Active monitoring explained

For some types of blood cancer there’s no evidence that early treatment, when you have no symptoms, improves outcomes. Instead, doctors recommend saving treatment for later, when it will have the best impact. You’ll also avoid potential side effects of treatment for as long as possible.

In the meantime, you’ll be monitored with regular check-ups and blood tests. This is often called ‘watch and wait’, but many doctors now use the terms ‘active monitoring’ or ‘active surveillance’.

Active monitoring is sometimes an option if you have a type of slow-growing (chronic) blood cancer, and you have few or no worrying symptoms. Your doctor will only recommend it if delaying treatment won’t affect your quality of life and prognosis.

These are some of the types of blood cancer where doctors sometimes recommend active monitoring:

• chronic lymphocytic leukaemia (CLL)
• follicular lymphoma
• hairy cell leukaemia
• large granular lymphocytic leukaemia
• MALT lymphoma
• mantle cell lymphoma
• myelodysplastic syndromes (MDS)
• myelofibrosis
• smouldering (or asymptomatic) myeloma
• Waldenstrom macroglobulinaemia

About 27,000 people in the UK are on active monitoring right now (around 13% of everyone living with blood cancer). Each year, around 5,000 people go on active monitoring.

Find out more about a specific type of blood cancer.

Yes – research shows that for many types of slow-growing blood cancer, saving treatment for later is safe.

The decision about whether to delay treatment will be based on the evidence for your type of blood cancer, and what’s right for you. It is not based on the cost to the NHS.

The length of time people spend on active monitoring varies, as blood cancer can progress at different speeds for different people. Your healthcare team will be able to give you a clearer idea of when you might need to start treatment.

It’s important to know that lots of people have a good quality of life on active monitoring for years before needing treatment – and some never need it.

You might find it helpful to print out this list of questions and take it with you to your next appointment. You can ask your doctor to write down the answers, so you have them to hand whenever you need them.

• Why is active monitoring recommended for me?
• What are my other treatment options at this stage?
• What tests will I need, and how often will I have them?
• Where will I need to come for my appointments?
• What symptoms should I look out for?
• Who should I contact if I feel unwell or develop new symptoms?
• Should I take any precautions while I’m on active monitoring (For example: Do I need the flu jab? Should I avoid the shingles vaccine or other live vaccines? Could my condition affect any unrelated routine operations or procedures I might need)?
• How will I know if I need to start treatment and what will this involve?
• What is the best outcome I can hope for?

If you're unhappy with any aspect of your care, speak to someone in your healthcare team. Or, ask your hospital or treatment centre who is best to speak to outside of the team. Sometimes, asking your doctor or another member of the team to explain your diagnosis again can clear up any concerns you may have. You can also ask for a second opinion from another doctor at any stage.

There are services that provide support and information for people who have concerns about their healthcare. In England this is the Patient Advice and Liaison Service (PALS), in Scotland it’s the Patient Advice and Support Service (PASS), and in Wales it’s the Community Health Councils (CHCs). In Northern Ireland, you need to ask your hospital for a copy of their complaints procedure.

It can be difficult to explain active monitoring to others. Show them these pages, or, if they don't use the internet, they can call our Support line and we will print off the information and send it out to them.