Supportive care for eye cancer

Supportive care helps people meet the physical, practical, emotional and spiritual challenges of eye cancer. It is an important part of cancer care. There are many programs and services available to help meet the needs and improve the quality of life of people living with cancer and their loved ones, especially after treatment has ended.

Recovering from eye cancer and adjusting to life after treatment is different for each person, depending on the type and stage of the cancer, the type of treatment and many other factors. The end of cancer treatment may bring mixed emotions. Even though treatment has ended, there may be other issues to deal with, such as coping with long-term side effects. A person who has been treated for eye cancer may have the following concerns.

How a person feels about themselves is called self-esteem. Body image is how a person sees their own body. Eye cancer and its treatments can affect a person’s self-esteem and body image. Often this is because cancer or cancer treatments may result in body changes, such as:

• scars
• changes to how the eye or face look (your appearance)
• loss of an eye

Some of these changes can be temporary, others will last for a long time and some will be permanent.

Surgery for eye cancer may change the way you look. The amount and type of change will depend on the type of eye surgery that is done. An enucleation removes the eye. An orbital exenteration removes the eyeball, eyelid, muscles, nerves and fat in the eye socket (orbit). The changes to how you look can affect your self-esteem and body image. It can also affect how you think others see you.

For many people, body image and how they think other people see them is closely linked to self-esteem. It may be a real concern for them and can cause considerable distress. They may be afraid to go out, afraid others will reject them or feel angry or upset, even if the effects of treatment may not show on the outside of the body.

It takes time to adjust to a change in how you look and to learn how to cope with these changes. You may find the following tips helpful:

• Scars usually fade and many become less noticeable over time.
• Use makeup to conceal scars or skin grafts that may be a different colour.
• Wear sunglasses, glasses with different coloured lenses or regular eyeglasses to help disguise the differences in the eyes until you feel more comfortable with how you look.
• An artificial eye (ocular prosthesis) looks similar to the other eye, but it may not move as much.
• You may find it helpful to speak with someone else who has had a similar experience.
• Share your feelings with people close to you.
• Talk to your partner if you have fears with being intimate and having sex.

Find out more about self-esteem and body image and sexuality and cancer.

Changes in vision can happen as a result of eye cancer or its treatment. Problems with eyesight can range from very minor changes in vision to complete loss of sight in an eye. The degree of vision change depends on the type of eye cancer and how much of the eye the cancer affects.

Some treatments for eye cancer can help save vision. But sometimes the eye has to be removed or vision is damaged with other treatments such as radiation therapy.

Find out more about vision changes and services to support people with vision changes.

An artificial eye is used to replace an eye that has been removed with surgery. After the eye is removed, a plastic disc (called a conformer) is placed in the eye socket to keep its shape. Some people may have the feeling that the eye is still there or have visual hallucinations. This is normal and temporary.

About 3–6 months after surgery, you will be fitted for an artificial eye. A mould will be made of the eye socket. The artificial eye will be made to fit the socket and painted to match the colour of the other eye. Until the permanent artificial eye is made, a temporary one may be used. An artificial eye may be held in place with an orbital implant (a device surgically attached to the eye socket).

It takes time to adjust when cancer or its treatments affect your eyes and vision. Some people find it helps to talk to others about changes to their sight or appearance. You may also be coping with new sensations, such as feeling like the eye is still there when it has been removed. Talk to your healthcare team about the support groups available to help you cope with your emotions and daily life with an artificial eye.

Once the eye socket is healed and your artificial eye is in place, you can return to most of your daily activities. You can leave the prosthesis in place when you are sleeping. You can also wear eye makeup, if you want to.

Your healthcare team may recommend that you wear protective eyewear to help protect your functional eye. Examples of protective eyewear include safety glasses, goggles and face guards, visors or face shields on helmets. It is especially important to protect your eye when you play sports. Wear goggles when you go swimming. Remove your artificial eye or wear protective goggles when you dive or go skiing.

Talk to your doctor about how having an artificial eye may affect driving and other daily activities. When you have an artificial eye, your range of vision is affected. This means that you will need to turn your head more to check from side to side when driving or crossing a road.

You will need to tell your provincial or territorial driver-licensing authority and your motor vehicle insurance company that you have an artificial eye. They will likely want to test your vision. They may also place restrictions on your driving, such as only allowing you to drive for short periods of time to allow your functioning eye to rest.

Sometimes doctors have to remove the eyeball, eyelid, muscles, nerves and fat in the eye socket. If cancer has spread to the bones of the eye socket, some bone may also be removed. This type of surgery is called an orbital exenteration.

Today’s surgical techniques and reconstructive surgery methods help lessen the changes to how the face looks after surgery. Advances in plastic and reconstructive surgery allow skin and bone grafts to help repair the areas of the face affected by surgery. But if reconstructive surgery can’t help with how your face moves or how it looks, or if reconstruction isn’t an option, you may need a facial prosthesis. Each prosthetic device is designed and custom fit for the person who will be using it. A new facial prosthesis needs to be remade about every 2 years. It may take a few weeks or even months before you get a facial prosthesis.

People who are treated for eye cancer may worry that the cancer will come back. It is important to learn how to deal with these fears to maintain a good quality of life.

In addition to the support offered by the treatment team, a mental health professional, such as a social worker or counsellor, can help you learn how to cope and live with a diagnosis of eye cancer.

Find out more about fear of the cancer coming back.

See a list of questions to ask your doctor about supportive care after treatment.