Survivorship and late effects are neglected

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.

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

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.

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.

Every attempt to drop radiotherapy from early Hodgkin lymphoma on the strength of a clear scan has cost people their remission. Changing the chemotherapy as well is the next attempt.

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.

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.

Adolescent and young adult survivors live longest with late effects and are the group most often lost to follow-up as they change doctors over decades. A phone app version of Europe's Survivorship Passport, holding treatment history, exposure-based risk explanations and screening reminders, would travel with them for life.

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.

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.

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.

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.

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.

Fewer than half of patients starting treatment that can damage fertility have a documented fertility discussion or referral, with worse rates for women, minorities and patients outside academic centres. An order-set trigger that refers every patient under 40 to reproductive medicine unless they actively decline would make the conversation routine and timely.

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

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.

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.

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

A three-year supervised exercise programme after chemotherapy cut recurrence and death by roughly a third in 889 patients, an effect the size of adjuvant chemotherapy. No health system has a funding line for it.

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.

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

Everything known about the long-term cost of curing lymphoma comes from people treated decades ago with much larger radiation fields. Nobody knows the forty-year risks of what is given today.

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.

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.

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.

When Black and white men in the United States are given the same treatment, the gap in dying of prostate cancer largely closes. The gap in dying of everything else does not. Cancer services measure the first and not the second, which means the surviving disparity is invisible to the people best placed to act on it.

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.

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.

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

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.

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.

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.

A substantial minority of survivors report foggy thinking and memory problems for years after chemotherapy, limiting work and daily life, and no funded service exists for it. Small trials of computerised cognitive training, strategy training and exercise show benefit; a definitive multi-arm trial with a functional endpoint would establish or refute a treatable condition.

Extended hormone therapy after breast cancer prevents late recurrence in a minority of women while imposing joint pain, bone loss and sexual side-effects on everyone for a decade. A sensitive residual disease blood test at year five, repeated annually, could show who can safely stop.

Cancer survivors are substantially more likely to be unemployed than the general population, though with support they could often work. Vocational rehabilitation covering fatigue management, cognitive strategies, employer liaison and phased return has moderate trial evidence, mostly from Europe, and should be part of cancer care from diagnosis with a named coordinator, as it is for stroke.

Exercise after colon cancer has a hazard ratio a drug would be licensed on. It is in the guidelines and in almost no budgets, because it is a staffed service rather than a product.