£
Donate

We're here for you if you want to talk?

0808 2080 888

[email protected]

Watch and wait

We're here for you if you want to talk?

0808 2080 888

[email protected]

Understanding watch and wait

Some people with blood cancer don't need treatment straight away – and some never need it. 'Watch and wait' is a way of monitoring these people with regular check-ups and blood tests. You may also hear it called ‘active surveillance’ or ‘watchful waiting’.

Why am I on watch and wait?

For some slow-growing (chronic) blood cancers, there’s no evidence that being treated early on, when you have no symptoms, has any benefits. Instead, doctors recommend saving treatment for later, when it will have the best impact. In the meantime, you’ll be monitored with regular check-ups and blood tests. This is known as ‘watch and wait’.

Who can be on watch and wait?

Watch and wait is usually only an option for people with few or no worrying symptoms, whose quality of life and prognosis won’t be affected by delaying treatment. It’s only recommended for people with blood cancers that are stable and slow-growing.

These include, but aren’t limited to:

  • chronic lymphocytic leukaemia (CLL)
  • follicular lymphoma
  • asymptomatic (or 'smouldering') myeloma
  • myelodysplastic syndromes (MDS)
  • essential thrombocythemia (ET)
  • myelofibrosis

About 27,000 people in the UK are currently on watch and wait (around 13% of everyone living with blood cancer). Each year, around 5,000 people are put on watch and wait.

Find out more about a specific type of blood cancer.

Is it safe to delay treatment?

Yes – research shows that, for people who meet the criteria above, it’s safe to watch and wait.

The decision about whether to watch and wait before starting treatment will be based on how you’re doing and not on the cost to the NHS, or any other reason.

Kate was diagnosed with a form of low-grade non-Hodgkin’s lymphoma (low-grade NHL) in September 2010, and has been on watch and wait ever since.

Kate's story

Coping with the emotional impact of watch and wait

Kate's story

Your appointments explained

It’s normal to feel anxious in the months, weeks or days leading up to your appointments, but knowing what to expect from these check-ups can help. If you feel upset or worried, there’s plenty of support available to you and those close to you.

Where will I go for my appointments?

Some people will go to a clinic or hospital to see a doctor specialising in blood cancer (a consultant haematologist) for their appointments, while others will visit their local GP surgery. The specialist you see when you’re diagnosed will explain whether you’ll continue to see them or your GP.

What will happen at my appointments and how often will they be?

At each appointment, your doctor will check to see if you’ve developed any new symptoms and run some tests.

The length of time between your check-ups will depend on the type of blood cancer you have and how it’s affecting you. If you develop new symptoms or your blood counts change, your doctor may decide to shorten the length of time between your appointments or recommend that you start treatment.

You can use the information below as a rough guide, but you should speak to your doctor for more detail.

People on watch and wait for CLL are typically seen at least twice in the first year. After this, if your condition remains stable, your consultant may decide to reduce your visits to once a year.

Your doctor will check for new symptoms, such as swellings on your lymph nodes, liver or spleen. They’ll also run a full blood count, test your kidney and liver function and may carry out other routine blood tests.

Find out more about tests for blood cancer.

People on watch and wait for follicular lymphoma are typically seen every three to four months.

Your check-ups will be very similar to those for CLL (see above). Your doctor may also want to perform or repeat a CT scan of your chest, stomach and pelvis within the first two to three years that you’re on watch and wait, especially if you have new symptoms. After that, if your condition remains stable, you’ll have these scans less often.

Find out more about tests for blood cancer.

People on watch and wait for asymptomatic myeloma are usually seen every three months.

Your doctor will check for signs or symptoms that suggest your condition might be progressing or developing into myeloma. This usually involves tests to check your full blood count, measure the amount of calcium in your blood, detect whether there are any paraproteins or free light chains in your blood, and to see how well your kidneys are working.

Find out more about tests for blood cancer.

Some people with MDS only need monitoring once a year, while others visit their doctor every few weeks. Your doctor will base their recommendation on your symptoms and blood counts.

Your doctor will run a full blood count and check for new symptoms, such as shortness of breath (a symptom of a low red blood cell count) or persistent infections (often the result of a low neutrophil count).

Find out more about tests for blood cancer.

People on watch and wait for ET or myelofibrosis are typically seen every three to six months.

Your doctor will check your full blood count and check for new symptoms, such as a swollen spleen.

Find out more about tests for blood cancer.

Getting the most out of your appointments

If possible, it’s a good idea to bring someone with you, so they can write things down while you chat to the doctor or ask questions you might not think of. Don’t worry if there isn’t anyone who can come with you, as there may be a nurse who can sit with you while you see the doctor.

You may also find it helpful to bring a notebook with you so you can jot down notes. Between your appointments, you could use this notebook to write down any new symptoms you experience, medication you’re taking, or questions you have, so you have this information to hand when you see your doctor.

If you'd like somewhere to record your blood counts after your appointments, you can use our blood count template.

Rob and family having fun cooking

Living well

Practical tips and real stories to help you with everyday life

Living well with or after blood cancer