens if I have eye problems?

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

  • Ophthalmologist (physician specialised in the eyes)
  • Optician (specialist for glasses and contact lenses)

The specialist may discuss different treatment options with you.

What else can I do?

Knowing that you may be at increased risk of eye 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 eye 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 eye problems and that you know the symptoms and signs. If you have any further questions or if 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 eye 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:

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 “Eye 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.