Watch Wait Worry

Join our Watch Wait Worry campaign and help us to improve the support offered to patients on Watch and Wait.

Hearing the word Leukaemia was such a shock.  He then went on to say that I would be put on ‘watch and wait’ and we were dismissed.” [Wendy, 67]

It is estimated that there are currently around 13,300 Chronic Lymphocytic Leukaemia (CLL) patients living on Watch and Wait, instead of being treated. A process that patients often call ‘watch and worry’.

Watch and Wait (otherwise known as active monitoring) is the process of regularly monitoring CLL over time to see how the cancer progresses. Treatment will only begin once CLL cells are taking up space within the blood, causing a reduction in healthy cells and causing greater symptom burden for the patient.

While there are indicative factors, the length of time a patient is on Watch and Wait before requiring treatment is a significant uncertainty.

 “I didn’t like the fact that I could not find out WHEN it would affect me, or develop.  I still feel like it is a silent timebomb waiting to blow up.” [Diane, 50] 

The average length of time before treatment is 5 to 10 years, but some patients are only on Watch and Wait a short period of time before treatment commences and around a third of patients are never treated.

For many patients there is a substantial emotional and physical burden that comes with Watching and Waiting, or rather, worrying.

“Watch and Wait or “Watch and Worry”? How long would this go on? I resigned myself to trying to put W&W to the back of my mind and get on with my life despite the restrictions that my condition were putting on me.” [Ian, 69]

In our latest report, we reveal that over half of CLL patients on Watch and Wait report feeling more depressed or anxious following diagnosis. However, there is a significant lack in provision of both information and support to help these patients come to terms with their diagnosis and adjust to living with an incurable cancer.

You can download the Watch and Wait</span >Worry report.

At Leukaemia Care, we want to see more patients living well on Watch and Wait, by improving the supportive care patients are receiving and ensuring they are being signposted to further information.

Therefore, we have launched our new guidance document for patients, Living Well with Watch and Wait. This guide uses the experience of CLL patients to provide you with helpful advice and point you towards the resources that can help you during your CLL journey.

Download ‘Living Well with Watch and Wait’

Zack Pemberton-Whiteley, Campaigns and Advocacy Director at Leukaemia Care, said, “No cancer patient should be left feeling alone to watch and worry after diagnosis. Chronic lymphocytic leukaemia patients may not always require treatment straight away, but the patients are coming to terms with living with an incurable cancer which may, or may not, need treating at some stage. More needs to be done to improve access to support and signposting to information, which is what we are trying to do at Leukaemia Care in our Watch, Wait, Worry campaign.”

The experience of CLL patients is at the heart of the Watch, Wait, Worry campaign and we would like to thank those who have been involved in developing the content.

Patient stories

Paul

 

When Paul was diagnosed with chronic lymphocytic leukaemia (CLL) in 2003, he was placed on Watch and Wait. As treatment loomed, Paul found it harder to cope with his diagnosis.

Read his full story here. 

Erica

 

When Erica was diagnosed with chronic lymphocytic leukaemia (CLL), she thought she had been handed a death sentence. However, 14 years later and still treatment-free, Erica shares her experiences of Watch and Wait.

Read her full story here.

Marc

When Marc was diagnosed with chronic lymphocytic leukaemia, he turned to the internet for information and support. Since diagnosis, he’s learnt more about his condition and has come to terms with its effects on his life.

Read his full story here.

Wendy

Wendy was diagnosed on New Years Eve 2014 but was not told her CLL was a cancer.

Read her full story here.

Sandra

Sandra has spent 18 years on watch and wait.

Read her story here.

David

When David was diagnosed with chronic lymphocytic leukaemia and placed on Watch and Wait, he had no understanding of his diagnosis or prognosis. However, after attending a Leukaemia Care information day, he made a decision that changed his care for the better.

Read his story here.

Ian

Ian has been on watch and wait since his diagnosis in 2012.

Read his story here.

Mick Smith MBE

When Mick was admitted to hospital for treatment, he did not expect to leave with a leukaemia diagnosis.

Read his full story here.

How can you get involved?

  1. Download the Watch and WaitWorry’report and Living Well with Watch and Wait’
  2. Request a hard copy of our ‘Watch and WaitWorry’report and ‘Living Well with Watch and Wait’ here.
  3. Share your advice for living well on Watch and Wait using #WatchWaitWorry on social media
  4. Read the stories from patients supporting the campaign (Marc, Erica, Paul, Wendy, Mick, Sandra, David W, Ian)