ON THIS PAGE: You will read about how to cope with challenges in everyday life after your child’s diagnosis. Use the menu to see other pages.
What is survivorship?
The word “survivorship” means different things to different people, but it often describes living with, through, and beyond being diagnosed with a tumor. In some ways, survivorship is one of the most complicated parts of the experience because it is different for every child and their family.
After active treatment ends, children and their families may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after the diagnosis. Other families stay very anxious about their child’s health and become uncertain about coping with everyday life.
One source of stress may occur when frequent visits to the health care team end after completing treatment. Often, relationships built with the health care team provide a sense of security during treatment, and children and their families miss this source of support. This may be especially true when new worries and challenges surface over time, such as any late effects of treatment, learning or school problems, emotional challenges, sexual development and fertility concerns, and/or financial issues.
Every family faces different concerns and challenges. With any challenge, a good first step is being able to recognize each fear and talk about it. Effective coping requires:
Understanding the challenge your family is facing
Thinking through solutions
Asking for and allowing the support of others
Feeling comfortable with the course of action your family chooses
It may be helpful to join an in-person support group or online community of childhood brain tumor survivors. Support groups also exist for parents of children diagnosed with this type of tumor. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of the health care team, individual counseling, or asking for assistance at the learning resource center of the place where your child received treatment.
Healthy living after craniopharyngioma
Survivorship often serves as a strong motivator to make lifestyle changes, often for the whole family.
Children who have had a tumor can enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, limiting alcohol, maintaining a healthy weight, eating well, managing stress, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child. Learn more about making healthy lifestyle choices.
It is important that your child has recommended medical checkups and tests (see Follow-Up Care) to take care of their health. Ask the doctor about receiving a survivorship care plan that is best for your child’s needs.
Changing role of caregivers
Parents, other family members, and friends may also go through periods of transition. A caregiver plays a very important role in supporting a child diagnosed with craniopharyngioma, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.
However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to a child’s diagnosis will become much less or come to an end as your child gets older. Family counselors at pediatric treatment centers can help with this transition. You can also learn more about adjusting to life after caregiving.
Looking for More Survivorship Resources?
For more information about survivorship, explore these related items. Please note that these links will take you to other sections of Cancer.Net:
Survivorship Resources: Cancer.Net offers information and resources to help survivors cope, including specific sections for children and teens and young adults. There is also a main section on survivorship for people of all ages.
ASCO Answers Guide to Cancer Survivorship: Get this 48-page booklet that can help with the transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The free booklet is available as a PDF, so it is easy to print.
The next section offers Questions to Ask the Health Care Team to help start conversations with your child’s medical care team. Use the menu to choose a different section to read in this guide.