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.
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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.
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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.
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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.
Treatment Centres
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.
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.
Your healthcare team
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.
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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.
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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.