We're here for you if you want to talk

0808 2080 888

[email protected]

Active monitoring (watch and wait)

We're here for you if you want to talk

0808 2080 888

[email protected]

Active monitoring explained

Some people with blood cancer don't need treatment straight away – and some never need it. If you don’t need treatment, you will be monitored with regular check-ups and blood tests. You may hear this called “active monitoring”, “watch and wait”, “active surveillance” or “watchful waiting”.

Why am I on active monitoring?

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’.

Who can be on active monitoring?

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.

Is it safe to delay treatment?

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.

When will I need to start treatment?

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.

If you've recently been diagnosed and put on active monitoring

Sign up to our weekly support email for people recently diagnosed.

It gives you clear and simple information, practical tips and advice from others with blood cancer, to help during the first few weeks and months after diagnosis.

Photo of a hand holding a smart phone, looking at an email that talks about blood cancer information and support.

Questions to ask your doctor

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?

"I didn’t ask any questions – partly because I didn’t know what to ask and partly because my mind went blank."

Erica, diagnosed with CLL in 2003.

Read more about Erica's experience on active monitoring.

If you have worries about your care

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.

Information to give others

It can be difficult to explain active monitoring to others. That’s why we have a series of fact sheets that you can give to your family, friends, employer and GP. We use the term watch and wait in these factsheets, but it means the same thing as active monitoring.

Telling your family and friends

If you decide to tell your family and friends about your diagnosis, you may want to explain why you’re not being treated straight away. If you struggle with this, you can give them our fact sheet, Watch and wait explained: for family and friends

Telling your employer

If you work, telling your line manager or HR team about your diagnosis can help you get the support you need. If you’re not sure how to explain watch and wait to your employer, you can give them our fact sheet, Watch and wait explained: for employers

Telling your GP

If you’d like to give your GP some information about watch and wait, you can pass on our fact sheet, Watch and wait explained: for GPs

Living well

Practical tips and real stories to help you with everyday life

Living well with or after blood cancer

We're here for you if you want to talk

0808 2080 888

[email protected]