ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of childhood cancer and its treatment. This page includes several links outside of this guide to other sections of this website. Use the menu to see other pages.
Every cancer treatment can cause side effects or changes to your child’s body and how he or she feels. For many reasons, people do not experience the same side effects even when given the same treatment for the same type of cancer. This can make it hard to predict how your child will feel during treatment.
As your family prepares to start cancer treatment, it is normal to fear treatment-related side effects. It may help to know that your child's health care team will work to prevent and relieve side effects. Doctors call this part of cancer treatment “palliative care” or "supportive care." It is an important part of your child’s treatment plan, regardless of his or her age or the stage of disease.
Coping with physical side effects
Common physical side effects from each treatment option for retinoblastoma are described within the Types of Treatment section. Learn more about side effects of cancer and its treatment, along with ways to prevent or control them. Changes to your child’s physical health depend on several factors, including the cancer’s stage, the length and dose of treatment, and your child’s general health.
Sometimes, physical side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment late effects. Treating long-term side effects and late effects is an important part of care for childhood cancer survivors. Learn more by reading the Follow-up Care section of this guide or talking with your child’s doctor.
Coping with emotional and social effects
Your family can have emotional and social effects as well as physical effects after a cancer diagnosis. This may include dealing with difficult emotions, such as anxiety or anger, or managing stress. Sometimes, patients and their families have problems expressing how they feel to their loved ones, or people do not know what to say in response.
Patients and their families are encouraged to share their feelings with a member of their health care team. You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your family’s needs.
Coping with financial effects
Cancer treatment can be expensive. It is often a big source of stress and anxiety for families dealing with a cancer diagnosis. In addition to treatment costs, many people find they have extra, unplanned expenses related to their child’s care. Families are encouraged to talk about financial concerns with a member of their health care team. Learn more about managing financial considerations in a separate part of this website.
Caring for a child with cancer
Family members and friends often play an important role in taking care of a person with retinoblastoma. This is called being a caregiver. As a parent or guardian, you are the primary caregiver for your child. However, friends and family members can give your family valuable support, even if they live far away.
When your child has retinoblastoma, you may have an additional range of responsibilities. These may include giving medications or managing symptoms and side effects. However, it is important to seek help from others. Below are some of the responsibilities your family or friends could help with:
Providing short-term care for your child
Giving support and encouragement
Assisting with meals or household chores
Helping with insurance and billing issues
Learn more about caregiving.
Talking with your child's health care team about side effects
Before starting treatment, talk with your child’s doctor about possible side effects. Ask:
Which side effects are most likely?
When are they likely to happen?
What can we do to prevent or relieve them?
Be sure to tell your child's health care team about any side effects that happen during treatment and afterward, too. Tell them even if you do not think the side effects are serious. This discussion should include physical, emotional, and social effects of cancer.
Also, ask how much care your child may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan.
The next section in this guide is Follow-up Care. It explains the importance of checkups after your child finishes cancer treatment. Use the menu to choose a different section to read in this guide.