When WM transforms
In rare cases, Waldenstrom's macroglobulinaemia can change (or transform) into a faster-growing, or high-grade, form of lymphoma. It’s important to remember that WM doesn’t transform in most people. However, it is good to be aware of the symptoms so that you can get a quick diagnosis and receive treatment.
What is transformation?
Waldenstrom's macroglobulinaemia is known as an ‘indolent’ or ‘low-grade’ form of lymphoma. This means that it is slow growing. Waldenstrom's macroglobulinaemia is one of many different types of low-grade lymphomas which may not need treatment for some time, if at all. If you do require treatment, most people have periods of remission (when cancer cells can’t be found) and some will later relapse (when cancer cells start growing again).
High-grade lymphomas on the other hand are faster-growing and might be referred to as ‘aggressive’ lymphomas because of this. High grade lymphomas often need treatment straightaway. Most people who are diagnosed with a high-grade lymphoma are treated successfully and stay in remission.
Very rarely, a low-grade lymphoma can change (or transform) into a high-grade lymphoma, meaning the cells change from slower-growing into faster-growing ones. In most cases, WM will transform into a type of high-grade lymphoma called diffuse large B-cell lymphoma (DLBCL), but it can transform into other types of high-grade lymphoma too.
Transformation can happen at any time – it might be found at diagnosis with WM, or it may happen many years afterwards.
If you’re diagnosed with a high-grade lymphoma, it doesn’t mean your WM has disappeared but that you have aggressive lymphoma cells in your body alongside your low-grade WM.
Why not start treatment straightaway?When you’re first diagnosed with WM, being told you don’t need immediate treatment may surprise, or even worry, you. You might think that it must be better to kill the cancer cells before they can increase more. However active monitoring is a safe and recommended way to care for people with slow-growing cancers like WM. There isn’t any evidence to show that being treated earlier has any benefits. Treatment itself can have some harsh side effects, which can be long lasting. By putting you on active monitoring, your doctor is saving treatment for when it can have the maximum impact. If your doctor sees signs that your WM is worsening, they will discuss treatment options with you immediately. However, many people stay on active monitoring for years, meaning they can lead full lives without the side effects of needless treatment.
What happens on active monitoring?You’ll have regular check-ups with your healthcare team, where you’ll have blood tests and a chance to talk about how you’re feeling and any symptoms or concerns you have. Normally these are face-to-face at the hospital, but since the COVID-19 pandemic, many check-ups have moved to video call or telephone. This doesn’t affect how you are monitored, just the way you speak to your healthcare team. Your blood tests and symptoms will help your doctor understand how your WM is behaving, and whether it’s time to start treatment or not. The check-ups also mean your doctor can pick up on any other conditions, for example anaemia, and ensure you get the right treatment for this. It’s important to raise concerns or mention any symptoms, however minor, at your check-up as your healthcare team might want to investigate these further. When you’re first diagnosed, these check-ups may be more frequent – for example, every 3 months – but as time goes by and if your WM remains stable, the check-ups may become less frequent. Some people who have been on active monitoring for years might have one check-up a year.
Is active monitoring safe?Yes. It is the recommended way to care for people with WM that isn’t growing and who either don’t have symptoms or whose symptoms are mild.
It’s important to remember that Waldenstrom's macroglobulinaemia transforms only in very rare cases, and your healthcare team will be checking you at appointments for any sign that your WM is changing.
If you are worried for any reason, you should always contact your healthcare team who will be able help and advise you.
Being diagnosed with a high-grade lymphoma might come as a shock and cause anxiety about your future. Keep an open line with your clinician and clinical nurse specialist (CNS), who will be able to help you find the support you need.
Whether you’re worried about symptoms, or want to talk through any questions, you can contact WMUK anytime by email or phone: 0300 303 5870.