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PubMed This is a summary of 18 peer-reviewed journal articles Updated
Oncology

The Journey of Survivorship: Monitoring and Late Effects

At a Glance

Medulloblastoma survivorship requires lifelong monitoring for the late effects of intensive treatments, such as neurocognitive delays and hormone deficiencies. Regular surveillance MRIs and a multidisciplinary care team are essential to support the long-term health and development of survivors.

Reaching the end of active treatment is a moment of immense relief, but it also marks the beginning of a lifelong journey called survivorship. Because the treatments for medulloblastoma are intensive, they often leave a lasting impact on the body and mind—a concept known as late effects [1][2].

The Impact of Radiation on the Developing Brain

For children who received Craniospinal Irradiation (CSI), the most common late effects are related to how the brain processes information [3].

  • Neurocognitive Delays: Survivors may experience a slowing in processing speed (the time it takes to handle information) and challenges with memory or focus [4]. These issues can become more apparent as schoolwork gets harder [5].
  • A “Lag” in Development: It is important to understand that while children continue to learn, they may not gain new skills at the same rate as their peers [4]. Regular neuropsychological evaluations are essential to create a “map” of your child’s strengths and challenges for their teachers [3][6].

Monitoring the Endocrine System

Radiation to the brain and spine often affects the pituitary gland (the master hormone controller) and the thyroid [7].

  • Growth Hormone Deficiency (GHD): This is one of the most frequent late effects. Your child’s growth should be monitored closely by a pediatric endocrinologist [8].
  • Hypothyroidism: An underactive thyroid can lead to fatigue, weight gain, and learning difficulties [7].
  • Puberty: Some survivors may enter puberty earlier than expected (precocious puberty) or face challenges with fertility later in life [7][9].

Surveillance and “Scanxiety”

Monitoring for recurrence is a lifelong commitment. In the first 2 to 3 years post-treatment, surveillance MRIs of the brain and spine are typically performed every 3 to 4 months. As time passes, these intervals gradually lengthen to every 6 months and eventually once a year [10][11].

The intense fear and anxiety that occurs around these check-ups is a real and recognized phenomenon called scanxiety [12].

  • The Waiting Period: Anxiety often peaks during the time between the scan and the results [13].
  • Coping Strategies: Families can cope by asking for a specific time when results will be ready, practicing mindfulness, and ensuring they have psychosocial support from their care team [14][15].

Lifelong Management

Because late effects can involve many systems—including the brain, hormones, heart, and hearing—the gold standard of care is a multidisciplinary survivorship clinic [2]. These clinics coordinate care between various specialists to ensure that your child is monitored for rare but serious long-term risks, such as secondary malignancies (new cancers that can develop in the radiation field) [16][17].

Survivorship is not about looking for a return of cancer, but about ensuring your child has the tools and support they need to thrive in the years ahead [2][18].

Common questions in this guide

How often will my child need a surveillance MRI after medulloblastoma treatment?
In the first 2 to 3 years after treatment, surveillance MRIs of the brain and spine are typically done every 3 to 4 months. Over time, these intervals gradually lengthen out to every 6 months and eventually once a year.
What are the neurocognitive late effects of radiation for medulloblastoma?
Children who receive craniospinal irradiation may experience slower processing speeds and challenges with memory or focus. They continue to learn, but they might not acquire new skills at the exact same rate as their peers.
Why does a medulloblastoma survivor need to see an endocrinologist?
Radiation to the brain and spine often affects the pituitary and thyroid glands. An endocrinologist monitors for common late effects like growth hormone deficiency, underactive thyroid, and early puberty.
What is scanxiety and how can our family manage it?
Scanxiety is the real and intense fear that occurs around follow-up imaging checks. Families can manage it by practicing mindfulness, securing psychosocial support, and asking the care team exactly when the scan results will be available.
Do childhood brain tumor survivors need a special education plan for school?
Yes, survivors often benefit from an Individualized Education Program (IEP). Regular neuropsychological evaluations help map out a child's cognitive needs and processing speed so teachers can provide the right classroom support.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How often should my child have a formal neuropsychological evaluation to monitor their processing speed and learning?
  2. 2.What is our specific surveillance MRI schedule for the next five years?
  3. 3.Does this center have a specialized 'Survivorship Clinic' that brings together endocrinologists and oncologists?
  4. 4.When will my child have their next baseline thyroid and growth hormone blood tests?
  5. 5.Who is our primary contact if we notice new symptoms between scheduled surveillance scans?

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 (18)
  1. 1

    Multiple pilomatrixomas in a survivor of WNT-activated medulloblastoma leading to the discovery of a germline APC mutation and the diagnosis of familial adenomatous polyposis.

    Bendelsmith CR, Skrypek MM, Patel SR, et al.

    Pediatric blood & cancer 2018; (65(1)) doi:10.1002/pbc.26756.

    PMID: 28792655
  2. 2

    "I Wish There had been Resources": A Photo-Elicitation Study of Rectal Cancer Survivorship Care Needs.

    Rivard SJ, Vitous CA, Bamdad MC, et al.

    Annals of surgical oncology 2023; (30(6)):3530-3537 doi:10.1245/s10434-022-13042-6.

    PMID: 36847958
  3. 3

    Risk factors for domain-specific neurocognitive outcome in pediatric survivors of a brain tumor in the posterior fossa-Results of the HIT 2000 trial.

    Mynarek M, Rossius A, Guiard A, et al.

    Neuro-oncology 2024; (26(11)):2113-2124 doi:10.1093/neuonc/noae092.

    PMID: 38835160
  4. 4

    Neurocognitive outcomes and functional independence in adult survivors of childhood medulloblastoma diagnosed over 3 decades.

    Papini C, Mirzaei S, Xing M, et al.

    Neuro-oncology 2025; (27(1)):254-266 doi:10.1093/neuonc/noae119.

    PMID: 38963825
  5. 5

    Proton Therapy Mediates Dose Reductions to Brain Structures Associated With Cognition in Children With Medulloblastoma.

    Sienna J, Kahalley LS, Mabbott D, et al.

    International journal of radiation oncology, biology, physics 2024; (119(1)):200-207 doi:10.1016/j.ijrobp.2023.11.035.

    PMID: 38040059
  6. 6

    Long-Term Outcomes Associated With Posterior Fossa Syndrome in Survivors of Childhood Medulloblastoma.

    Sarvode S, Dhaduk R, Chen Y, et al.

    JAMA network open 2026; (9(2)):e2559376 doi:10.1001/jamanetworkopen.2025.59376.

    PMID: 41712211
  7. 7

    Endocrinopathy After Treatment for Medulloblastoma: Results From the SJMB03 Trial of Risk-Adapted Radiation Therapy.

    Merchant TE, Wu S, Onar-Thomas A, et al.

    International journal of radiation oncology, biology, physics 2023; (116(3)):560-568 doi:10.1016/j.ijrobp.2022.12.016.

    PMID: 36563909
  8. 8

    Children's outcomes in medulloblastoma proton versus photon craniospinal radiotherapy (CURE): meta-analysis.

    Viani GA, Hamamura AC, Arruda CV, et al.

    Radiotherapy and oncology : journal of the European Society for Therapeutic Radiology and Oncology 2026; 111367 doi:10.1016/j.radonc.2026.111367.

    PMID: 41529731
  9. 9

    Proton beam therapy for children and adolescents and young adults (AYAs): JASTRO and JSPHO Guidelines.

    Mizumoto M, Fuji H, Miyachi M, et al.

    Cancer treatment reviews 2021; (98()):102209 doi:10.1016/j.ctrv.2021.102209.

    PMID: 33984606
  10. 10

    Dual primary cancers of skin cancer and lung cancer: a case report.

    He B, Zhang H, Guo Y, Song Y

    Journal of cardiothoracic surgery 2026; (21(1)):71 doi:10.1186/s13019-025-03793-0.

    PMID: 41491492
  11. 11

    Susceptibility-weighted magnetic resonance imaging of cerebrovascular sequelae after radiotherapy for pediatric brain tumors.

    Neu MA, Tanyildizi Y, Wingerter A, et al.

    Radiotherapy and oncology : journal of the European Society for Therapeutic Radiology and Oncology 2018; (127(2)):280-286 doi:10.1016/j.radonc.2018.03.010.

    PMID: 29605477
  12. 12

    Scanxiety and Fear of Recurrence in Young Adult Female Breast and Gynaecological Cancer Survivors: Investigating Shared Mechanisms.

    Patel DS, Webster SN, Dowling EJ, et al.

    Psycho-oncology 2024; (33(12)):e70050 doi:10.1002/pon.70050.

    PMID: 39694862
  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

    Scanxiety and quality of life around follow-up imaging in patients with unruptured intracranial aneurysms: a prospective cohort study.

    Kamphuis MJ, van der Kamp LT, van Eijk RPA, et al.

    European radiology 2024; (34(9)):6018-6025 doi:10.1007/s00330-024-10602-0.

    PMID: 38311702
  15. 15

    "You Always Worry": Scan-Related Anxiety Among Patients With Metastatic Lung Cancer.

    Derry-Vick H, Prigerson HG, Hahne J, et al.

    Journal of the American College of Radiology : JACR 2025; (22(12)):1572-1577 doi:10.1016/j.jacr.2025.08.021.

    PMID: 41338711
  16. 16

    Meta-analysis of the incidence and patterns of second neoplasms after photon craniospinal irradiation in children with medulloblastoma.

    Bavle A, Tewari S, Sisson A, et al.

    Pediatric blood & cancer 2018; (65(8)):e27095 doi:10.1002/pbc.27095.

    PMID: 29693784
  17. 17

    Late-onset vascular and tumor complications after childhood brain radiotherapy: A rare case of dual sequelae.

    Ly QH, Garrel S, Kanamalla K, et al.

    Radiology case reports 2026; (21(5)):1821-1826 doi:10.1016/j.radcr.2026.01.063.

    PMID: 41732525
  18. 18

    Late effects of medulloblastoma treatment: multidisciplinary approach of survivors.

    Aktekin EH, Kütük MÖ, Sangün Ö, et al.

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2024; (40(2)):417-425 doi:10.1007/s00381-023-06146-1.

    PMID: 37698649

This page is for informational purposes only and does not replace professional medical advice. Always consult your pediatric oncologist or survivorship team regarding your child's specific monitoring schedule and late effects.

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