Active Surveillance

Overview

Active surveillance is a way of carefully watching a slow-growing health problem instead of treating it right away. It is not a treatment and it is not 'doing nothing'. You have regular check-ups, tests and scans so your doctor can see if anything is changing. If tests show the problem is starting to grow or look more serious, you and your doctor can then decide to start treatment. The aim is to avoid the side effects of treatment you may never need, while keeping a close eye on things.

Yes. Active surveillance is now a common and accepted option, especially for some slow-growing prostate cancers. It is also used for a few other slow-growing conditions.

It is most often offered to adults with a slow-growing, low-risk condition, particularly older adults or people with other health problems where treatment could cause more harm than good. It is rarely used in children, but it can sometimes be used for certain childhood conditions, always with specialist input.

Symptoms

Common symptoms

• Active surveillance itself does not cause symptoms. Any symptoms come from the condition being watched.
• Many people on active surveillance feel completely well and have no symptoms at all.
• Symptoms to report to your team include new pain, a new lump or swelling, changes when you pass urine or open your bowels, unexplained weight loss, or unusual tiredness.

Symptoms in children

• Active surveillance is uncommon in children. If it is used, it is managed by a specialist children's team.
• Report any new symptoms, changes in feeding or growth, or changes in behaviour to your child's doctor.
• Ask your child's team for a clear written plan so you know exactly when the next check is due and who to contact.

Symptoms in older adults

• Older adults are more likely to be offered active surveillance, because slow-growing conditions may never cause problems in their lifetime.
• It is important to review other health conditions and medicines together with your doctor, so the plan stays right for you.
• Keep a simple written record of appointments and results, and bring someone with you if that helps you remember what was said.

Causes

Main causes

• Active surveillance is a choice, not an illness. It is offered when a condition is expected to grow slowly and is unlikely to cause harm in the near future.
• It is also chosen when treatment could cause side effects that would affect your quality of life more than the condition itself.
• Personal preference matters. Some people prefer to avoid or delay treatment and accept regular monitoring instead.

Risk factors

• Features on tests that suggest a higher chance of the condition growing, such as a higher grade or faster growth rate
• A strong family history of the condition
• Younger age, which means more years of follow-up are needed
• Other serious health problems that make treatment riskier
• Difficulty attending regular appointments or tests

When to see a doctor

See a doctor urgently if:

• New or worsening blood in your urine, stools or semen
• Severe pain, or pain that is stopping you sleeping or eating
• You cannot pass urine, or you feel very unwell with a fever
• Any new lump or swelling
• Fever or feeling generally unwell after a biopsy or procedure

Book a routine appointment if:

• You are anxious about your plan and want to talk it through
• You want to know your latest test results or what they mean
• You are thinking about changing to active treatment
• You have side effects or worries from repeated tests and biopsies
• You are finding it hard to cope emotionally with waiting and watching

Diagnosis

Active surveillance is a plan, not a diagnosis. Your doctor decides whether it suits you by looking at your test results, your overall health, your age and what matters to you. You should be given clear information about the benefits, the risks and what will happen if things change, and time to ask questions before deciding.

Tests that may be done

• A review of your medical history, medicines and general health
• Blood tests, including tests that show how an organ is working or a marker linked to your condition
• Imaging such as an MRI scan, ultrasound or CT scan
• A biopsy, where a small sample of tissue is taken to look at under a microscope
• Regular repeat tests over time so changes can be spotted early

What to expect at your appointment

You will usually be given a written schedule of check-ups, often every three to twelve months at first. Each visit may include a blood test, a physical check and sometimes a scan. Repeat biopsies may be offered at set times or only if tests change. Your team should explain what results would trigger a discussion about treatment, so you know what is being watched for.

Treatment

The 'treatment' in active surveillance is careful, planned monitoring. No active treatment is started unless your tests show the condition is changing, or unless you decide you would rather be treated. You remain in charge of that decision.

Self-care at home

• Attend your check-ups and tests on time, and rebook quickly if you miss one
• Keep your own simple record of results and dates so you can track changes
• Write down questions before appointments and bring someone with you if helpful
• Report new symptoms to your team rather than waiting for the next appointment
• Look after your general health, since this affects how well you cope with any future treatment

Medical treatments

No active treatment is given at the start. If your tests show the condition is growing or becoming higher risk, your team will discuss the options with you. Depending on the condition, these may include surgery, radiotherapy, treatments that use heat or cold to destroy tissue, medicines that affect hormones or the immune system, or other drug treatments. Your doctor will explain the benefits and side effects of each option so you can decide together. Never start or stop any medicine without speaking to your healthcare provider.

When is surgery considered?

Surgery may be discussed if tests show the condition is growing, has become higher risk, or is causing symptoms. It may also be your choice if you would prefer to treat it rather than keep watching. Your team will explain what the operation involves, the recovery time and possible side effects before you decide.

Living with this condition

Most people on active surveillance live normal lives and carry on with work, hobbies and family life. The main difference is a calendar of appointments and tests. Having a clear routine and knowing your next date can make the whole thing feel more manageable.

Lifestyle tips

• Stay active with regular movement you enjoy, such as walking, swimming or gardening
• Eat a varied, balanced diet with plenty of vegetables, fruit and whole grains
• Keep to a healthy weight and limit alcohol
• If you smoke, ask your doctor for help to stop, as this improves outcomes for many conditions
• Get enough sleep and make time to relax
• Keep up to date with other health checks and vaccinations your doctor advises

Diet and exercise

There is no special diet that replaces active surveillance, but a balanced diet and regular activity help you feel better, support your general health and may help you recover faster if treatment is needed later. Aim for movement most days and build up gradually. Ask your doctor or pharmacist if you are unsure what is safe for you.

Mental health and emotional wellbeing

It is very common to feel anxious before check-ups or to worry that 'nothing is being done'. Some people find the waiting harder than treatment would be. These feelings are normal and worth mentioning. Talking to your team, a counsellor or a support group can help a lot. If low mood or worry is affecting your sleep, appetite or daily life, tell your doctor — support is available, and you do not have to cope alone.

Prevention

Active surveillance is a treatment plan, so it is not something you prevent. What you can do is make the plan work well: attend your tests, report changes early, and look after your general health. If you are offered active surveillance, ask what signs would mean the plan needs to change.

Vaccines

There is no vaccine for active surveillance. Keep up with routine vaccinations your doctor recommends, as preventing other illnesses helps you stay well overall.

Screening programmes

Screening depends on the condition. For prostate cancer, for example, there is no national screening programme in the UK; instead, you can discuss the pros and cons of a PSA blood test with your GP. Ask your doctor whether any screening or monitoring applies to you.

Complications

If left untreated

• The condition may grow or become higher risk during the monitoring period, which is exactly what the check-ups are designed to catch
• In a small number of people, the condition may progress before treatment starts, so keeping to the schedule matters
• Repeat biopsies can cause temporary discomfort, bleeding or infection
• Ongoing worry and uncertainty can affect sleep, mood and relationships

Long-term outlook

For many people, active surveillance works very well. Studies of slow-growing prostate cancer, for example, show that many people on active surveillance live just as long as those treated straight away, while avoiding treatment side effects. Your team will keep checking so that if anything changes, treatment can start promptly. Most people find a rhythm that lets them get on with life between appointments.

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