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Cancer registries are good at incidence and mortality and record almost nothing about late effects, so the scale of the problem is estimated from a handful of cohorts rather than counted. Europe cannot say how many survivors it has.
Almost everything this front knows about what treatment leaves behind comes from a small number of cohorts, most of them in childhood cancer, most of them North American, and most of them describing treatment given decades ago. The Childhood Cancer Survivor Study, the St Jude Lifetime Cohort, the British Childhood Cancer Survivor Study and the PanCare consortium carry a disproportionate share of the evidence on this entire front. They are excellent and they are not a surveillance system.
The consequences show up as honest refusals throughout this round's records. For Europe, the survivor-cohort record quotes a 2024 scoping review finding that information on prevalence is fragmented and inconsistent, and states that nobody knows accurately how many European survivors there are to plan services for. For adults, there is no cohort of comparable depth at all, and the frailty record says plainly that the childhood cohorts are mostly childhood cancer and mostly White, so they do not transfer to adults or to other populations. For newer treatments there is nothing: mortality after immunotherapy and cell therapy in children has no long-term cohort yet. For skin cancer after treatment, any figure for how many survivors develop one is an undercount because of how such cancers are recorded.
The mechanism of the gap is simple. Registries were built to measure whether a population's cancer incidence and mortality are changing, which is the question public health asked of them, and they do it well. Morbidity after treatment was never in their remit, has no reporting pathway, and appears years later in a different service that does not know the registry exists. Late effects are therefore invisible in the official statistics of every country, which is why they are chronically under-resourced: the number that would justify the budget has never been produced.
This is the bottleneck under several of the others. A screening programme cannot be designed without risk estimates; a service cannot be commissioned for a population of unknown size; a trial cannot be powered on a prevalence nobody has measured.
No randomised trial has shown that screening survivors for a second cancer reduces death from it. A registry-based randomised trial, which invites rather than enrols, is the only design that could answer this at an affordable cost.
A second cancer after radiotherapy can take forty years to appear. Checkpoint inhibitors and antibody-drug conjugates have been in first-line use for a few, so nobody can say anything about their late effects, and nobody is building the thing that could.
Risk-based follow-up guidelines key surveillance to cumulative dose and radiotherapy field. Survivors frequently cannot obtain either, so the guidelines are unusable even where someone is willing to follow them.
Shares The newest treatments have not existed long enough for their late effects to appear, PanCareSurFup and the European survivor cohorts, Late deaths after childhood cancer, what causes them, and the proof that gentler treatment worked, St Jude Lifetime Cohort Study (SJLIFE) and the tags rejuvenation, survivorship.
Shares Frailty and late effects in survivors, Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship, open-problem.
Shares Ask whether survivorship screening saves lives, using registry-based randomisation, Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship, open-problem.
Shares Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship, open-problem.
Shares Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship, open-problem.
Shares Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship, open-problem.
Shares Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship, open-problem.
Shares Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship, open-problem.