Active monitoring

When you’re first diagnosed with chronic blood cancer, you may have no symptoms or few symptoms. If your condition is not causing you problems, you may not need treatment. Instead, you and your haematology team or GP work together to monitor your condition. This is called active monitoring. You may also hear people call it ‘active surveillance’ or ‘watch and wait’.

Active monitoring is used when your condition isn’t causing you major problems, and treatment might do you more harm than good. You might be on it when you’re first diagnosed with chronic blood cancer. You might also go on to active monitoring after a successful course of treatment.

Active monitoring is a safe approach if you have a chronic blood cancer that is under control. Treatment is still available if or when you need it.

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Your haematology team might recommend active monitoring if:

• You’re newly diagnosed with chronic blood cancer, and you have few or no symptoms
• You’ve had successful treatment, and your condition is stable

Your haematology team will discuss whether active monitoring is right for you. They’ll base this on your diagnosis and your medical history.

Conditions that may be managed with active monitoring

You may be on active monitoring if you have one of the following conditions:

• Chronic lymphocytic leukaemia (CLL)
• Chronic myelomonocytic leukaemia (CMML)
• Essential thrombocythaemia (ET)
• Hairy cell leukaemia (HCL)
• Large granular lymphocytic leukaemia (LGLL)
• Myelodysplastic syndromes (MDS)
• Myelodysplastic-myeloproliferative neoplasm (MDS/MPN)
• Myelofibrosis (MF) and pre-fibrotic MF
• Myeloproliferative neoplasm not otherwise specified (MPN NOS)
• Polycythaemia vera (PV)
• Prolymphocytic leukaemia (PLL)

It’s a common approach for people with slow-growing or stable blood cancer. About 22 in every 100 people with chronic blood cancer are on active monitoring.

You’re not alone. Around 27,000 people with blood cancer are on active monitoring in the UK.

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Active monitoring has good evidence to support it. It’s a safe way to look after people with slow-growing or stable blood cancers that are not causing problems.

Treatments for chronic blood cancers aim to keep your condition under control. They don’t cure them. Early treatment does not improve your outcomes and may make it harder to control your condition later.

Other benefits of active monitoring include:

Many people have a good quality of life while on active monitoring. Some people find it motivates them to do things or visit places sooner than they would have done.

Some aspects of active monitoring may be challenging, especially at first.

Coming to terms with having cancer but not having treatment immediately

When you’re first diagnosed, active monitoring may come as a surprise. It can be difficult to hear that you have blood cancer, but you’re not starting treatment. You might find it confusing or hard to explain to your friends or family. Especially when we’re used to being told cancer needs treatment as soon as possible. But for people with chronic blood cancer, there’s no benefit to starting treatment before you need it.

Coping with anxiety and uncertainty

Some people find the uncertainty of their condition hard to cope with. You might get anxious before your check-ups or while waiting for your test results. You might worry that your condition has progressed and needs treatment. But if this were the case, you’d usually have started to feel less well. So, you often have some warning.

You may also feel a conflict between living your life while monitoring your symptoms. It can be hard to forget about it. It’s best to note down when there’s been a change in your symptoms, rather than checking them every day.

Understanding the approach

If you don’t understand why you’re on active monitoring, you may find it even more difficult. You might find the emotional side of active monitoring the biggest challenge. If this is how you feel, talk to your haematology team or your GP.

If you’re finding it hard to cope while you are on active monitoring, our support services can also help.

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When you’re on active monitoring:

• You’ll have regular check-ups, either in person, by phone or by video. Your haematology team or GP will ask about your symptoms and how you’re doing.
• You’ll have regular blood tests. You may also have other tests depending on your condition.
• You’ll monitor your symptoms at home. This means you keep a record of new symptoms or any symptoms that are getting worse.

The timing of your check-ups may vary depending on what’s happening with your condition:

• You might have frequent check-ups in the first year after your diagnosis. Some people have them every few months or so.
• If your condition is stable, you may only need to see your haematology team or your GP once or twice a year.
• If your condition is progressing and might need treatment, you’ll have more frequent appointments.

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You have an important role to play in active monitoring. You are an expert on your body and how you usually feel. This makes you the best person to check your symptoms over time.

The key symptoms to monitor depend on your diagnosis. They often include:

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It’s best to make a note when you notice a change in your symptoms. You could use a notepad, diary, or an app on your phone or tablet to record your symptoms.

You should record:

• Symptoms that are new or changing, particularly if they’re getting worse
• How your symptoms are affecting your daily life

Your haematology team or GP will tell you which symptoms or changes:

• Should prompt you to seek urgent medical help
• Can wait until your next appointment

If you’re unsure how to check your symptoms or which ones are most important, contact them for advice.

If you become worried about your health at any time, contact your haematology team or GP. You don’t have to wait until your next appointment.

There’s no fixed time until you might need to start treatment. It depends on your case and your symptoms:

• Some people need treatment soon after diagnosis
• Some people need treatment at some point in the future
• Some people never need treatment

You and your doctor will check for signs and symptoms to decide when it’s time. You might start treatment if:

• Your symptoms are starting to get troublesome
• Symptoms like fatigue are affecting your daily life
• Your blood counts have got worse
• Your condition is progressing or becoming more aggressive
• Your condition is affecting other parts of your body or causing complications

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If you need to start treatment, your haematology team will explain your options. Different conditions have different treatments. Your team will explain what’s involved in treating your condition and how it might affect you. You can decide together what’s best for you. You may also want your family or carers to help you decide.

You might have several courses of treatment with periods of feeling well in between. You may have different treatment options next time you need it.

If you’d like to talk to someone who understands what you’re going through, contact our support services.

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If you have enough time before treatment starts, you might find it helpful to:

• Improve your general health and fitness, both physical and mental. This is called prehabilitation or ‘prehab’. Getting fit and healthy might improve your treatment outcomes.
• Plan for time off work or study, or reduce your workload, if needed.
• Tell friends and family if you want to.
• Get a support network in place, such as friends and family. Ask people you trust to give you emotional or practical support.
• Explore other avenues of support. Your haematology team or GP may be able to refer you for counselling.

The NHS has information and guidance on living well. This includes exercise, eating well, and many other ways to take care of yourself.

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Everyone is different. What helps one person may not help another, but general tips for keeping well include:

• Looking after your mental health, especially if you’re struggling. It can be hard to cope with the uncertainty of being on active monitoring.
• Managing fatigue by pacing yourself. Try to balance rest with activity and keep to a consistent sleep routine.
• Following a healthy and happy lifestyle. This includes eating a balanced and varied diet and exercising. But also includes doing things you enjoy.
• Keeping your body at a healthy weight. Ask your haematology team for advice if you’re struggling to eat well or have problems with weight loss or gain.
• Taking care to avoid infections, such as coughs, colds and food-borne illnesses.
• Talking to your employer or education provider if you need to. You can ask for reasonable adjustments for time off if you need it.
• Attending all your medical appointments. It’s important to keep up to date with recommended screening tests and vaccinations.
• Avoiding skin damage from the sun. Wear suitable clothing, seek the shade when the sun is hot, and use a sunscreen of at least SPF 30 with UVA protection.

The NHS has information and guidance on living well and tips for coping with anxiety. You may also find it helpful to access our support services.