Back to basics
Spotlight on: active monitoring
For many people, active monitoring can be challenging, as having had a cancer diagnosis, most people expect to start treatment straightaway. In this article, and in our webinar, we explain what active monitoring is, why it is recommended for some people and the benefits of this approach.
What is active monitoring?
With a slow growing lymphoma, for many people there is no benefit from early treatment. Instead, you have check-ups to monitor how the lymphoma is affecting you. This is called active monitoring. You may also hear this approach referred to as ‘active surveillance’ or ‘watch and wait’.
Active monitoring means that:
- While you are well, you can avoid the possible side effects and risks of treatment for as long as possible.
- Treatment is still available when you need it, but this might not be for months or years.
- You may never need treatment. With follicular lymphoma, for example, up to 1 in 4 people will never need treatment. For these lymphoma types, there is good data that having treatment early doesn’t give any benefit in terms of your response to treatment or how long you can respond to treatment for.
“I am struggling being on active monitoring and almost want to be receiving treatment.
Komal, diagnosed with Waldenström’s macroglobulinaemia
Who might be offered active monitoring?
This approach might be recommended if you have a slow-growing (low-grade) type of lymphoma that is not causing problems that affect your day-to-day life. It might be suggested by your medical team if your:
- lymphoma is not causing troublesome symptoms
- lymphoma is not growing quickly
- blood tests don’t show any significant problems
- lymphoma is not affecting any of your major organs (such as your heart, lungs or kidneys).
Active monitoring might also be offered after a course of treatment that has shrunk your lymphoma but has not got rid of it completely. If the lymphoma that is left isn’t causing problems, active monitoring might be offered until you need more treatment.
What happens on active monitoring?
When you are on active monitoring, you have check-ups with your medical team. Your appointments will be specific to you, based on your individual circumstances, including how active your lymphoma is and where it is in your body.
If you have been on active monitoring without requiring any treatment, you may be offered a form of patient-triggered follow-up. Instead of regular pre-booked appointments, you are able to book your own follow-up appointments when you need them.
At the appointments, a member of your medical team will talk to you about how you’re feeling and whether you’ve noticed any changes in your symptoms or any new symptoms. They might also:
- feel your tummy (abdomen), armpits, groin and neck to check for enlarged lymph nodes or other signs that your lymphoma may need treatment
- measure your temperature, pulse, blood pressure and weight
- listen to your heart and lungs
- use a blood test to check your blood count.
You will also be given details of how to contact your medical team. You will be told to contact them if your symptoms change or if you’re worried about your lymphoma, and not to wait for your next appointment.
Living on active monitoring
Active monitoring can bring a range of emotions. Some people feel relieved that they don’t need treatment yet. Others find it hard to be told they have lymphoma but that it’s not being treated straightaway.
“Active monitoring is counter-intuitive: I have cancer, but it’s not being treated. There is no physical battle, but there is a psychological challenge.
Mark, diagnosed with follicular lymphoma
Although it can take time, many people find that they are able to adapt well to being on active monitoring. It can be helpful to think of lymphoma as a long-term (chronic) condition to manage and live with, a bit like diabetes or high blood pressure. Many people find ways to help manage their symptoms and adjust to a ‘new normal’ way of life.
Taking care of your general health and wellbeing can have many benefits. This includes eating a healthy diet, keeping active, not smoking, limiting alcohol intake, and taking time to relax and do the things you enjoy. As well as improving how you feel overall, these lifestyle factors can help to prepare you for any treatment you might need in the future.
What support is available?
Uncertainty and anxiety is common whilst on active monitoring. There is a range of support available, and options include:
- talking to friends and family breathing exercises, mindfulness, yoga or other complementary therapies
- talking to your clinical nurse specialist who can help to identify and address your physical, practical, emotional and social needs
- asking your GP about any support they might be able to offer
- contacting our helpline team
- connecting with others who are affected by lymphoma, for example through our support meetings, Live your Life workshops or closed Facebook Support Group.
Order or download our updated book Active monitoring for lymphoma on our website: lymphoma-action.org.uk/Shop
Watch our webinar where a consultant and a nurse who support people on active monitoring, and two individuals with lived experience, discuss ‘Living well on active monitoring’
Symptoms to look out for whilst on active monitoring
Tell your medical team about any changes to the symptoms you have, or any new symptoms that develop. It can be helpful to regularly note how you feel so you have a record to take to your appointments.
Know the common symptoms of lymphoma, but it’s important to note that they can have other causes. Having one or more doesn’t necessarily mean it is lymphoma.
Revised book on active monitoring
Our updated Active monitoring (watch and wait) for lymphoma book is now available to download or order free of charge through our online shop. It has a fresh new look, the most up-to-date information, and new personal experience quotes from people affected by lymphoma.
Not everyone with lymphoma needs treatment straightaway and many may be on active monitoring following treatment. This book explains what active monitoring is and why it might be recommended for you. It also covers what to expect from your appointments and offers tips on coping well.
