OnCo
bottlenecksBottleneck

Survivorship and late effects are neglected

Tens of millions of people live after cancer with heart damage, infertility, second cancers and fear, and few services.

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.

moderateaccess delivery30 ideas to fix it
How big the problem is
More than 18 million
People living in the US with a history of cancer (2022 estimate)
62.3% and 27.5%
Adult survivors of childhood cancer with at least one chronic health condition, and with a severe or life-threatening condition (CCSS)
Root 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.
What is already being tried
  • 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.
What breaking it looks like
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.

Ideas to fix it

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early clinicalresearchmedium cost
A dose-finding trial for exercise after cancer

CHALLENGE proved exercise works in colon cancer but not how much is needed. A trial comparing doses, as we would for a drug, would tell health systems what to fund.

early clinicaldatamedium cost
A lifelong late-effects registry linked to every treatment for adult survivors

Children treated for cancer are followed for decades in a study that has changed how they are treated. Adults have nothing similar. Build it.

early clinicaldatamedium cost
A machine-readable treatment summary handed to every patient and readable by any hospital

Patients moving between hospitals often carry paper folders or nothing. A standard electronic summary of diagnosis, treatments, and doses that any system can read would stop repeated tests and dangerous gaps.

early clinicaldatamedium cost
A national late-effects registry linking treatment exposures to outcomes decades later

We know surprisingly little about what happens to cancer survivors twenty years on. Linking their treatment records to later health records would show which treatments cause which problems and who needs watching.

being tested at scaleclinicmedium cost
A risk-stratified cardio-oncology pathway for everyone receiving heart-toxic cancer therapy

Some chemotherapy and antibody drugs damage the heart. Checking heart function before and during treatment and starting protective drugs early for those at risk could prevent much of that damage.

speculativeresearchmedium cost
A survivor biobank to find who will develop late effects before they do

Two people can have identical treatment and only one develops heart failure or a second cancer years later. Collecting blood and genetic data from survivors could reveal who is at risk and who can be reassured.

early clinicalpatientssmall cost
A survivorship passport app for adolescent and young adult survivors

Young survivors will live sixty more years and will change doctors many times. A phone app holding their treatment history, risks and screening reminders would travel with them for life.

speculativepayerlarge cost
A survivorship research endowment funded by a levy on curative therapy prices

Tens of millions of people live after cancer with heart damage, infertility and second cancers. A tiny levy on the price of curative treatments would build a permanent fund to study and treat late effects.

early clinicalresearchmedium cost
Biomarker-guided cardioprotection for everyone on cardiotoxic cancer therapy

Anthracyclines, HER2 drugs and some newer agents can damage the heart. Monitor with blood tests and scans and start cheap heart-protective drugs early in those at risk.

early clinicalclinicsmall cost
Cardiometabolic screening and treatment for survivors on long-term hormone therapy

Hormone-blocking treatments for prostate and breast cancer, taken for years, raise the risk of diabetes, heart disease and bone fractures. Survivors on these drugs should get the same preventive care as diabetics.

preclinical evidenceresearchmedium cost
Clear the zombie cells left behind by chemotherapy and radiotherapy

Treatment leaves behind damaged cells that stop dividing but do not die, and they release signals that help surviving cancer cells regrow. Removing them could reduce relapse.

being tested at scaleclinicsmall cost
Default fertility preservation referral for every patient under 40 before treatment

Many young patients are never told that chemotherapy may end their fertility, or are told too late to do anything. An automatic referral, triggered when treatment is ordered, would make the conversation routine.

being tested at scalepayermedium cost
Fertility preservation offered and funded by default before gonadotoxic treatment

Everyone of reproductive age about to have treatment that can cause infertility is offered egg, sperm or tissue freezing, paid for, before treatment starts.

early clinicalresearchsmall cost
Follow every trial participant for 30 years through registry linkage

Trials stop following patients after a few years, so late side effects and late relapses are missed. Link trial participants to national records so follow-up continues automatically for decades.

early clinicalclinicsmall cost
Formal caregiver assessment and training written into every treatment plan

The person looking after a cancer patient at home is assessed, trained (medicines, symptoms, when to call) and supported as part of the plan, not left to work it out.

being tested at scaleclinicmedium cost
Four weeks of training and nutrition before major cancer surgery, as standard

Getting fitter and better nourished before an operation reduces complications and speeds recovery. It is cheap, but only a few hospitals do it.

speculativeindustrylarge cost
GLP-1 receptor agonists as adjuvant weight-loss therapy in HR-positive breast cancer

Coaching-based weight loss did not clearly cut breast cancer recurrence in BWEL, perhaps because the weight loss was too small. Drugs that produce three times as much weight loss could settle whether weight itself matters.

early clinicalresearchmedium cost
Measure and treat chemo brain with objective digital cognitive testing

Many people report thinking and memory problems after cancer treatment. Measure it properly with short phone-based tests and run trials of treatments.

being tested at scaleclinicsmall cost
Nurse-led follow-up clinics for survivors, freeing oncologists for active treatment

Most follow-up visits after successful treatment are routine. Nurse practitioners can run them well, giving survivors more time and oncologists more capacity for new patients.

early clinicalpayermedium cost
Pay for supervised exercise the way we pay for drugs

A large trial showed a structured exercise programme improved survival after bowel cancer. Almost no health system pays for it, so almost no patient gets it.

being tested at scaleclinicsmall cost
Prospective arm-volume surveillance to catch and reverse lymphoedema early

Arm swelling after breast cancer surgery is common and lifelong once established, but if caught early with simple measurements and treated with a sleeve, most cases can be prevented from becoming permanent.

being tested at scalepolicysmall cost
Risk-stratified follow-up: low-risk survivors to primary care with fast re-entry

Not every survivor needs to see an oncologist every six months for years. Sort people by recurrence risk, send low-risk survivors back to their family doctor with a clear plan, and guarantee rapid return if something changes.

early clinicalpolicymedium cost
Risk-stratified lifelong care for tens of millions of survivors, automated and shared with primary care

Cancer survivors are a huge and growing population with specific long-term risks. Give each a plan matched to their risk, run automatically and shared with their family doctor.

early clinicalclinicsmall cost
Sexual health assessed and treated as a standard toxicity domain

Cancer treatment often damages sexual function and intimacy, and almost nobody asks. Make it a routine question with a clinic to refer to.

early clinicaldatasmall cost
Survivorship care plans generated automatically from the treatment record

Every patient finishing treatment should get a clear document listing what they had, what to watch for, and when to be checked. Software can write it from the record so it actually happens.

early clinicalclinicmedium cost
Tailored screening for second cancers in survivors with known high-risk exposures

Survivors who had chest radiotherapy as young women, or certain chemotherapies, have much higher risks of specific second cancers. They should be screened like people with inherited risk, and today most are not.

preclinical evidenceclinicmedium cost
Treat insomnia in survivors and measure whether the cancer notices

Insomnia therapy works well for cancer survivors and is barely offered. A trial that fixes sleep and then follows recurrence would test whether restoring the body clock changes the disease as well as the symptom.

early clinicalresearchmedium cost
Trials of structured cognitive rehabilitation for cancer-related cognitive impairment

Many people report foggy thinking and memory problems for years after chemotherapy, and almost nothing is offered for it. Structured brain-training and coaching programmes deserve proper trials.

speculativeclinicmedium cost
Use residual disease tests to decide who needs ten years of hormone therapy

Many women take hormone-blocking tablets for a decade with real side-effects. A sensitive blood test could show who can safely stop at five years.

early clinicalpayermedium cost
Vocational rehabilitation integrated into cancer care so survivors can return to work

Many survivors of working age lose their jobs or income after treatment, though they could work with the right support. Job-focused rehabilitation should be part of cancer care, as it is for stroke.

What relieves it today

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Key papers

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rctNew England Journal of Medicine 2025changed practice
CHALLENGE: a structured exercise programme after chemotherapy improves survival in colon cancer

For colon cancer survivors, a prescribed, supported exercise programme is now an evidence-based treatment with a survival benefit comparable to many drugs. Health systems will need to fund exercise consultants as they fund chemotherapy. The trial does not tell us whether unsupervised advice achieves the same.

rctNew England Journal of Medicine 2025changed practice
CheckMate 067 at ten years: half of melanoma patients treated with nivolumab plus ipilimumab were alive a decade later

Before 2011 median survival in metastatic melanoma was under a year; this trial shows that roughly half of patients treated with combination checkpoint blockade are now long-term survivors, effectively cured. It anchors first-line treatment of advanced melanoma and sets the benchmark for every new regimen, including nivolumab-relatlimab. The combination's toxicity means nivolumab alone or newer doublets remain reasonable for some patients.

rctNew England Journal of Medicine 2025changed practice
Children's Oncology Group AALL1731: blinatumomab added to chemotherapy for children with standard-risk B-cell ALL

AALL1731 brings immunotherapy into the front-line treatment of the commonest childhood cancer, in the group of children where most relapses were occurring despite good initial risk. Blinatumomab was approved for this use in 2024 and paediatric protocols worldwide are being amended. Whether it can allow less chemotherapy, and its effect on very low-risk children, are the next questions.

rctNew England Journal of Medicine 2024changed practice
SWOG S1826: nivolumab plus AVD chemotherapy versus brentuximab-AVD for advanced Hodgkin lymphoma in adolescents and adults

S1826 moved checkpoint blockade into first-line Hodgkin lymphoma and made N-AVD a preferred regimen for advanced disease in patients from adolescence to older age, while removing radiotherapy for most. It also showed the value of a single trial spanning paediatric and adult groups. Longer follow-up is needed for overall survival and late immune effects in young patients.

rctNew England Journal of Medicine 2018changed practice
ECHELON-1: brentuximab vedotin replacing bleomycin in first-line chemotherapy for advanced Hodgkin lymphoma

ECHELON-1 made a targeted antibody-drug conjugate part of first-line Hodgkin therapy and eventually showed that this saves lives, not just relapses. It set the reference arm against which nivolumab-AVD (SWOG S1826) and BrECADD (HD21) were later compared. Neuropathy is the main price and needs proactive dose modification.

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A dose-finding trial for exercise after cancerA lifelong late-effects registry linked to every treatment for adult survivorsA machine-readable treatment summary handed to every patient and readable by any hospitalA national late-effects registry linking treatment exposures to outcomes decades laterA risk-stratified cardio-oncology pathway for everyone receiving heart-toxic cancer therapyA survivor biobank to find who will develop late effects before they doA survivorship passport app for adolescent and young adult survivorsA survivorship research endowment funded by a levy on curative therapy pricesBiomarker-guided cardioprotection for everyone on cardiotoxic cancer therapyCardiometabolic screening and treatment for survivors on long-term hormone therapyClear the zombie cells left behind by chemotherapy and radiotherapyDefault fertility preservation referral for every patient under 40 before treatmentFertility preservation offered and funded by default before gonadotoxic treatmentFollow every trial participant for 30 years through registry linkageFormal caregiver assessment and training written into every treatment planFour weeks of training and nutrition before major cancer surgery, as standardGLP-1 receptor agonists as adjuvant weight-loss therapy in HR-positive breast cancerMeasure and treat chemo brain with objective digital cognitive testingNurse-led follow-up clinics for survivors, freeing oncologists for active treatmentPay for supervised exercise the way we pay for drugsProspective arm-volume surveillance to catch and reverse lymphoedema earlyRisk-stratified follow-up: low-risk survivors to primary care with fast re-entryRisk-stratified lifelong care for tens of millions of survivors, automated and shared with primary careSexual health assessed and treated as a standard toxicity domainStructured exercise prescribed like a drug in all curative-intent cancer careSurvivorship care plans generated automatically from the treatment recordTailored screening for second cancers in survivors with known high-risk exposuresTreat insomnia in survivors and measure whether the cancer noticesTrials of structured cognitive rehabilitation for cancer-related cognitive impairmentUse residual disease tests to decide who needs ten years of hormone therapyVocational rehabilitation integrated into cancer care so survivors can return to work

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