ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of childhood cancer and its treatment. Use the menu to see other pages.
Every cancer treatment can cause side effects or changes to your child’s body and how they feel. 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. This part of cancer treatment is called palliative care or supportive care. It is an important part of your child’s treatment plan, regardless of their age or the stage of disease.
Coping with physical side effects
Common physical side effects from each treatment option for retinoblastoma are described in 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.
It is important to discuss any new side effects or changes in existing side effects with your child’s health care team. Providing this information helps them find ways to treat or manage the side effects so your child feels more comfortable and can potentially keep any side effects from worsening.
You may find it helpful to keep track of your child’s side effects so you are prepared to discuss any changes with the health care team. Learn more about why tracking side effects is helpful.
Sometimes, side effects can last after treatment ends. Doctors call these long-term side effects. Side effects that occur months or years after treatment are called 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 after a cancer diagnosis. This may include dealing with a variety of emotions, such as anxiety, sadness, or anger, or managing stress. Sometimes, people find it difficult to express how they feel to their loved ones. Some have found that talking to an oncology social worker, counselor, or member of the clergy can help them develop more effective ways of coping and talking about cancer.
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 the costs of cancer care
Cancer treatment can be expensive. It can be a 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.
Coping with barriers to care
Some groups of people experience different rates of new cancer cases and experience different outcomes from their cancer diagnosis. These differences are called “cancer disparities.” Disparities are caused in part by real-world barriers to quality medical care and social determinants of health, such as where a person lives and whether they have access to food and health care. Cancer disparities more often negatively affect racial and ethnic minorities, people with fewer financial resources, sexual and gender minorities (LGBTQ+), adolescent and young adult populations, older adults, and people who live in rural areas or other underserved communities.
If your child is having difficulty getting the care they need, talk with a member of the health care team or explore other resources that help support medically underserved people.
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?
When and who should we call about side effects?
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, social, and financial effects of cancer.
Caring for a child with cancer
Family members and friends often play an important role in taking care of a child 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
A caregiving plan can help caregivers stay organized and help identify opportunities to delegate tasks to others. Ask how much care your child may need at home and with daily tasks during and after treatment. Use this 1-page fact sheet that includes an action plan to help make caregiving a team effort. This free fact sheet is available as a PDF, so it is easy to print.
Looking for More on How to Track Side Effects?
Cancer.Net offers several resources to help you keep track of symptoms and side effects. Please note that these links will take you to other sections of Cancer.Net:
Cancer.Net Mobile: The free Cancer.Net mobile app allows you to securely record the time and severity of your child's symptoms and side effects.
ASCO Answers Managing Pain: Get this 32-page booklet about the importance of pain relief that includes a pain tracking sheet to record how pain affects your child. The free booklet is available as a PDF, so it is easy to print.
ASCO Answers Fact Sheets: Read 1-page fact sheets on anxiety and depression, constipation, diarrhea, and rash that provide a tracking sheet to record details about the side effect. These free fact sheets are available as a PDF, so they are easy to print, fill out, and give to your health care team.
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.