Ask the Nurse: monoclonal gammopathy of undetermined significance (MGUS)

In this month’s blog, we answer some of the questions you ask us about MGUS.

Ask The Nurse // 5th August 2022

For most patients, a diagnosis of monoclonal gammopathy of undetermined significance (MGUS) does not affect their daily life. However, it can be concerning to receive a diagnosis for which there is no treatment, that requires regular monitoring, and has a very small possibility of developing into another condition.

In this month’s blog, we answer some of the questions you ask us about MGUS.

What is MGUS?

MGUS is a benign (non-cancerous) condition in which the body produces an abnormal protein (paraprotein).

It is a common condition, and instances increase with age. About one in 30 people aged 50 years or older will have the condition, rising to one in 20 people over 70 years and nearly one in 10 people over 85 years.

About four in five people with MGUS will never know that they have the condition because it usually does not progress or cause any symptoms.

MGUS is often only diagnosed when tests are performed to investigate other problems.

How can MGUS affect my health?

Most MGUS patients have a stable condition that does not affect their general health.

Some MGUS patients have mild symptoms such are tingling and numbness in the hands and feet, but they typically don’t need any treatments.

As an MGUS patient, you will have regular check-ups and blood tests because a very small proportion of patients will develop a more serious condition, such as myeloma, AL amyloidosis or lymphoma.

About 1 in 100 people with MGUS (1%) each year develop a related cancer. For most people, MGUS will never progress into a more serious condition and will not require any treatment.

How is MGUS managed?

Typically, MGUS is actively monitored with blood tests but not treated. MGUS patients are usually checked 3–6 months after diagnosis. The checks are then usually reduced to every 12 months as long as no symptoms develop.

The healthcare professional monitoring you will also ask about your general health and if anything has changed. This is because new or worsening symptoms could be a sign that MGUS is progressing to a more serious condition.

If you experience new symptoms such as pain, particularly in your back or ribs, fatigue, and recurring infections, you should tell your doctor or nurse as soon as possible (within two weeks). You should not wait until their next appointment to tell them.

Use the MGUS Patient Diary to track test results and symptoms and read more information on why and how you will be monitored.

Who will monitor my MGUS?

Who will monitor you will depend on local practice. It could be your GP, a clinical nurse specialist or a haematologist. No matter who is monitoring you, you will have the same tests and monitoring done.

If you are being monitored by your GP, you can be reassured that your GP will monitor you for any signs of progression and act as appropriate. If you have new symptoms or blood tests show changes, such as a rising paraprotein level, your GP may arrange more tests for you and may refer you to a haematologist.

Are there any treatments to stop MGUS from progressing?

Currently, there are no specific treatments to stop MGUS from progressing. However, this is a focus area for our research.

We have funded two Early Diagnosis Research programmes this year, investigating screening programmes and ways to predict which patients are more likely to progress. The researchers aim to develop treatments to slow down or prevent the progression of MGUS.

Is there something I can do myself to lower the risk of MGUS progressing?

Unfortunately, doctors do not know why some people with MGUS develop cancer, and others do not.

You should follow the same basic principles of healthy living that apply to everyone, including eating a healthy, balanced diet and exercising.

A healthy balanced diet should include carbohydrates, protein, fruit, vegetables, dairy (or dairy alternatives) and fats. There are no known foods that MGUS patients should avoid.

As well as eating well, it is always a good idea to exercise regularly. Being physically active can improve your physical and emotional wellbeing and boost your mood.

Where can I go for emotional support?

Although most MGUS patients will never experience any symptoms and remain well, being told that you (or a loved one) have MGUS, may make you feel anxious or uncertain.

Talk to your doctor or nurse about your concerns. They can explain more about your condition and risk and arrange counselling for you if needed.

Our trained Information Specialists are just a phone call (0800 980 3332) or email away if you want to talk. You can also read our MGUS Infosheet for more information.