Explore external links to resources below.
Chapter 1: Survivorship
References
- Chow EJ, Ness KK, Armstrong GT, et al. (2020). Current and coming challenges in the management of the survivorship population. Semin Oncol. 2020 Feb;47(1):23-39. doi: 10.1053/j.seminoncol.2020.02.007. Epub 2020 Mar 4. PMID: 32197774; PMCID: PMC7227387.
- Corrigan JJ, et al. (2004). American Academy of Pediatrics’ guidelines for pediatric cancer centers. Pediatrics, 113(6): 1833–35.
- Hord J, Feig S, Crouch G, et al. Standards for Pediatric Cancer Centers. Section on hematology/oncology; Pediatrics (2014) 134 (2): 410–414. https://doi.org/10.1542/ peds.2014-1526
- Klausner R (Apr 1998). NCI Spotlights Survivorship. The Bone & Marrow Transplant Newsletter, 9(1), issue 41.
- Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers, Version 6.0 (October 2023)
- Masera G, Chesler M, Jankovic M, et al. (1996) SIOP Working Committee on Psychosocial issues in pediatric oncology: guidelines for care of long-term survivors. Med Pediatr Oncol. 1996 Jul;27(1):1-2. doi: 10.100
- Mullan F (1985). Seasons of survival: Refl ections of a physician with cancer. N Engl J Med, 313: 270–273
- Phillips SM, Padgett LS, Leisenring WM, et al. (2015) Survivors of childhood cancer in the United States: prevalence and burden of morbidity. Cancer Epidemiol Biomarkers Prev. 2015 Apr;24(4):653-63. doi: 10.1158/1055-9965.EPI-14-1418. PMID: 25834148; PMCID: PMC4418452
- Song A, Fish JD. Caring for survivors of childhood cancer: it takes a village. (2018) Curr Opin Pediatr. 2018 Dec;30(6):864-873. doi: 10.1097/MOP.0000000000000681. PMID: 30124580
Resources
- Find a survivorship clinic near you: Oncolink
- Alex’s Lemonade Stand Foundation
- American Academy of Pediatrics (AAP)
- American Cancer Society (ACS)
- Centers for Disease Control and Prevention (CDC) U.S.
- Children’s Oncology Group. (V6, 2023) -Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
- Passport for Care - Survivor Care Plans by Children’s Oncology Group
- Summary of Cancer Treatment form - Children’s Oncology Group
Click on: Summary of Cancer Treatment (Comprehensive or Summary)
Chapter 2: Emotions
References
- Cook JL, Russell K, Long A, Phipps S. (2021) Centrality of the childhood cancer experience and its relation to post-traumatic stress and growth. Psycho-oncology. 2021 Apr;30(4):564-570. doi: 10.1002/pon.5603. Epub 2020 Dec 15. PMID: 33232545; PMCID: PMC9125987.
- De R, Zabih V, Kurdyak P, et al. (2020) Psychiatric Disorders in Adolescent and Young Adult-Onset Cancer Survivors: A Systematic Review and Meta-Analysis. J Adolesc Young Adult Oncol. 2020;9(1):12–22. D
- Ji X, Cummings JR, Mertens AC, et al. (2021) Substance use, substance use disorders, and treatment in adolescent and young adult cancer survivors-Results from a national survey. Cancer. 2021 Sep 1;127(17):3223-3231. doi: 10.1002/cncr.33634. Epub 2021 May 11. PMID: 33974717.
- Tremolada M, Bonichini S, Basso G et al. (2016) Post-traumatic stress symptoms and post-traumatic growth in 223 childhood cancer survivors: Predictive risk factors. Frontiers in psychology 7. Feb 2016, DOI:10.3389/fpsyg.2016.00287
Resources
- Children’s Oncology Group (V6, Oct 2023). Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers. Mental Health.
- American Childhood Cancer Organization (ACCO)
- Cancer Care
- Chai Lifeline
- Camp Simcha
- Family Voices
- Momcology®
- Passport for Care - , Survivor Care Plans by Children’s Oncology Group (V6, Nov 2023)
- Ulman Cancer Foundation
Chapter 3: Relationships
References
- Aloaoui-Lasmaili KE, Nguyen-Thi PL, Demogeot N, et al. Fertility discussions and concerns in childhood cancer survivors, a systematic review for updated practice. Cancer Med. 2022 Oct 12(5):6023-6039.
- Bjornard KL, Howell CR, Klosky JL, et al. (2020) Psychosexual Functioning of Female Childhood Cancer Survivors: A Report from the St. Jude Lifetime Cohort Study. J Sex Med. 2020 Oct;17(10):1981-1994. doi: 10.1016/j.jsxm.2020.06.005. Epub 2020 Jul 25. PMID: 32723681; PMCID: PMC7552816
- Cherven B, Sampson A, Bober SL, et al. (2021). Sexual health among adolescent and young adult cancer survivors: A scoping review from the children’s oncology group adolescent and young adult oncology discipline committee. CA: A Cancer Journal for Clinicians, 71(3), 250-263. https://doi.org/10.3322/caac.21655
- Kazak AE, Derosa BW, Schwartz LA, et al. (2010) Psychological outcomes and health beliefs in adolescent and young adult survivors of childhood cancer and controls. J Clin Oncol. 2010 Apr 20;28(12):2002-7. doi: 10.1200/JCO.2009.25.9564. Epub 2010 Mar 15. PMID: 20231679; PMCID: PMC2860405
- Lehmann V, Gerhardt CA, Baust K, et al. (2022) Psychosexual Development and Sexual Functioning in Young Adult Survivors of Childhood Cancer. J Sex Med. 2022 Nov;19(11):1644-1654. doi: 10.1016/j.jsxm.2022.07.014. Epub 2022 Sep 8. PMID: 36088275.
- Long KA, Lehmann V, Gerhardt CA, et al. (2018) Psychosocial functioning and risk factors among siblings of children with cancer: An updated systematic review. Psycho-oncology. 2018 Jun;27(6):1467-1479. doi: 10.1002/pon.4669. Epub 2018 Mar 15. PMID: 29441699.
- Newton K, Fuchsia Howard A, Thorne S, et al. Facing the unknown: uncertain fertility in young adult survivors of childhood cancer. Journal of Cancer Survivorship (2021) 15:54-65
- Priboi C, van Gorp M, Maurice-Stam H, et al. Psychosexual development, sexual functioning and sexual satisfaction in long-term childhood cancer survivors: DCCSS-LATER 2 sexuality substudy. Psych oncology. 2023 Aug;32(8):1279-1288. doi: 10.1002/ pon.6181. Epub 2023 Jun 26. PMID: 37365748.
- Sankila R. Olsen JH, Anderson H, et al. (1998). Risk of cancer among offspring of childhood cancer survivors. N Engl J Med 1998; 338:1339-1344. DOI: 10.1056/ NEJM199805073381902
- Schover LR. (2005) Sexuality and fertility after cancer. Hematology Am Soc Hematol Educ Program. 2005:523-7. doi: 10.1182/asheducation-2005.1.523. PMID: 16304430.
- Seppänen VI, Artama MS, Malila NK, et al. (2016) Risk for congenital anomalies in offspring of childhood, adolescent and young adult cancer survivors. Int J Cancer. Childhood Cancer Survivors.indb 86 24-10-2025 07:14:00 PM Chapter 3 / Relationships 87 2016 Oct 15;139(8):1721-30. doi: 10.1002/ijc.30226. Epub 2016 Jun 30. PMID: 27280956
- Signorello LB, Mulvihill JJ, Green DM, et al. (2011) Congenital anomalies in the children of cancer survivors: a report from the childhood cancer survivor study. J Clin Oncol. 2012 Jan 20;30(3):239-45. doi: 10.1200/JCO.2011.37.2938. Epub 2011 Dec 12. PMID: 22162566; PMCID: PMC3269950
Resources
- Alex’s Lemonade Stand Foundation
- American Association of Sex Educators, Counselors, and Therapists (AASECT)
- Genetic Alliance
- Genetic Information Nondiscrimination Act (GINA)
- Livestrong Fertility
- National Cancer Institute
- National Council of Genetic Counselors
- RESOLVE: The National Fertility Association
Chapter 4: Navigating the System
References
- Fiala MA. (2021) Disparities in health care affordability among childhood cancer survivors persist following the Affordable Care Act. Pediatr Blood Cancer. (2021) Dec;68(12): e29370. doi: 10.1002/pbc.29370. Epub 2021 Oct 9. PMID: 34626446.
- Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers, Version 6.0 (October 2023)
- Mariotto B, et al. (2009). Long-term survivors of childhood cancers in the United States. Cancer Epidemiol Biomarkers Prev, 18(4): 1033–40
- Wolfson J, Ruccione K, Reaman GH. Health care reform 2010: expected favorable impact on childhood cancer patients and survivors. Cancer J. 2010 Nov-Dec;16(6):554-62. doi: 10.1097/PPO.0b013e3181feee83. PMID: 21131785.
- Weiner SL, et al. (2010). Pediatric cancer: advocacy, insurance, education, and employment. In Principles and Practice of Pediatric Oncology, 1441–1450. In Pizzo PA and Poplack DG, (Eds.), Philadelphia, PA: Lippincott, Williams & Wilkins. Philadelphia, PA.
Resources
- Alex’s Lemonade Stand Foundation
- Federal Social Security Administration (SSA)
- Help obtaining adequate insurance – Triage Cancer
- Passport for Care - Survivor Care Plans by Children’s Oncology Group (V6, Nov 2023)
Disabilities and Education
- Administration of Community Living (ACL)
- Administration of Community Living (ACL) – Disability and Information and Access Locator (DIAL)
- Advocacy Institute
- American Childhood Cancer Organization – IEP/Education
- American Disabilities Act – Disability Rights Guide
- Cancer Nation
- Center for Parent Information & Resources (CPIR)
- Civil Rights Division, US Department of Justice – Submit a Complaint
- Disability Rights Legal Center
- Disabled Adult Child (DAC)
- Disabled Adult Child (DAC) - Find your local office, call for an appointment
- FastWeb – college scholarships
- Federal Student Aid Program
- Individuals with Disabilities Education Act (IDEA), US Department of Education
- Learning Disabilities Association of America
- Northwestern Mutual Foundation College scholarships
Employment Rights and Benefits
- Employee Benefits Security Administration, US Department of Labor
- Employee Retirement Income Security Act (ERISA)
- Equal Employment Opportunity Commission (EEOC)
- Family and Medical Leave Act
- Health Insurance Portability and Accountability Act of 1996 (HIPAA)
- Job Accommodation Network
- Office of Disability Employment Policy, US Department of Labor
- Rehabilitation Services Administration, US Department of Education
Health Insurance and Financial Assistance
Chapter 5: Staying Healthy
References
- American Cancer Society, www.cancer.org, https://www.cancer.org/cancer/risk-prevention /tobacco/health-risks-of-tobacco.html
- Bradley KA, et al. (1998). Medical risks for women who drink alcohol. Journal of General Internal Medicine, 13(9): 627–39
- Capelli C, Miller KA, Ritt-Olson A, et al. (2021), Binge drinking, tobacco, and marijuana use among young adult childhood cancer survivors: a longitudinal study. Journal of Pediat- ric Oncology Nursing, 38(5), 285-294. https://doi.org/10.1177/10434542211011036
- Children’s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Child- hood, Adolescent, and Young Adult Cancers (version 6.0 October 2023). (COG LTFU Guidelines) www.survivorshipguidelines.org
- Centers for Disease Control and Prevention (CDC) Website: www.cdc.gov/physical-activity/
- Hollen PJ, Hobbie WL, et al. (2007). Substance use risk behaviors and decision-making skills among cancer-surviving adolescents. J Pediatr Oncol Nurs, 24(5): 264–73.
- Stolley MR, et al. (2010) Diet and physical activity in childhood cancer survivors: a review of the literature. Ann Behav Med, 39(3): 232–49.
- Tobacco Use: Targeting the nation’s leading killer at a glance (2011) Retrieved April 21, 2012, from https://stacks.cdc.gov/view/cdc/5527
- Wasserman AL, et al. (1987) The psychological status of survivors of childhood/adolescent Hodgkin’s disease. American Journal of Diseases of Children, 141: 626–31
Resources
- Children’s Oncology Group (V6, 2023). Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
- Passport for Care, Survivor Care Plans by Children’s Oncology Group (V6, Nov 2023)
- Alcoholics Anonymous (AA)
- American Academy of Dermatology - sunscreen sun protection
- American Cancer Society – Tobacco
- Centers for Disease Control and Prevention (CDC) Smoking/vaping
- Centers for Disease Control and Prevention (CDC) Skin cancer/sun protection
- Centers for Disease Control (CDC) – Vaccination/immunization recommendations (2025)
- Centers for Disease Control (CDC) – Physical activity/exercise
- CDC photos
- FIGURE 5-1. Health benefits of physical activity for children.
- FIGURE 5-2. Download the quitSTART app to get started on your quit smoking journey. It can help you create a quit plan, find tips to help you quit smoking, manage cravings, and more!
- FIGURE 5-3. Use sunscreen of at least 30 SPF to protect yourself from damaging UV rays
Chapter 6: Genetic Testing and Childhood Cancer
References/Resources
- Children’s Oncology Group. (V6, 2023). Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
- Clinical trials
- Drug development
- Genetic testing in cancer
- Genetic panels (CHOP)
- NTRK-fusion positive cancers
- US Food and Drug Administration (FDA)
- National Cancer Institute–Children’s Oncology Group; Pediatric MATCH Trial (revised June 2023)
Chapter 7: Diseases
References
- American Cancer Society, 2025
- Baliga S, Yock TI. (2019) Proton beam therapy in pediatric oncology. Curr Opin Pediatr. 2019 Feb;31(1):28-34.
- Dixon SB, Chen Y, Yasui Y, et al. (2020). Reduced Morbidity and Mortality in Survivors of Childhood Acute Lymphoblastic Leukemia: A Report from the Childhood Cancer Survivor Study. J. Clin Oncol. 38: 3418-3429. doi: 10.1200/JCO.20.00493. Epub 2020 Jul 24. PMID: 32706634; PMCID: PMC7527155
- Children’s Brain Tumor Foundation (CBTF)
- Hodgson D, Kieckmann K. et al. (2015) Implementation of contemporary radiation therapy planning concepts for pediatric Hodkin lymphoma: Guidelines from the International Lymphoma Radiation Oncology Group: Practical Radiation Oncology (2015) 5, 85-92
- Hunger SP, Lu X, Devidas M, et al. (2012) Improved survival for children and adolescents with acute lymphoblastic leukemia between 1990 and 2005: a report from the children’s oncology group. J Clin Oncol. 2012 May 10;30(14):1663-9. doi: 10.1200/JCO.2011.37.8018. Epub 2012 Mar 12. PMID: 22412151; PMCID: PMC3383113
- Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers, Version 6.0 (October 2023)
- Louis DN, Perry A, Wesseling P, et al. The 2021 WHO Classification of Tumors of the Central Nervous System: a summary, Neuro-Oncology, Volume 23, Issue 8, August 2021, Pages 1231–1251, https://doi.org/10.1093/neuonc/noab106
- Miller KD, Fidler-Benaoudia M, Keegan TH, et al. (2020) Cancer statistics for adolescents and young adults, 2020. CA Cancer J Clin 2020; 70:443–459.11.
- Mulder RL, Hudson MM, Bhatia S, et al. (2020). Updated Breast Cancer Surveillance Recommendations for Female Survivors of Childhood, Adolescent, and Young Adult Cancer from the International Guideline Harmonization Group. J Clin Oncol 38: 4194-4207. doi: 10.1200/JCO.20.00562. Epub 2020 Sep 29. PMID: 33078972; PMCID: PMC7723685
- Oeffinger KC, Stratton KL, Hudson MM et al. (2021). Impact of Risk-Adapted Therapy for Pediatric Hodgkin Lymphoma on Risk of long-Term Morbidity: A Report from the Childhood Cancer Survivor Study. J Clin Oncology 39: 2266-2275. doi: 10.1200/JCO.20.01186. Epub 2021 Feb 25. PMID: 33630659; PMCID: PMC826090615.
- Pacenta HL, Laetsch TW, John S. CD19 CAR T Cells for the treatment of pediatric Pre‑B Cell Acute Lymphoblastic Leukemia. Pediatric Drugs (2020) 22:1–11. doi.org/10.1007/s40272-019-00370-6
- Reddy AT, Strother DR, Judkins AR, et al. (2020) Three-Dimensional Conformal Radiation for Atypical Teratoid/Rhabdoid Tumor: A Report from the Children’s Oncology Group Trial ACNS0333. J Clin Oncol. 2020 Apr 10;38(11):1175-1185.: PMC7145589.
- Ries LAG, Smith MA, Gurney JG, et al (eds). (1999) Cancer Incidence and Survival among Children and Adolescents: United States SEER Program 1975-1995, National Cancer Institute, SEER Program. NIH Pub. No. 99-4649. Bethesda, MD.
- Weil BR, Murphy AJ, Liu Q, et al. (2023) Late Health Outcomes Among Survivors of Wilms Tumor Diagnosed Over Three Decades: A Report from the Childhood Cancer Survivor Study. J Clin Oncol. 2023 May 10;41(14):2638-2650. doi: 10.1200/JCO.22.02111. Epub 2023 Jan 24. PMID: 36693221; PMCID: PMC10414738.
Resources
- American Cancer Society (ACS)
- Children’s Brain Tumor Foundation (CBTF)
- Children’s Oncology Group (V6, 2023). Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
- Passport for Care, Survivor Care Plans by Children’s Oncology Group (V6, Nov 2023)
- National Cancer Institute (NIH)
Chapter 8: Fatigue
References
- American Cancer Society, Managing fatigue or weakness. https://www.cancer.org/cancer/managing-cancer/side-effects/fatigue/managing-cancer-related-fatigue.html
- Children’s Oncology Group. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers, (V6, 2023).
- Ebede CC, Jang Y, Escalante CP. Cancer-Related Fatigue in Cancer Survivorship. (2017) Med Clin North Am. 2017 Nov;101(6):1085-1097. doi: 10.1016/j.mcna.2017.06.007. Epub 2017 Aug 25. PMID: 28992856
- Lin PJ, Kleckner IR, Loh KP, et al. (2019) Influence of Yoga on Cancer-Related Fatigue and on Mediational Relationships Between Changes in Sleep and Cancer-Related Fatigue: A Nationwide, Multicenter Randomized Controlled Trial of Yoga in Cancer Survivors. Integr Cancer Ther. 2019 Jan-Dec;18:1534735419855134. doi: 10.1177/1534735419855134.
- Shin, H., Dudley, W. N., Bhakta, N., et al. (2023). Associations of symptom clusters and health outcomes in adult survivors of childhood cancer: A report from the St Jude lifetime cohort study. Journal of Clinical Oncology, 41(3), 497- 507. https://doi.org/10.1200/JCO.22.00361
- Williamson LR, Effinger KE, Wasilewski-Masker K, et al. (2021). Self-reported late effect symptom clusters among young pediatric cancer survivors. Supportive Care in Cancer, 29(12), 8077-8087. https://doi.org/10.1007/s00520-021-06332-4
Resources
Chapter 9: Brain and Nerves
References
- Brown RT, Sawyer MB, Antoniou G, et al. (1996) A 3-year follow-up of the intellectual and academic functioning of children receiving central nervous system prophylactic chemotherapy for leukemia. J Dev Behav Pediatr. 1996 Dec;17(6):392-8. doi: 10.1097/00004703-199612000-00004. PMID: 8960568.
- Freeman JM, Vining EPG, and Pillas DJ. Seizures and Epilepsy in Childhood: A Guide. 3rd edition, Johns Hopkins University Press, Baltimore, 2003, 426 pp. Kevin Farrell MD, FRCPC; https://doi.org/10.1046/j.1528-1157.2003.36203.x This book is an extremely useful resource for parents of children with epilepsy. and provides a systematic review of the medical and social aspects that can affect families of children with seizures.
- Krull KR, Hardy KK, Kahalley LS et al. (2018) Neurocognitive Outcomes and Interventions in Long-Term Survivors of Childhood Cancer, Clin Oncol 36:2181-2189.
- MacDonald SM, Bindra RS, Sethi R, and Ladra M, Principles of Radiation Oncology. In Gajjar A, Reaman GH, Racadio JM, Smith FO. (eds.), (2018) Brain Tumors in Children, Springer Nature, 33-37.
- Montour-Proulx I, Kuehn SM, Keene DL, et al. (2005) Cognitive changes in children treated for acute lymphoblastic leukemia with chemotherapy only according to the Pediatric Oncology Group 9605 protocol. J Child Neurol. 2005 Feb;20(2):129-33. doi: 10.1177/08830738050200020901. PMID: 15794179.
- Paltin I, Schofield HL and Baran J. (2018) Rehabilitation and Pediatric Oncology: Supporting Patients and Families During and After Treatment. Curr Phys Med Rehabil Rep 6, 107–114 (2018). https://doi.org/10.1007/s40141-018-0181-1
- Schatz J, Kramer JH, Ablin A, Matthay KK. (2000) Processing speed, working memory, and IQ: a developmental model of cognitive deficits following cranial radiation therapy. Neuropsychology. 2000 Apr;14(2):189-200. doi: 10.1037//0894-4105.14.2.189. PMID: 10791859.
- Smibert E, Anderson V, GodberT, et al. Risk factors for intellectual and educational sequelae of cranial irradiation in childhood acute lymphoblastic leukemia. Br J Cancer 73, 825–830 (1996). https://doi.org/10.1038/bjc.1996.145
Resources
Chapter 10: Hormone-Producing Glands
References
- Children’s Oncology Group. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers, Version 6.0 (October 2023) Available online: http://www.survivorshipguidelines.org Click under Health Links for: Endocrine System: Central Adrenal Insufficiency, Growth Hormone Deficiency, Hyperprolactinemia, Hypopituitarism, Precocious Puberty, Thyroid Cancer
- Chemaitilly W, Li Z, Brinkman TM, et al. (2022). Primary hypothyroidism in childhood cancer survivors: Prevalence, risk factors, and long-term consequences. Cancer, 128(3), 606-614. https://doi.org/10.1002/cncr.33969
- Chemaitilly W, Liu Q, Van Iersel L, et al. (2019). Leydig Cell Function in Male Survivors of Childhood Cancer: A Report from the St Jude Lifetime Cohort Study. Journal of Clinical Oncology, 37 (32), 3018-3031. doi: 10.1200/JCO.19.00738.
- Chemaitilly W, Li Z, Krasin MJ, et al: (2017) Premature ovarian insufficiency in childhood cancer survivors: a report from the St. Jude Lifetime Cohort. J Clin Endocrinol Metab 102(7):2242-50, 2017.
- DeMayo FJ, Zhao B, Takamoto N, & Tsai SY. (2002). Mechanisms of action of estrogen and progesterone. Annals of the New York Academy of Sciences, 955, 48–406. https://doi.org/10.1111/j.1749-6632.2002.tb02765.x
- Eugster EA. (2019) Treatment of Central Precocious Puberty. (2019) J Endocr Soc. 2019;3(5):965-972. Published 2019 Mar 28. doi:10.1210/js.2019-00036
- Khaddour K, Hana CK, Mewawalla P. (2023) Hematopoietic Stem Cell Transplantation. [Updated 2023 May 6]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK536951/
- Kota AS, Ejaz S. Precocious Puberty. [Updated 2023 Jul 4]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK544313
- Nyström A, Mörse H, Nordlöf H, et al. Anti-müllerian hormone compared with other ovarian markers after childhood cancer treatment. Acta Oncol 58(2):218-24, 2019
- Raman S, Grimberg A, Waguespack SG, et al. (2015) Risk of Neoplasia in Pediatric Patients Receiving Growth Hormone Therapy—A Report from the Pediatric Endocrine Society Drug and Therapeutics Committee, The Journal of Clinical Endocrinology & Metabolism, Volume 100, Issue 6, 1 June 2015, Pages 2192–2203, https://doi.org/10.1210/jc.2015-1002
- Sklar CA, Antal Z, Chemaitilly W, et al: Hypothalamic-pituitary and growth disorders in survivors of childhood cancer: an endocrine society clinical practice guideline. J Clin Endocrinol Metab 1;103(8):2761-2784, 2018
Resources
Chapter 11: Eyes and Ears
References
- Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers, Version 6.0 (October 2023). http://www.survivorshipguidelines.org/ Search Sensory, then subcategories: cataracts, eye health, hearing loss
- Moke DJ, Luo C, Millstein J, et al. (2021) Prevalence and risk factors for cisplatin-induced hearing loss in children, adolescents, and young adults: A multi-institutional North American cohort study. The Lancet Child & Adolescent Health, 5(4), 274-283. https://doi.org/10.1016/S2352-4641(21)00020-1
Resources
- American Academy of Audiology
- American Academy of Ophthalmology
- American Society for Deaf Children
- American Speech-Language-Hearing Association
- Hearing Loss Association of America
- Hearing impairment – books
- National Eye Institute
- Passport for Care, Survivor Care Plans by Children’s Oncology Group (V6, Nov 2023)
Chapter 12: Head and Neck
References
- Asdahl PH, Oeffinger KC, Albieri V, et al. (2021). Esophageal disease among childhood cancer survivors - a report from the Childhood Cancer Survivors Study. Pediatr Blood Cancer 68(8):e29043. doi: 10.1002/pbc.29043. Epub 2021 Apr 12. PMID: 33844445; PMCID: PMC9124525.
- Children’s Oncology Group (V6, 2023). Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
- https://www.cancer.org/cancer/types/hodgkin-lymphoma/after-treatment.html
- Mattos VD, Ferman S, Araújo Magalhães DM, et al. (2019). Dental and craniofacial alterations in long-term survivors of childhood head and neck rhabdomyosarcoma. Oral Surg Oral Med Oral Pathol Oral Radiol. 127(4),272-281. doi: 10.1016/j.oooo.2018.12.012. Epub 2018 Dec 21. PMID: 30685390.
- Milgrom, SA, van Luijk, P, Pino, R, et al. (2021). Salivary and dental complications in childhood cancer survivors treated with radiation therapy to the head and neck: A pediatric normal tissue effects in the clinic (PENTEC) comprehensive review. Int J Radiat Oncol Biol Phys. S0360-3016(21)00443-0. doi: 10.1016/j.ijrobp.2021.04.023. Epub ahead of print
Resources
- Children’s Oncology Group (V6, 2023). Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
- FACES—The National Craniofacial Association
- Let’s Face It
- Locks of Love
- Passport for Care, Survivor Care Plans by Children’s Oncology Group (V6, Nov 2023)
- Sjögren’s Syndrome Foundation
Chapter 13: Heart and Blood Vessels
References
- Armenian SH, Armstrong GT, Aune G, et al. (2018) Cardiovascular disease in survivors of childhood cancer: insights into epidemiology, pathophysiology, and prevention. J Clin Oncol. 2018 Jul 20;36(21):2135-2144. doi: 10.1200/JCO.2017.76.3920.
- Cheng SW, Wu LL, Ting AC, et al. (1999) Irradiation-induced extracranial carotid stenosis in patients with head and neck malignancies. Am J Surg. 1999 Oct;178(4):323-8. doi: 10.1016/s0002-9610(99)00184-1.
- Children’s Oncology Group. (V6, 2023). Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
- Chow EJ, Leger KJ, Bhatt NS, et al. (2019, April 15). Paediatric cardio-oncology: Epidemiology, screening, prevention, and treatment. Cardiovascular Research, 115(5), 922-934. https://doi.org/10.1093/cvr/cvz031
- Lipshultz SE, Diamond MB, Franco VI, et al. (2014, August 19). Managing chemotherapy-related cardiotoxicity in survivors of childhood cancers. Pediatric Drugs, 16(5), 373-389. https://doi.org/10.1007/s40272-014-0085-1
- Meeske KA, Nelson MD, Lavey RS, et al. (2007) Premature carotid artery disease in long-term survivors of childhood cancer treated with neck irradiation: a series of 5 cases. J Pediatr Hematol Oncol. 2007 Jul;29(7):480-4. doi: 10.1097/MPH.0b013e3180601029.
Resources
Chapter 14: Lungs
References
- American Cancer Society website: (https://www.cancer.org/cancer/risk-prevention/tobacco/health-risks-of-tobacco.html) Health Risks of Using Tobacco Products
- Armenian, Saro, Landier, Wendy, Francisco, Liton, Herrera, Claudia, Mills, George, Siyahian, Aida, et al. (2015). Long-Term Pulmonary Function in Survivors of Childhood Cancer. Journal of Clinical Oncology, 33, 1592-1600. https://doi.org/10.1200/JCO.2014.59.8318
- Dietz AC, Chen Y, Yasui Y, et al. (2016). Risk and impact of pulmonary complications in survivors of childhood cancer: A report from the childhood cancer survivor study. Cancer, 122(23), 3687-3696. https://doi.org/10.1002/cncr.30200
- Huang TT, Hudson MM, Stokes DC, et al. (2011) Pulmonary outcomes in survivors of childhood cancer: a systematic review. Chest. 2011 Oct;140(4):881-901. doi: 10.1378/chest.10-2133. Epub 2011 Mar 17. PMID: 21415131; PMCID: PMC3904488
- Interiano RB, Kaste SC, Li C, et al. (2017). Associations between treatment, scoliosis, pulmonary function, and physical performance in long-term survivors of sarcoma. Journal of Cancer Survivorship, 11(5), 553-561. https://doi.org/10.1007/s11764-017-0624-1
- Children’s Oncology Group (V6, 2023). Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
Resources
- American Cancer Society - Stay Away from Tobacco
- smokefree.gov
- Centers for Disease Control and Prevention (CDC)
- Children’s Oncology Group (V6, 2023). Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
- Passport for Care, Survivor Care Plans by Children’s Oncology Group (V6, Nov 2023)
- Physical activity basics and your health
Chapter 15: Kidneys, Bladder, and Genitals
References
- Children’s Oncology Group (V6, 2023). Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
- Ginsberg, JP, Hobbie, WL, et al. (2004). Prevalence of and risk factors for hydrocele in survivors of Wilms Tumor. Pediatr Blood and Cancer, 42: 361–363.
- Kapoor M et al. Malignancy and renal disease. (2001). Crit Care Clin, 17: 571–598.
- Nada A, Jetton JG. (2021). Pediatric onco-nephrology: time to spread the word: Part I: early kidney involvement in children with malignancy. Pediatr Nephrol. 36(8):2227-2255. doi: 10.1007/s00467-020-04800-3. Epub 2020 Nov 27. PMID: 33245421.
Resources
Chapter 16: Liver, Stomach, and Intestines
References
- Bardi E, Mulder RL, van Dalen EC, et al. (2021). Late hepatic toxicity surveillance for survivors of childhood, adolescent and young adult cancer: Recommendations from the international late effects of childhood cancer guideline harmonization group. Cancer Treatment Reviews, 100, 102296. https://doi.org/10.1016/j.ctrv.2021.102296
- Castellino S, Muir A, Shah A, et al. (2010). Hepato-biliary late effects in survivors of childhood and adolescent cancer: a report from the Children's Oncology Group. Pediatr Blood Cancer. 2010 May;54(5):663-9. doi: 10.1002/pbc.22265.
- Children’s Oncology Group (V6, 2023). Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
- Strasser SI, Sullivan KM, Myerson D, et al. (1999) Cirrhosis of the liver in long-term marrow transplant survivors. Blood. 1999 May 15;93(10):3259-66. PMID: 10233877
- S. Centers for Disease Control (CDC)
Resources
Chapter 17: Immune System
References
- Bisharat N, Omari H, Lavi I, Raz R. (2001). Risk of infection and death among post-sple- nectomy patients. J Infect. 2001 Oct;43(3):182-6. doi: 10.1053/jinf.2001.0904. PMID: 11798256.
- Children’s Oncology Group (V6, 2023). Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
- Chisholm JC. (2007). Reimmunization aft er therapy for childhood cancer. Clin Infect Dis. 2007 Mar 1;44(5):643-5. doi: 10.1086/511650. Epub 2007 Jan 24. PMID: 17278053.
- Guilcher GMT, Rivard L, Huang JT, et al. (2021) Immune function in childhood cancer survivors: a Children’s Oncology Group review. Lancet Child Adolesc Health. 2021 Apr;5(4):284-294. doi: 10.1016/S2352-4642(20)30312-6. Epub 2021 Feb 16. PMID: 33600774; PMCID: PMC8725381
- Horwitz ME, Sullivan KM. (2006). Chronic graft-versus-host disease. Blood Rev. 2006 Jan;20(1):15-27. doi: 10.1016/j.blre.2005.01.007. Epub 2005 Apr 7. PMID: 16426941.
- S. Centers for Disease Control and Prevention, Human Papillomavirus (www.cdc.gov/hpv/).
- Van Tilburg CM, Sanders EA, Rovers MM, et al. (2006). Loss of antibodies and response to (re-) vaccination in children after treatment for acute lymphocytic leukemia: a systematic review. Leukemia. 2006 Oct;20(10):1717-22. doi: 10.1038/sj.leu.2404326. Epub 2006 Aug 3. PMID: 16888619
Resources
- Children’s Oncology Group (V6, 2023). Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
- National Cancer Institute
- National Lymphedema Network
- Passport for Care, Survivor Care Plans by Children’s Oncology Group (V6, Nov 2023)
- U.S. Centers for Disease Control and Prevention – Immunization Schedules
Chapter 18: Muscles and Bones
References
- Children’s Oncology Group (V6, 2023). Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
- Fernandez-Pineda I, Hudson, MM, Pappo AS, et al. (2017). Long-term functional outcomes and quality of life in adult survivors of childhood extremity sarcomas: A report from the St. Jude lifetime cohort study. Journal of Cancer Survivorship, 11(1), 1-12. https://doi.org/10.1007/s11764-016-0556-1
- Hobbie WL, Li Y, Carlson C, Goldfarb S, et al. (2022). Late effects in survivors of high-risk neuroblastoma following stem cell transplant with and without total body irradiation. Pediatric Blood & Cancer, 69(3), e29537-n/a. https://doi.org/10.1002/pbc.29537
- Paulino AC. (2004) Late effects of radiotherapy for pediatric extremity sarcomas. Int J Radiat Oncol Biol Phys. 2004 Sep 1;60(1):265-74. doi: 10.1016/j.ijrobp.2004.02.001. PMID: 15337565
- Together by St. JudeTM, Spinal Problems in Childhood Cancer Survivors (https://together.stjude.org/en-us/treatment-tests-procedures/long-term-effects/spinal-problems.html)
Resources
Chapter 19: Skin, Breasts, and Hair
References
- Children’s Oncology Group (V6, 2023). Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
- Fürst CJ, Lundell M, Ahlbäck SO, Holm LE. (1989). Breast hypoplasia following irradiation of the female breast in infancy and early childhood. Acta Oncol1989;28(4):519-23. doi: 10.3109/02841868909092262. PMID: 2789829.
- Henderson TO, Amsterdam A, Bhatia S, Hudson MM et al. (2010). Systematic review: surveillance for breast cancer in women treated with chest radiation for childhood, adolescent, or young adult cancer. Ann Intern Med 2010 Apr 6;152(7):444-55; W144-54. doi: 10.7326/0003-4819-152-7-201004060-00009. PMID: 20368650; PMCID: PMC2857928.
- Ogg S, Klosky JL, Chemaitilly W, et al (2020). Breastfeeding practices among childhood cancer survivors. J Cancer Surviv 2020 Aug;14(4):586-599. doi: 10.1007/s11764-020-00882-y. Epub 2020 Apr 14. PMID: 32291564; PMCID: PMC7384306.
- Rosenfield NS, Haller JO, Berdon WE. (1989). Failure of development of the growing breast after radiation therapy. Pediatr Radiol 1989;19(2):124-7. doi: 10.1007/BF02387902. PMID: 2922227.
- Tosti A, Piraccini BM, Vincenzi C, Misciali C. (2005). Permanent alopecia after busulfan chemotherapy. Br J Dermatol 2005 May;152(5):1056-8. doi: 10.1111/j.1365-2133.2005.06469.x. PMID: 15888171.
- Travis LB, Hill DA, Dores GM, et al. (2003). Breast cancer following radiotherapy and chemotherapy among young women with Hodgkin disease. JAMA 2003 Jul 23;290(4):465-75. doi: 10.1001/jama.290.4.465. Erratum in: JAMA. 2003 Sep 10;290(10):1318. PMID: 12876089.
Resources
Chapter 20: Subsequent Malignancies
References:
- American Cancer Society (2024). Website: cancer.org – Second Cancers
- Bhatia S, et al. (2007). Therapy-related myelodysplasia and acute myeloid leukemia after Ewing sarcoma and primitive neuroectodermal tumor of bone: A report from the Children’s Oncology Group. Blood, 109(1): 46–51.
- Children’s Oncology Group (V6, 2023). Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
- Dracham CB, Shankar A, Madan R. (2018) Radiation induced secondary malignancies: a review article. Radiat Oncol J. 2018 Jun;36(2):85-94. doi: 10.3857/roj.2018.00290. Epub 2018 Jun 29. PMID: 29983028; PMCID: PMC6074073
- Goshen Y. (2007). High incidence of meningioma in cranial irradiated survivors of childhood acute lymphoblastic leukemia. Pediatr Blood Cancer, 49(3): 294–297.
- Indelicato DJ, Bates JE, Mailhot Vega RB, et al. (2021). Second tumor risk in children treated with proton therapy. Pediatric Blood & Cancer, 68(7), e28941-n/a. https://doi.org/10.1002/pbc.28941
- Mulder RL, Hudson MM, Bhatia S, et al. (2020). Updated breast cancer surveillance recommendations for female survivors of childhood, adolescent, and young adult cancer from the international guideline harmonization group. Journal of Clinical Oncology, 38(35), 4194-4207. https://doi.org/10.1200/JCO.20.00562
- National Cancer Institute, website: https://dceg.cancer.gov, Second Cancers
- Smith MA, et al. (1999). Secondary leukemia or myelodysplastic syndrome after treatment with epipodophyllotoxins. J Clin Oncol, 17(2): 569–577.
Resources
- Alex’s Lemonade Stand Foundation
- American Cancer Society (2024). Website: cancer.org – Second Cancers
- Children’s Oncology Group (V6, 2023). Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
- National Cancer Institute – Second Cancers
- Passport for Care, Survivor Care Plans by Children’s Oncology Group (V6, Nov 2023)
