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PubMed This is a summary of 16 peer-reviewed journal articles Updated
Oncology

Life After Treatment: Survivorship and Late Effects

At a Glance

After neuroblastoma treatment, children require lifelong follow-up care to monitor for late effects like hearing loss, growth issues, and organ damage. A personalized Survivorship Care Plan is essential to guide their ongoing medical care and manage potential long-term complications.

Finishing treatment for high-risk neuroblastoma is a milestone worth celebrating, but it also marks the beginning of a new phase: survivorship. Because the treatment marathon was so intensive, it can leave lasting footprints on your child’s health [1]. Long-term surveillance is not just about looking for the cancer’s return—it is about proactively managing your child’s health for decades to come [2][3].

Understanding “Late Effects”

Late effects are health issues that appear months or even years after treatment ends [2]. Knowing what to watch for helps you and your care team act early.

  • Hearing Loss (Ototoxicity): Cisplatin and carboplatin, key drugs in the induction phase, can damage the tiny hair cells in the ear [2][4]. This often affects high-pitched sounds first and may require hearing aids or specialized classroom support [5].
  • Endocrine and Growth Issues: Treatment can affect the glands that produce hormones. This might lead to slow growth, thyroid issues, or delays in reaching puberty [6][7]. Many survivors see a pediatric endocrinologist regularly to monitor these levels [4].
  • Heart and Kidney Health: Certain chemotherapy drugs (anthracyclines) and radiation can affect heart function or kidney health over time [8][9]. Regular echocardiograms and blood tests are used to monitor these organs [4].
  • Secondary Malignancies: While rare, the very treatments used to cure neuroblastoma can slightly increase the risk of developing a different type of cancer later in life [10][3]. This makes lifelong medical follow-up essential.

Navigating “Scanxiety”

For many parents, the period around follow-up scans is the most stressful part of survivorship. This is often called scanxiety—the multifaceted distress experienced before a scan and during the wait for results [11][12].

It is common to feel like you are living under a “Sword of Damocles,” waiting for news [13][14]. Furthermore, because many children require sedation or anesthesia for scans to remain still, the physical logistics of the scan day itself can be highly triggering for families.

Families often find relief by:

  • Scheduling scans and result appointments as close together as possible [13].
  • Using “distraction therapy” (like a special family outing) during the waiting period [14].
  • Utilizing hospital support services, such as child life specialists or medical hypnosis, to reduce a child’s procedural anxiety [15][16].

The Lifelong Road Map

Your oncology team will provide a Survivorship Care Plan. This document is a vital roadmap that summarizes every treatment your child received and lists the specific tests they will need in the future [2].

As your child transitions into adolescence and adulthood, this plan will help their future doctors understand their unique medical history [2][4]. While the intensity of hospital visits will eventually fade, staying connected to a survivorship clinic ensures that any late effects are caught early and managed effectively, allowing your child to thrive long after the marathon is over [10][3].

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Common questions in this guide

What are the potential late effects of neuroblastoma treatment?
Late effects can include hearing loss from specific chemotherapy drugs, growth and hormone issues, heart or kidney problems, and a small risk of developing secondary cancers later in life.
Why does my child need a hearing test after finishing chemotherapy?
Chemotherapy drugs like cisplatin and carboplatin can damage the tiny hair cells in the ear, often causing high-pitched hearing loss. Regular hearing tests help catch this damage early so your child can get necessary support, like hearing aids.
What is a Survivorship Care Plan?
A Survivorship Care Plan is a personalized document that summarizes all the treatments your child received. It serves as a lifelong medical roadmap, listing the specific follow-up tests and specialist visits they will need as they grow up.
How can we cope with scanxiety before follow-up scans?
Many families manage scanxiety by scheduling their child's scans and result appointments as close together as possible. Planning fun family outings as distractions and working with hospital child life specialists can also help reduce stress.
Will my child need to see other specialists after neuroblastoma treatment?
Yes, many childhood cancer survivors need to see specific specialists as they grow. For example, a pediatric endocrinologist can monitor thyroid levels and growth, while a cardiologist may check for long-term heart effects from chemotherapy.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Can we create a 'Survivorship Care Plan' that lists all the chemotherapy doses and radiation my child received?
  2. 2.How often should my child have hearing tests (audiograms) to monitor for cisplatin-related hearing loss?
  3. 3.Which endocrine specialists (like growth or thyroid experts) should my child see, and when?
  4. 4.What is the schedule for follow-up scans (like MIBG or CT/MRI) over the next few years?
  5. 5.Are there specific signs or symptoms of a secondary malignancy that I should be aware of as my child grows?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (16)
  1. 1

    Late effects after high-risk neuroblastoma (LEAHRN): a multicentre, cross-sectional cohort study from the Children's Oncology Group.

    Henderson TO, Bardwell JK, Kao PC, et al.

    The Lancet. Child & adolescent health 2025; (9(11)):776-786 doi:10.1016/S2352-4642(25)00241-X.

    PMID: 41016399
  2. 2

    Neurologic disorders in long-term survivors of neuroblastoma - a population-based cohort study within the Adult Life after Childhood Cancer in Scandinavia (ALiCCS) research program.

    Norsker FN, Rechnitzer C, Andersen EW, et al.

    Acta oncologica (Stockholm, Sweden) 2020; (59(2)):134-140 doi:10.1080/0284186X.2019.1672892.

    PMID: 31591921
  3. 3

    Long-Term Risk of Subsequent Neoplasms in 5-Year Survivors of Childhood Neuroblastoma: A Dutch Childhood Cancer Survivor Study-LATER 3 Study.

    Westerveld ASR, Tytgat GAM, van Santen HM, et al.

    Journal of clinical oncology : official journal of the American Society of Clinical Oncology 2025; (43(2)):154-166 doi:10.1200/JCO.23.01430.

    PMID: 39356982
  4. 4

    Late Effects and Survivorship Issues in Patients with Neuroblastoma.

    Friedman DN, Henderson TO

    Children (Basel, Switzerland) 2018; (5(8)) doi:10.3390/children5080107.

    PMID: 30082653
  5. 5

    Late Effects in Pediatric High-risk Neuroblastoma Survivors After Intensive Induction Chemotherapy Followed by Myeloablative Consolidation Chemotherapy and Triple Autologous Stem Cell Transplants.

    Armstrong AE, Danner-Koptik K, Golden S, et al.

    Journal of pediatric hematology/oncology 2018; (40(1)):31-35 doi:10.1097/MPH.0000000000000848.

    PMID: 28538090
  6. 6

    Musculoskeletal outcomes and the effect of radiation to the vertebral bodies on growth trajectories for long-term survivors of high-risk neuroblastoma.

    Ferris MJ, Tian S, Switchenko JM, et al.

    Journal of radiation oncology 2018; (7(2)):187-193 doi:10.1007/s13566-018-0349-4.

    PMID: 34178250
  7. 7

    Late toxicity after upper abdominal radiotherapy in pediatric Wilms tumor and neuroblastoma survivors. A systematic review on behalf of SIOPEN and SIOP-RTSG.

    Wens FSPL, Zonca F, van Tinteren H, et al.

    Radiotherapy and oncology : journal of the European Society for Therapeutic Radiology and Oncology 2025; (209()):110961 doi:10.1016/j.radonc.2025.110961.

    PMID: 40441488
  8. 8

    Cardiovascular Health Status And Genetic Risk In Survivors of Childhood Neuroblastoma and Nephroblastoma Treated With Doxorubicin: Protocol of the Pharmacogenetic Part of the LESS-Anthra Cross-Sectional Cohort Study.

    Zolk O, von dem Knesebeck A, Graf N, et al.

    JMIR research protocols 2022; (11(2)):e27898 doi:10.2196/27898.

    PMID: 35175211
  9. 9

    Radiotherapy-related arterial intima thickening and plaque formation in childhood cancer survivors detected with very-high resolution ultrasound during young adulthood.

    Vatanen A, Sarkola T, Ojala TH, et al.

    Pediatric blood & cancer 2015; (62(11)):2000-6 doi:10.1002/pbc.25616.

    PMID: 26052933
  10. 10

    Neuroblastoma survivors at risk for developing subsequent neoplasms: A systematic review.

    Westerveld ASR, van Dalen EC, Asogwa OA, et al.

    Cancer treatment reviews 2022; (104()):102355 doi:10.1016/j.ctrv.2022.102355.

    PMID: 35158111
  11. 11

    The patient perspective in the era of personalized medicine: What about scanxiety?

    Custers JAE, Davis L, Messiou C, et al.

    Cancer medicine 2021; (10(9)):2943-2945 doi:10.1002/cam4.3889.

    PMID: 33837668
  12. 12

    Prevalence and severity of scanxiety in people with advanced cancers: a multicentre survey.

    Bui KT, Kiely BE, Dhillon HM, et al.

    Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 2022; (30(1)):511-519 doi:10.1007/s00520-021-06454-9.

    PMID: 34333717
  13. 13

    Scanxiety among Adults with Cancer: A Scoping Review to Guide Research and Interventions.

    Derry-Vick HM, Heathcote LC, Glesby N, et al.

    Cancers 2023; (15(5)) doi:10.3390/cancers15051381.

    PMID: 36900174
  14. 14

    Prevalence, severity, and modifiable predictors of scanxiety in patients undergoing routine oncologic imaging: a prospective longitudinal study.

    Shah MS, Memon JA, Malik U, et al.

    Clinical imaging 2025; (128()):110634 doi:10.1016/j.clinimag.2025.110634.

    PMID: 41077027
  15. 15

    The Role of Medical Hypnosis in Alleviating Procedural Anxiety in Pediatric Interventional Radiology: A Pilot Study.

    Condé N, Fortin V, Cabrera T

    The International journal of clinical and experimental hypnosis 2025; 1-6 doi:10.1080/00207144.2025.2528240.

    PMID: 40690702
  16. 16

    The Acceptability and Impact of the Xploro Digital Therapeutic Platform to Inform and Prepare Children for Planned Procedures in a Hospital: Before and After Evaluation Study.

    Bray L, Sharpe A, Gichuru P, et al.

    Journal of medical Internet research 2020; (22(8)):e17367 doi:10.2196/17367.

    PMID: 32780025

This page provides educational information about neuroblastoma survivorship and late effects. Always consult your child's pediatric oncology team for personalized medical advice and follow-up care.

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