What Happens Next and WhenWhat Happens Next and When
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 on 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 this transition.
Select a time period to learn more:
Finishing treatment
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 beginsAs 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
1 to 6 months after treatment
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.
1 to 6 months after treatmentCentral 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.
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
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:
Returning to schoolAddressing 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.
Addressing learning challengesSome 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
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.
Talking to your child about neuroblastomaStarting 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.
AnniversariesAnniversaries
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.
Transitioning to long-term follow-up careLong-term follow-up care
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
Long-term follow-up careAsk your child’s healthcare team for their recommendations on long-term follow-up care settings near you.
Multi-disciplinary follow-upMulti-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
- 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.
Long-term side effect or late effect
A long-term side effect is a condition that may have occurred as a result of cancer treatment and that can persist for months or years after the end of treatment. A late effect is a side effect that may appear years after the completion of therapy. Both range from mild to severe and are managed by the long-term follow-up care team.
Potential late effects of neuroblastoma treatment
Long-term follow-up care providers monitor for and assist in managing side effects that may not occur until years after treatment has ended. Late effects of treatment will vary based on where your child’s neuroblastoma was located, the type and dose of treatment they received, and their age at time of treatment.
Late effects of treatment may occur in some children and not others. These late effects can be physical, emotional, or cognitive.
Physical late effects
Your child may experience changes to organs, tissues, and body functions. Your child’s growth and development may be affected by these changes. Potential effects may include impairment or dysfunction to the following:
Treatment may also sometimes cause another (secondary) cancer.
Cognitive late effects
Your child may experience changes in their ability to learn (ie, memory and critical thinking skills) which may impact how they perform in school. These effects are more common in children who had radiation therapy to their spinal cord, brain, and/or head and neck.
Emotional late effects
Your child may experience changes in their mood, feelings, and behavior, which may impact their social well-being. In some cases, children may suffer from depression or post-traumatic stress disorder. If you notice changes in your child’s moods and behaviors, speak with your healthcare team or a mental health specialist.
emotional late effectsFollow-up care with specialists should be a part of your child’s plan to help address any late effects.
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.
