After NeuroblastomaTreatment

As treatment comes to an end, you and your family can start to transition out of treatment mode and into more familiar routines while the healthcare team continues to monitor your child’s recovery. The end of your child’s neuroblastoma treatment is a joyous milestone and something to be celebrated. After months of therapy, you, your child, your family, and loved ones should recognize and celebrate this achievement.

The Importance of After Treatment Follow-up

Hear from a pediatric oncologist and nurse practitioner about why long-term follow-up is important for your child after they complete their treatment journey.

Learn about the transition from treatment

Find answers below to common questions that caregivers have at each stage of the transition.

Finishing treatment

It’s okay to have uncertainties—here are some things to keep in mind that may help you with the transition after treatment ends.

Feelings of uncertainty

It is okay to have mixed feelings about the end of treatment. Many parents and caregivers do. Even though you are thankful that your child has finished treatment, you may feel uncertain about the future or worried about your child's cancer returning.

Fear of the cancer returning (relapse) is a common feeling among cancer survivors and caregivers of children with neuroblastoma. It may help to remember that:

Your child has completed treatment because the oncologist believes it is safe to end therapy

Your child will have frequent follow-up visits to make sure they are neuroblastoma-free

The chances of neuroblastoma returning decrease the longer your child is off treatment

As treatment ends, follow-up care begins

Follow-up care is the care your child receives as their treatment ends, and it will take place over an extended period of time (months to years).

Your child's oncology team may provide a recommended schedule of follow-up visits. During these visits, your child will undergo labs, scans, and a physical exam, allowing the oncologist to monitor for neuroblastoma and keep a watchful eye on your child’s recovery. The adjustment period from treatment into follow-up care takes some time. These follow-up care visits can help you:

Know that your child's recovery is going according to plan
Start to identify any short- and long-term effects of treatment
Monitor for late effects (a health problem that appears months or years after cancer therapy has ended)
Discuss any questions or concerns you have

Review the labs, scans, and exams your child’s healthcare team will run to monitor your child’s recovery.

1 to 6 months after treatment

Transitioning your child's care, managing fever and illness, central line removal, and more

Location of follow-up visits

After treatment ends, it is most common for your child’s care to occur in the outpatient clinic and not the hospital.

Fevers and illness

Once treatment ends, you should have a plan in place with direction from your child's oncology team in case your child develops a fever or illness. This may require giving your child antibiotics at the hospital where they were treated.

Your child may not be allowed to see their pediatrician for fever or illness until their blood counts have returned to normal and their central line has been removed.

Central line removal

Removal of your child’s central line will usually happen within a month after treatment. This requires a minor surgical procedure and may be a little uncomfortable.

Hair regrowth

Hair loss is often a side effect of your child’s chemotherapy or radiation therapy. It may take several weeks after the completion of treatment for hair to recover and begin growing again. Hair regrowth is most common within 3 to 6 months after treatment.

Dietary adjustments

Your child may have preferred certain high-calorie and high-sodium foods during their treatment. While this is often encouraged on treatment, it is important to reintroduce a balanced and nutritious diet to help them heal and grow.

A healthy diet includes a proper balance of protein, carbohydrates, fats, vitamins, and minerals best obtained from fresh foods. Reach out to your child's registered dietitian to learn how you can help them return to making healthy choices.

Reach out to your child’s registered dietician to learn how to adjust their diet after neuroblastoma treatment

Activity restrictions

It is important to talk to your healthcare team about any limitations your child may have due to their specific treatment. In general, you should encourage your child to return to normal activities as soon as they feel strong enough.

6 to 12 months after treatment

Planning your child's return to school, including addressing learning challenges, and immunizations

Returning to school

Your child may have been unable to attend school consistently during treatment. Going back to school should be a priority because it provides a sense of normalcy and is an important part of their overall development. Speak to your healthcare team about your child’s readiness, as this often depends on their blood count and immunization record.

It is important to begin planning your child’s return to school as early as possible. This may involve conversations with your child’s healthcare team, school administration, school nurse, school psychologist, and teachers.

It is important to communicate:

Medications your child needs to take and how to give them

Special devices they may have

Problems to watch for and report to you

Limitations to your child’s activity

Special accommodations for physical needs (including extra breaks or snacks)

Who to call with questions and emergencies

Addressing learning challenges

Because treatment for neuroblastoma will sometimes include therapy targeting the central nervous system, your child may have trouble concentrating in school. While learning challenges are not always apparent right away, they can arise years after treatment. Learning challenges should be discussed with your child’s healthcare team, the school psychologist, and the school team. A 504 plan or Individualized Educational Plan (IEP) may be utilized to ensure that your child’s specific needs are addressed over time, and that a learning environment that fosters academic success is available.

Some children feel excited about returning to school, while others may feel nervous. These are both understandable reactions. The transition back to school can be challenging for you, as well. Remaining in close contact with your child’s oncology and school teams helps ensure that you and your child will have adequate support throughout this transition.

Immunizations

In most cases, there is no need to repeat immunizations. However, your child's healthcare team will test to see if boosters are needed.

Your child might need to receive immunizations for the first time if their schedule was interrupted by treatment. Typically, children can start to catch up on these immunizations 6 to 12 months after treatment. It is always best to confirm the exact timing with your child's oncology team before speaking to your pediatrician.

Beyond 1 year after treatment

Keeping your child informed and transitioning to long-term follow-up care

Talking to your child about neuroblastoma

When neuroblastoma was diagnosed, it is likely that your child was very young, and they might not remember much about the early stages of treatment. Gradually sharing the details of what your child went through and teaching them about their illness will empower them to become their own advocate. This will also prepare them to take responsibility for medication administration, potential long-term side effect management, and, ultimately, a transition to adult care.

Starting conversations with your child about their neuroblastoma will encourage them to ask questions and understand the importance of staying informed about their health and past illness. It can also help them realize why follow-up care and clinic visits are so important as they grow.

Anniversaries

Diagnosis or end-of-treatment anniversaries can bring up mixed feelings for parents and caregivers. Speaking to other parents and caregivers who are going through similar life experiences may be helpful. Find a neuroblastoma support group in your area.

Transitioning to long-term follow-up care

The transition from a pediatric oncology team to a long-term follow-up clinic varies depending on where your child received treatment, and their personal recovery journey. This change can happen anywhere from 2 to 5 years after treatment.

In some cases, the hospital where your child was treated will care for them indefinitely. In other instances, they may transition to a clinic for adult survivors of childhood cancer.

Your child’s primary care provider (eg, pediatrician) will also be an important part of this team as your contact for issues unrelated to cancer. Your oncology providers/long-term follow-up providers will notify them of your child’s progress along the way.

Long-term follow-up care

Outlining the long-term care your child can expect, 2-5 years after treatment is complete

As follow-up care visits start to occur less often, and the focus of appointments becomes more about wellness and less about oncology, your child may transition to what is known as long-term follow-up care. This transition will typically occur 2 to 5 years after treatment is completed. As a survivor of neuroblastoma, your child will be given lifelong care by specialized healthcare providers. Their care may be provided in the setting of:

The hospital where they were treated
A specialized pediatric cancer long-term follow-up program
A specialized long-term follow-up program housed in an adult hospital facility
A local primary care provider who works in partnership with your child’s oncology team

Ask your child’s healthcare team for their recommendations on long-term follow-up care settings near you.

Multi-disciplinary follow-up

Cancer treatment can have an effect on the entire body. Your child may be dealing with long-term effects from treatment and they will be monitored for potential late effects following guidelines from the Children’s Oncology Group. Specialties may include but are not limited to:

Audiology (hearing)
Cardiology (heart)
Endocrinology (hormones)
Fertility

Nutrition
Psychology
Pulmonology (lungs)

Requesting your child’s treatment summary

A treatment summary is a document that outlines the therapy given to your child throughout treatment. It serves as a record of exposure, and will be used to evaluate the risk of late effects and help long-term follow-up providers tailor care for your child. Your long-term follow-up team will review this document with you thoroughly to ensure you understand its contents.

Treatment summaries often include the following information:

Type of neuroblastoma (stage and risk group)
Type of therapy received
Location of radiation received, if relevant
Doses of all medications and total amounts of radiation
Dates of treatment
Results of all scans and tests
Recorded side effects or complications during treatment

Recorded side effects or complications after treatment (during follow-up care)
Clinical trial number and title (if your child participated in a clinical trial)
Contact information for the hospital or clinic where your child was treated
Contact information for the pediatric oncologist
Surveillance (tests and scans) plan recommendations in place
Follow-up plan recommendations in place

Your child’s treatment summary should also be shared with healthcare providers outside of the long-term follow-up team, including a primary care physician or pediatrician, as well as emergency medical teams, if your child should require emergency assistance.

Becoming their own advocate

As the years go by and your child grows older, it will be important for them to be aware of their unique medical needs. Teaching them over time about neuroblastoma and their specific journey will increase their awareness and readiness to take ownership of their health. Having an updated treatment summary and care plan that they can share is key in helping them make sure they get the care they need.

If you found these answers helpful, visit the Children’s Oncology Group for more information about what happens after treatment.

Find more helpful questions to ask your doctor

What late effects of treatment are possible?

Find questions to ask your child’s doctor about care after treatment ends.

Use this informative family resource to help guide you and your child through the after-treatment phase of their recovery.

What Happens Next and When