top of page

What happens after diagnosis?

W

Active monitoring is when your healthcare team monitor your Waldenstrom's macroglobulinaemia, rather than treating it right away. You may hear it called ‘active surveillance’ or ‘watch and wait’.

Understanding your blood test results

Blood tests play a big part in helping your doctor to diagnose and monitor your Waldenstrom's macroglobulinaemia. But what are they and what do the results mean for you? Here we’ll take a closer look at blood tests.

Understanding blood tests

Treatment Centres

m

Waldenstrom's macroglobulinaemia is rare type of cancer and should be treated by healthcare professionals who have expert knowledge and experience of caring for people with the disease.
 

There aren’t any specialist centres treating Waldenstrom's macroglobulinaemia in the UK, but there are a handful of WM expert clinicians.
 

Many WMers are treated in local hospitals. Whilst being treated locally has benefits, the WM Guidelines recommend that clinicians work with WM experts when caring for people with the disease. WM expert clinicians have more experience of treating Waldenstrom's macroglobulinaemia, and will be more up to date on the newest treatments and clinical trials available to WMers.

Your clinician can refer you to these specialists for your treatment. Sometimes, travelling to a centre with a WM expert isn’t possible, for example because of where you live. In these cases, your clinician can still work alongside the WM expert to provide you with the most up to date treatment, so you can stay at your local hospital.
 

If you’re worried about the care you’re getting, or would like the reassurance of an expert’s opinion, you can ask your clinician for a second opinion. This is where your current clinician refers you onto an expert who can give their professional opinion on your treatment and care.

​

You may decide that you want to be cared for under the expert, or they might offer the reassurance you need about your current care or treatment plan. 

A treatment centre. Modern high rise glass buildings.
speech mark

Some people with Waldenstrom's macroglobulinaemia develop other conditions, for example Bing Neel Syndrome or Peripheral Neuropathy. In these cases you should be referred to a specialist for treatment of these specific conditions.
 

If you want to learn more about WM specialists, including finding one, please contact us. We cannot refer you, but will be able to sign post you to help you get the right care.

Treatment Centres
Your healthcare team

Your healthcare team

m

When you are diagnosed with Waldenstrom's macroglobulinaemia, you have a whole team of healthcare professionals who work together to plan your care. These healthcare professionals specialise in different areas of your care, and together they are called a multidisciplinary team (MDT).
 

You might have already met some of these people whilst you were being diagnosed. Some healthcare professionals you might not ever meet, although it is good to know who they are and what role they play.

An elderly patient man talking with a senior doctor
Heathcare Team Glossary

Where are you on your journey with 

bottom of page