Watch and wait for CLL

If you have no symptoms, or symptoms that aren’t affecting you greatly, your hospital team won’t recommend treatment. Instead, they will monitor the CLL and see how it develops. CLL can be treated and people can live with it for many years. But it’s incurable, so there is no advantage in treating it early if you are otherwise well – in fact it may be harmful to start treatment before it’s necessary. Treatment could make you unwell. It could also cause more resistant disease so it’s harder to treat when it comes back.

Thanks to research, treatments for CLL are improving all the time. So waiting may also give you the chance of a better treatment when the time comes.

Watch and wait involves regular check-ups which could be with your GP or at a hospital. You’ll have blood tests to check your blood cell counts and general health, and you may have a physical examination to check for swollen lymph nodes (glands).

You’re likely to have between two and four check-ups in the first year after your diagnosis, but if everything remains stable, you may need one to two check-ups a year.

If you get any new symptoms or your symptoms change, contact your hospital team or GP. It may help to keep a diary of your symptoms – this is useful for your doctor and may help you feel more in control of your health.

This depends on your individual circumstances, but many people stay on watch and wait for several years. Some people never need treatment.

Your hospital team will look for these things when considering if it’s time to start treatment:

• Rapidly increasing lymphocyte count – The number of lymphocytes in your blood is over 30 per 109/l and this doubles in under 12 months.
• Anaemia – You have a low number of red blood cells, which carry oxygen around your body.
• Low platelets – You have a low number of platelets, blood cells which help to stop you bleeding if you’re injured.
• Swollen lymph nodes – One or more of your lymph nodes (glands) are growing quickly, are over 10cm long or are causing symptoms.
• Swollen spleen – Your spleen (an organ that’s part of your immune system) is significantly enlarged or causing symptoms.
• "B" symptoms – You have a temperature over 38°C with no other signs of infection, drenching night sweats, or you’ve lost more than 10% of your body weight in the past 6 months without trying.
• Significant fatigue – You feel extreme tiredness which makes it difficult to carry on with everyday activities.

None of these things is an automatic trigger for starting treatment, but they will influence decisions about when to start treatment. Tell your hospital team or GP if you notice any new or worsening symptoms.