{"entity":{"id":"b-survivorship","kind":"bottleneck","name":"Survivorship and late effects are neglected","aka":[],"tldr":"Tens of millions of people live after cancer with heart damage, infertility, second cancers and fear, and few services.","summary":"More than 18 million people in the US alone are living after a cancer diagnosis, and the number grows every year as treatment improves. Many carry the consequences of that treatment: anthracycline and trastuzumab cardiotoxicity, radiation-induced second cancers, infertility, neuropathy, cognitive change, endocrine failure, lymphoedema, and fear of recurrence, with the burden greatest in those treated as children, of whom about two-thirds have a chronic health condition by adulthood and more than a quarter a severe one. Survivorship care is fragmented between oncology, which discharges, and primary care, which often lacks the information or guidance to follow up. Late effects are poorly tracked because registries record incidence and death but not morbidity, and because survivorship research and services have no billing code or sponsor. Structured risk-based follow-up, cardio-oncology and exercise-oncology services, and lifelong registries are the evidence-based components that exist but are unevenly delivered.","asOf":"2026-09-08","links":[{"label":"NCI Office of Cancer Survivorship statistics","url":"https://cancercontrol.cancer.gov/ocs/statistics"},{"label":"Oeffinger et al., Chronic health conditions in adult survivors of childhood cancer (NEJM 2006)","url":"https://doi.org/10.1056/NEJMsa060185"},{"label":"Children's Oncology Group Long-Term Follow-Up Guidelines","url":"http://www.survivorshipguidelines.org/"},{"label":"Childhood Cancer Survivor Study","url":"https://ccss.stjude.org/"}],"tags":[],"related":["seer","idea-exercise-as-adjuvant","idea-acc-auto-generated-survivorship-plans","idea-acc-risk-stratified-cardio-oncology-pathway","idea-acc-default-fertility-preservation-referral","idea-acc-national-late-effects-registry","idea-acc-tailored-second-cancer-screening","idea-acc-return-to-work-rehabilitation","idea-acc-cognitive-rehabilitation-after-chemotherapy","idea-acc-cardiometabolic-clinic-hormone-therapy","idea-acc-aya-survivorship-passport","idea-acc-survivor-biobank-late-effect-prediction","idea-acc-lymphoedema-prospective-surveillance","idea-moon-survivor-lifelong-care-model"],"cancers":["hodgkin-lymphoma","all-leukemia","neuroblastoma","breast-hr-positive","breast-her2-positive","thyroid","prostate"],"sections":["supportive-care"],"technologies":["cardio-oncology","exercise-oncology","scalp-cooling","fertility-sparing-endometrial"],"targets":[],"drugs":[],"companies":["childrens-oncology-group"],"institutions":["nci","asco"],"pathways":[],"terms":["trastuzumab-cardiotoxicity","late-recurrence","tsh-suppression"],"trials":[],"people":[],"bottlenecks":[],"keyPapers":["paper-oeffinger-n-engl-j-med"],"journals":[],"dependsOn":[],"notes":[],"stage":"access-delivery","severity":"moderate","metrics":[{"label":"People living in the US with a history of cancer (2022 estimate)","value":"More than 18 million","source":"NCI Office of Cancer Survivorship statistics","url":"https://cancercontrol.cancer.gov/ocs/statistics"},{"label":"Adult survivors of childhood cancer with at least one chronic health condition, and with a severe or life-threatening condition (CCSS)","value":"62.3% and 27.5%","source":"Oeffinger et al., NEJM 2006","url":"https://doi.org/10.1056/NEJMsa060185"}],"causes":["Oncology services are funded and organised around active treatment, not decades of follow-up.","Primary care receives incomplete treatment summaries and has little guidance on late-effect surveillance.","Registries capture diagnosis and death but not late morbidity, so the burden is invisible in official statistics.","Late effects emerge years after trials end, so trial data rarely capture them.","Survivorship interventions have no commercial sponsor and little dedicated research funding."],"currentEfforts":["The Childhood Cancer Survivor Study and St Jude LIFE cohorts follow tens of thousands of survivors for decades to quantify late effects.","The Children's Oncology Group Long-Term Follow-Up Guidelines define risk-based surveillance after childhood cancer.","The 2005 Institute of Medicine report From Cancer Patient to Cancer Survivor established survivorship care plans, now an ASCO and Commission on Cancer standard.","PanCareFollowUp and PanCareSurFup coordinate European survivorship guidelines and cohorts.","Cardio-oncology services and ESC cardio-oncology guidelines (2022) formalise surveillance for anthracycline and HER2-therapy cardiotoxicity.","The NCI Office of Cancer Survivorship funds survivorship research and maintains national statistics."],"successLooksLike":"Every patient completing curative treatment receives a risk-stratified follow-up plan shared with primary care, late effects are recorded in cancer registries, and the excess morbidity of survivors relative to matched peers is measured and declining."},"route":"/bottlenecks/b-survivorship/","neighbours":{"collection":[{"id":"bccss","kind":"collection","name":"British Childhood Cancer Survivor Study (BCCSS)","route":"/collections/bccss/"},{"id":"ighg","kind":"collection","name":"International Guideline Harmonization Group for late effects of childhood cancer","route":"/collections/ighg/"},{"id":"pancaresurfup","kind":"collection","name":"PanCareSurFup and the European survivor cohorts","route":"/collections/pancaresurfup/"},{"id":"seer","kind":"collection","name":"SEER (Surveillance, Epidemiology, and End Results)","route":"/collections/seer/"},{"id":"sjlife","kind":"collection","name":"St Jude Lifetime Cohort Study (SJLIFE)","route":"/collections/sjlife/"}],"idea":[{"id":"idea-nl-exercise-dose-finding","kind":"idea","name":"A dose-finding trial for exercise after cancer","route":"/ideas/idea-nl-exercise-dose-finding/"},{"id":"idea-moon-adult-late-effects-registry","kind":"idea","name":"A lifelong late-effects registry linked to every treatment for adult survivors","route":"/ideas/idea-moon-adult-late-effects-registry/"},{"id":"idea-acc-portable-treatment-summary","kind":"idea","name":"A machine-readable treatment summary handed to every patient and readable by any hospital","route":"/ideas/idea-acc-portable-treatment-summary/"},{"id":"idea-acc-national-late-effects-registry","kind":"idea","name":"A national late-effects registry linking treatment exposures to outcomes decades later","route":"/ideas/idea-acc-national-late-effects-registry/"},{"id":"lymphoma-ev-radiotherapy-free-early-hodgkin","kind":"idea","name":"A radiotherapy-free cure for early Hodgkin lymphoma that actually holds","route":"/ideas/lymphoma-ev-radiotherapy-free-early-hodgkin/"},{"id":"idea-acc-risk-stratified-cardio-oncology-pathway","kind":"idea","name":"A risk-stratified cardio-oncology pathway for everyone receiving heart-toxic cancer therapy","route":"/ideas/idea-acc-risk-stratified-cardio-oncology-pathway/"},{"id":"idea-acc-survivor-biobank-late-effect-prediction","kind":"idea","name":"A survivor biobank to find who will develop late effects before they do","route":"/ideas/idea-acc-survivor-biobank-late-effect-prediction/"},{"id":"idea-acc-aya-survivorship-passport","kind":"idea","name":"A survivorship passport app for adolescent and young adult survivors","route":"/ideas/idea-acc-aya-survivorship-passport/"},{"id":"idea-fund-survivorship-endowment-levy","kind":"idea","name":"A survivorship research endowment funded by a levy on curative therapy prices","route":"/ideas/idea-fund-survivorship-endowment-levy/"},{"id":"idea-rejuv-registry-randomised-screening-in-survivors","kind":"idea","name":"Ask whether survivorship screening saves lives, using registry-based randomisation","route":"/ideas/idea-rejuv-registry-randomised-screening-in-survivors/"},{"id":"idea-moon-cardioprotection-by-default","kind":"idea","name":"Biomarker-guided cardioprotection for everyone on cardiotoxic cancer therapy","route":"/ideas/idea-moon-cardioprotection-by-default/"},{"id":"idea-acc-cardiometabolic-clinic-hormone-therapy","kind":"idea","name":"Cardiometabolic screening and treatment for survivors on long-term hormone therapy","route":"/ideas/idea-acc-cardiometabolic-clinic-hormone-therapy/"},{"id":"idea-bio1-senolytics-after-therapy","kind":"idea","name":"Clear the zombie cells left behind by chemotherapy and radiotherapy","route":"/ideas/idea-bio1-senolytics-after-therapy/"},{"id":"idea-acc-default-fertility-preservation-referral","kind":"idea","name":"Default fertility preservation referral for every patient under 40 before treatment","route":"/ideas/idea-acc-default-fertility-preservation-referral/"},{"id":"idea-moon-fertility-preservation-default","kind":"idea","name":"Fertility preservation offered and funded by default before gonadotoxic treatment","route":"/ideas/idea-moon-fertility-preservation-default/"},{"id":"idea-data-registry-follow-up-of-trial-participants","kind":"idea","name":"Follow every trial participant for 30 years through registry linkage","route":"/ideas/idea-data-registry-follow-up-of-trial-participants/"},{"id":"idea-moon-caregiver-in-the-plan","kind":"idea","name":"Formal caregiver assessment and training written into every treatment plan","route":"/ideas/idea-moon-caregiver-in-the-plan/"},{"id":"idea-bio2-prehabilitation-standard","kind":"idea","name":"Four weeks of training and nutrition before major cancer surgery, as standard","route":"/ideas/idea-bio2-prehabilitation-standard/"},{"id":"idea-crc-exercise-as-a-funded-treatment","kind":"idea","name":"Fund structured exercise 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survivors with known high-risk exposures","route":"/ideas/idea-acc-tailored-second-cancer-screening/"},{"id":"idea-nl-sleep-circadian-survivorship-rct","kind":"idea","name":"Treat insomnia in survivors and measure whether the cancer notices","route":"/ideas/idea-nl-sleep-circadian-survivorship-rct/"},{"id":"idea-acc-cognitive-rehabilitation-after-chemotherapy","kind":"idea","name":"Trials of structured cognitive rehabilitation for cancer-related cognitive impairment","route":"/ideas/idea-acc-cognitive-rehabilitation-after-chemotherapy/"},{"id":"idea-bio2-mrd-guided-endocrine-duration","kind":"idea","name":"Use residual disease tests to decide who needs ten years of hormone therapy","route":"/ideas/idea-bio2-mrd-guided-endocrine-duration/"},{"id":"idea-acc-return-to-work-rehabilitation","kind":"idea","name":"Vocational rehabilitation integrated into cancer care so survivors can return to work","route":"/ideas/idea-acc-return-to-work-rehabilitation/"},{"id":"idea-rejuv-rehabilitation-prescription-at-discharge","kind":"idea","name":"Write a rehabilitation prescription at the end of treatment, and fund it like a drug","route":"/ideas/idea-rejuv-rehabilitation-prescription-at-discharge/"}],"cancer":[{"id":"all-leukemia","kind":"cancer","name":"Acute lymphoblastic leukaemia","route":"/cancers/all-leukemia/"},{"id":"atrt","kind":"cancer","name":"Atypical teratoid/rhabdoid tumour (ATRT)","route":"/cancers/atrt/"},{"id":"cns-germ-cell-tumours","kind":"cancer","name":"Central nervous system germ cell tumours (germinoma and non-germinomatous)","route":"/cancers/cns-germ-cell-tumours/"},{"id":"colorectal","kind":"cancer","name":"Colorectal cancer","route":"/cancers/colorectal/"},{"id":"craniopharyngioma","kind":"cancer","name":"Craniopharyngioma","route":"/cancers/craniopharyngioma/"},{"id":"ependymoma","kind":"cancer","name":"Ependymoma","route":"/cancers/ependymoma/"},{"id":"paediatric-germ-cell-tumours","kind":"cancer","name":"Germ cell tumours of childhood and adolescence (extracranial and CNS)","route":"/cancers/paediatric-germ-cell-tumours/"},{"id":"breast-her2-positive","kind":"cancer","name":"HER2-positive breast cancer","route":"/cancers/breast-her2-positive/"},{"id":"hodgkin-lymphoma","kind":"cancer","name":"Hodgkin lymphoma","route":"/cancers/hodgkin-lymphoma/"},{"id":"breast-hr-positive","kind":"cancer","name":"HR-positive / HER2-negative breast cancer","route":"/cancers/breast-hr-positive/"},{"id":"neuroblastoma","kind":"cancer","name":"Neuroblastoma (paediatric)","route":"/cancers/neuroblastoma/"},{"id":"paediatric-low-grade-glioma","kind":"cancer","name":"Paediatric low-grade glioma","route":"/cancers/paediatric-low-grade-glioma/"},{"id":"prostate","kind":"cancer","name":"Prostate cancer","route":"/cancers/prostate/"},{"id":"thyroid","kind":"cancer","name":"Thyroid cancer","route":"/cancers/thyroid/"}],"section":[{"id":"rejuvenation","kind":"section","name":"Recovery & Rejuvenation","route":"/fronts/rejuvenation/"},{"id":"supportive-care","kind":"section","name":"Supportive Care & Survivorship","route":"/fronts/supportive-care/"}],"technology":[{"id":"rejuv-mind-visible-difference-head-and-neck","kind":"technology","name":"A changed face and voice: body image after head and neck cancer treatment","route":"/technologies/rejuv-mind-visible-difference-head-and-neck/"},{"id":"rejuv-ayac-distinct-group","kind":"technology","name":"Adolescents and young adults: a group with its own cancers, its own gap and its own needs","route":"/technologies/rejuv-ayac-distinct-group/"},{"id":"rejuv-tx-what-to-ask-for","kind":"technology","name":"After a transplant or cell 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