Craniopharyngioma - Childhood: Coping with Treatment

Approved by the Cancer.Net Editorial Board, 01/2019

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of craniopharyngioma and its treatment. Use the menu to see other pages.

Every treatment for craniopharyngioma can cause side effects or changes to your child’s body and how he or she feels. For many reasons, children do not experience the same side effects even when given the same treatment. This can make it hard to predict how your child will feel during treatment.

As your child prepares to start 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 treatment “palliative care” or "supportive care." It is an important part of your child’s treatment plan, regardless of his or her age or tumor size.

Coping with physical side effects

Common physical side effects from each treatment option for craniopharyngioma are described within the Types of Treatment section. Learn more about side effects of craniopharyngioma and its treatment, along with ways to prevent or control them. Changes to your child’s physical health depend on several factors, including 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, 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 survivorship care. 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 child can have emotional and social effects as well as physical effects after a diagnosis of craniopharyngioma. This may include dealing with difficult emotions, such as anxiety 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 a diagnosis.

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 needs.

Coping with financial effects

Treatment for craniopharyngioma can be expensive. It is often a big source of stress and anxiety for families. 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 craniopharyngioma

Family members and friends often play an important role in taking care of a child with craniopharyngioma. This is called being a caregiver. As a parent or guardian, you are the primary caregiver for your child. However, friends and family can give you valuable support, even if they live far away.

When your child has craniopharyngioma, 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.

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. Create a caregiving plan with 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 out.

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 symptoms and side effects.
  • ASCO Answers Managing Pain: Get this 36-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 out.

  • ASCO Answers Fact Sheets: Read 1-page fact sheets on diarrhea and rash that provide a tracking sheet to record the timing and severity of the side effect. These free fact sheets are available as a PDF, so it is easy to print out.

The next section in this guide is Follow-up Care. It explains the importance of checkups after treatment is finished. Use the menu to choose a different section to read in this guide.