Watch and wait

Most people diagnosed with chronic lymphocytic leukaemia (CLL), and some people with myelodysplastic syndrome (MDS), do not need immediate treatment. Those who feel well, have no or only mild symptoms, and whose blood cell counts are only slightly abnormal, will be regularly monitored by their specialist or by their GP for months or years until the illness changes and treatment is considered necessary. This is called ‘active surveillance’, ‘watchful waiting’ or ‘watch and wait’. Research has shown that people who are monitored in this way do just as well as those given chemotherapy at once, and they are spared the unwanted effects of treatment. Some even avoid treatment altogether.

People we spoke to reacted in very different ways to being put on watch and wait. Although many had been reassured to learn that their condition was not immediately life-threatening, some couldn't understand or accept that their 'incurable illness' didn't need immediate treatment. This went against all their previous experiences of cancer in other people. It was also hard to explain to friends and family who often didn’t understand why they weren’t having treatment.

Watching and waiting could therefore be unsettling and worrying. One man described it as ‘slightly reassuring but odd’ - like waiting at an airport for a delayed flight. Janet considered it a form of torture and Jane dubbed it ‘whine and worry’. Len found that although his consultant repeatedly said to him, ‘Don’t worry, just carry on’, this was not easy to do. Even when people understood the rationale for watching and waiting they still found the lack of treatment frustrating. Deirdre had initially wanted some treatment but after she had digested what she had been told she realised that the longer she went without treatment the better. Others were glad that they didn’t need treatment.

The illness often had no outward sign: people looked and felt the same but knew they had an incurable cancer. Some said this made sympathy hard to come by - they sometimes wanted something to show for their illness.

Most people felt they didn’t know enough about CLL and how it might affect them. Several had no one to talk to about their concerns in between consultations and felt isolated. Talking with other people with CLL helped Jane to feel better about her illness. Others said they would like to meet other people in the same situation as themselves.

Some people were more successful than others at putting their illness to one side and getting on with their lives while watching and waiting. Marie said that after the initial shock of the diagnosis she managed to forget about her CLL most of the time and get on with her life. She hated it when people asked how she was.

Being on watch and wait requires a hospital visit for a check-up every few weeks or months or yearly depending how stable the illness is. Check-ups include blood tests, sometimes a physical examination for a swollen spleen or lymph nodes, and a chat with a doctor. Many patients have checks done in their local surgery which avoids the need for hospital visits. Some people had blood tests at the GP surgery a few days beforehand. Some people kept their own records of the blood test results. Some went to the hospital with a relative to help take in everything that was said.

Some people were dissatisfied with their consultations - the examinations seemed superficial and the doctors didn’t take enough interest in them and how they were feeling or appreciated the impacts that the illness and watching and waiting had on their life. This problem was compounded if they saw a different doctor each time. One woman said she… “Just want[ed] to be recognised really, that you have got something wrong with you, however major or minor”.

Some people we spoke to had not yet had any treatment for their condition, neither had their doctors suggested that they would need it. Some didn’t know what kind of treatment might be offered in the future or whether they would want to put themselves through it. Having read up about CLL and the watch and wait policy Jane persuaded her consultant to put off treating her until later.

After months or years on watch and wait, others had one or more courses of treatment with more watching and waiting in between. The need for treatment was indicated by a combination of high white blood cell counts and worsening symptoms. A woman seen by three different consultants said they had disagreed over the need to treat her.

See ‘Living with the symptoms of CLL’ for information about the impact of symptoms on people’s lives while watching and waiting. Leukaemia Care also has a useful leaflet on living with watch and wait the link can be found in our  'Resources section'.

*AML – Acute myeloid leukaemia
 ALL – Acute lymphoblastic leukaemia
 CML – Chronic myeloid leukaemia
 CLL – Chronic lymphocytic leukaemia
 MDS - Myelodysplastic syndrome

Last reviewed: December 2018.
Last updated: December 2018.

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