Being told you have cancer but do not need treatment straight away can feel confusing and frightening. Many people with follicular lymphoma (FL) are surprised when their healthcare team recommends “Watch and Wait”, also known as Active Monitoring.
In a previous Follicular Lymphoma Foundation (FLF) webinar, lymphoma specialist Dr Brad Kahl explained why Watch and Wait remains an important, evidence-based option for many people with FL. Patient expert panellist Nicola Attfield also shared her lived experience of being on Watch and Wait for several years.
Watch and Wait does not mean doing nothing. It means carefully monitoring the lymphoma and starting treatment if and when it becomes necessary. Doctors consider several factors when deciding whether treatment is needed, including tumour burden – the amount of lymphoma present in the body.
People with a low tumour burden and no symptoms are often good candidates for Watch and Wait. In these cases, research shows that immediate treatment may not offer extra benefit compared with careful monitoring and treating later if needed.
Many people naturally assume cancer should be treated as soon as it is diagnosed. However, follicular lymphoma is usually slow-growing and behaves differently from many other cancers. Modern treatments can be very effective and often lead to long periods of remission, but they do not reliably cure FL for most people – yet. Because the disease can return years later, there is often no advantage to using treatment before it is needed.
Clinical studies have found that people with low-burden FL who started treatment immediately lived just as long as those who were monitored and treated later. In other words, early treatment did not necessarily improve overall survival.
The benefits of Watch and Wait
"Watch and Wait allows people to 'hold their ammunition' until treatment is genuinely needed."
Watch and Wait is not right for everyone. People with a higher tumour burden, symptoms or other clinical concerns may benefit from starting treatment sooner. Decisions should always be made with your healthcare team.
The hardest part of watch and wait is often the emotional adjustment. Living with a cancer diagnosis without active treatment can bring anxiety, uncertainty and a loss of control. Dr Kahl acknowledged that this can be psychologically difficult, but many patients become more comfortable over time as they understand the evidence and gain confidence in the monitoring process.
Adjusting to Watch and Wait can take time. It is natural to have questions, concerns and moments of uncertainty. But understanding why this approach is recommended can help build confidence in the process.
"For many people, Watch and Wait is the right treatment at the right time. It doesn't mean nothing is being done. It means we're monitoring the lymphoma carefully and keeping treatment in reserve until it is truly needed."
This previous webinar explores what Active Monitoring means, why it is recommended for many people with follicular lymphoma, and how others have navigated the emotional side of living with uncertainty.
Read our blog on which aims to shed light on the “Watch and Wait” strategy and the triggers for treatment, offering guidance to newly diagnosed patients on what to expect when discussing treatment options.
Read David’s story to learn what it’s really like to live with a Watch and Wait approach after a follicular lymphoma diagnosis, and how he learned to navigate the uncertainty that comes with it.
