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The largest study of what happens to children after cancer is cured. Following tens of thousands of survivors for decades, it showed that heart damage, second cancers and other late effects were common after older treatments, and that gentler modern protocols have already halved late deaths.
NCI-funded cohort coordinated at St. Jude since 1994, covering leukaemia, lymphoma, CNS tumours, Wilms tumour, neuroblastoma, soft-tissue sarcoma and bone tumours; the expansion cohort (diagnoses 1987-1999) brought the total to more than 35,000 survivors and around 5,000 siblings. Its papers quantified the late-effects burden: by age 50 most survivors have a severe or life-threatening chronic condition, driven by anthracyclines, chest radiotherapy, cranial radiotherapy and alkylators. Armstrong et al. (NEJM 2016) analysed 34,033 survivors: of 3,958 deaths, 1,618 (41%) were health-related (746 subsequent neoplasms, 241 cardiac, 137 pulmonary). Fifteen-year all-cause mortality fell from 12.4% for diagnoses in the early 1970s to 6.0% in the 1990s, and health-related mortality from 3.5% to 2.1%, attributable to reduced cranial radiotherapy in ALL, reduced abdominal radiotherapy in Wilms tumour and less anthracycline exposure. CCSS data underpin the COG Long-Term Follow-Up Guidelines, the dexrazoxane and cardiac-screening evidence, and the case for treatment de-escalation in trials such as ACNS0331 and AREN0533. Public data are available through the CCSS website, and the St. Jude Lifetime Cohort (SJLIFE) adds clinically assessed outcomes.
Numbers are from the trial as recorded here; see the source links in the table below. This is orientation, not medical advice: ask your team how closely the trial population matches you.
50,000 enrolled.
| Endpoint | Arm | n | Value | HR (95% CI) | p | Source |
|---|---|---|---|---|---|---|
| 15-year cumulative all-cause mortality by treatment eraprimary | Diagnosed early 1970s | - | 12.4% | - | <0.001 for trend | link |
| Diagnosed 1990s | - | 6% | ||||
| 15-year health-related mortality by treatment era | Diagnosed early 1970s | - | 3.5% | - | <0.001 for trend | link |
| Diagnosed 1990s | - | 2.1% |
Shares Cure is not enough: when late effects stopped being an afterthought, PanCareSurFup and the European survivor cohorts, Growth and final height after treatment in childhood, and growth hormone, Registries count diagnoses and deaths, and not what treatment left behind and the tags paediatric, survivorship.
Shares St Jude Lifetime Cohort Study (SJLIFE), The heart after anthracyclines and chest radiotherapy in childhood, The Children's Oncology Group Long-Term Follow-Up Guidelines, How much illness childhood cancer survivors carry, and at what age and the tags paediatric, survivorship.
Shares British Childhood Cancer Survivor Study (BCCSS), The handover from children's to adult services, where follow-up falls away, The Children's Oncology Group Long-Term Follow-Up Guidelines, Wilms tumour (nephroblastoma) and the tags paediatric, survivorship.
Shares Growth and final height after treatment in childhood, and growth hormone, St Jude Lifetime Cohort Study (SJLIFE), Fertility in boys and young men treated for cancer, including testicular tissue banking, The Children's Oncology Group Long-Term Follow-Up Guidelines and the tags paediatric, survivorship.
Shares St Jude Lifetime Cohort Study (SJLIFE), Memory, attention and learning after treatment of a childhood cancer, The Children's Oncology Group Long-Term Follow-Up Guidelines, How much illness childhood cancer survivors carry, and at what age and the tags paediatric, survivorship.
Shares PanCareSurFup and the European survivor cohorts, St Jude Lifetime Cohort Study (SJLIFE), The Children's Oncology Group Long-Term Follow-Up Guidelines, How much illness childhood cancer survivors carry, and at what age and the tags paediatric, survivorship.
Shares Education, work and the years that were interrupted, How much illness childhood cancer survivors carry, and at what age, Ewing sarcoma, Osteosarcoma and the tags paediatric, survivorship.
Shares Growth and final height after treatment in childhood, and growth hormone, St Jude Lifetime Cohort Study (SJLIFE), The Children's Oncology Group Long-Term Follow-Up Guidelines, How much illness childhood cancer survivors carry, and at what age and the tags paediatric, survivorship.