Follow-up visits after brain tumour treatment

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Learn what happens at follow-up clinic visits after brain tumour treatment for your child has ended.

Key points

  • Each follow-up visit will include a physical exam, a neurological exam, and possibly an MRI scan or other relevant tests.
  • At the visit, your child’s health-care team will assess your child’s physical development and growth, as well as their behavioural and developmental progress.

The end of chemotherapy or radiation treatment is an important milestone for your child and your family. Take this opportunity to celebrate this accomplishment. It’s also an occasion where you can show your appreciation for your other child(ren) in supporting their sibling.

Now, your family will begin to return to the family routines. There will be a transition phase as this happens. It is common for parents to have mixed feelings during this time. The happiness and relief that treatment is done can be accompanied by anxiety or fear about what the future holds.

This is not surprising because the sense of safety and support of seeing the health-care team regularly for months will no longer be right there. During treatment, your child was checked regularly by the team, and you were surrounded by other parents and children during clinic visits, which may have provided support.

One way to maintain that sense of safety and support is to make sure your child attends all their follow-up appointments.

Attending follow-up clinic

After treatment ends, your child may need to keep in touch with several different health-care providers.

In the first year after treatment, your child will have checkups at a follow-up clinic every few months. After a year, depending on the type of tumour, visits to the clinic will take place every 4 to 6 months. Eventually, appointments will occur once every year.

Your child may need rehabilitation for physical problems. This may take place in a rehabilitation hospital or in the community with physical, occupational, and/or speech-language therapists.

Attending primary care provider appointments

In addition to clinic visits, it is important to get in touch with your child’s primary care provider (e.g., family doctor or paediatrician) for regular childhood physical examinations. It is important for children who have had cancer to be seen at least once per year by their primary care provider, who is responsible for routine immunizations, managing common childhood illnesses, and routine physical examinations. Keep them up to date on your child’s condition.

The primary care provider should also be informed when treatment ends and be updated regularly after each follow-up visit. After each follow-up visit, the treatment team will send a letter to your child’s primary care provider.

What happens at follow-up clinic visits?

At follow-up clinic visits, the team will check your child’s physical condition and check for potential late effects of treatment. If you notice symptoms at home, mention them to the treatment team, as they may be related to the tumour or its treatment. In addition to the treatment team, your child may need to see other specialists to manage these late effects . This may include an endocrinologist, ophthalmologist, a neuropsychologist, or others.

The team will also see how the tumour and treatment has impacted your child’s and family’s life. You should bring up any questions or concerns you might have about your child. Visits focus on three areas:

Issues specific to brain tumours

The treatment team will do a thorough check of your child’s condition. The visit will include:

  • Physical examination, including height and weight measurements
  • Neurological examination
  • Possibly an MRI scan (or review of a scan done before the follow-up visit)
  • Any other tests relevant to the tumour or treatment, such as blood work or hearing tests

Growth and physical development

The physical checkup generally includes height and weight measurements to monitor your child’s growth. For adolescents, the physical checkup will also include a puberty development assessment.

Psychosocial adjustment

The visit will also address issues such as family stress, school attendance and performance, sleeping and eating patterns, relationships, and behavioural issues.

Talk about any of your concerns at the clinic. However, if you have any concerns or your child is having symptoms between clinic visits, please give the team a call.

Anxieties about follow-up clinic visits

Many parents become anxious in the days before a clinic visit. For example, they may have difficulty sleeping or focusing, and may be afraid that the MRI scan done during the visit will indicate that the tumour has come back. These are normal worries.

This may be a time when you need to draw on other sources of support, such as parents who have gone through the experience before. Consider using the coping techniques you may have used to get you through your child’s diagnosis or other stages of your child’s treatment. Additionally, the follow-up clinic team includes a clinical psychologist who can provide additional support.

Transition to adult care

Once your child turns 18, their care will be transferred to an adult clinic where the follow-up visits will continue, following the same screening schedule as before. The adult clinic provides access to similar resources. If your child has been seeing other specialists, this care will also be transferred to adult specialists.

For more information on transitioning to adult care, please see the Transition to Adult Care Learning Hub.

Teens can find information on transitioning to adult care in the Transition to Adult Care Learning Hub for teens.

Last updated: January 10th 2022