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Smouldering myeloma

We're here for you if you want to talk

0808 2080 888

[email protected]

Smouldering myeloma is the name given to myeloma where there are no symptoms or signs of damage to your organs.

What is smouldering myeloma?

In smouldering myeloma (sometimes called asymptomatic myeloma), the level of paraproteins and light chains is lower than in active myeloma, but higher than in MGUS.

If you are diagnosed with smouldering myeloma, you won’t usually need treatment straight away. You will have regular check-ups so your hospital team can monitor whether the myeloma is changing and becoming active.

This approach is called active monitoring or watch and wait. Some medical staff prefer to call it watchful waiting or expectant management.

Why wait for treatment?

This decision is based on the knowledge that if there are no symptoms or signs of damage to your bones or other organs, it’s better not to start treatment.

If you find your doctor recommends active monitoring, it’s because it’s best for you and the type of myeloma you have. This will be a clinical decision based on scientific evidence, not economic considerations.

There are some situations where the diagnosis is smouldering myeloma, but treatment is recommended:

  • If test results show that the smouldering myeloma is very high risk and likely to progress to active myeloma soon, doctors may decide that treatment is best.
  • If you have no symptoms, but there are signs of damage to organs such as the bones or kidneys (or signs that damage is likely to happen very soon), then the myeloma is considered active and needs treatment.

The emotional impact of active monitoring

It can be hard to hear that you have cancer but are not going to be treated for it. Many people say they feel anxious about the situation, particularly around the time of their check-ups. It’s completely understandable to feel this way.

You may find it helpful to read our information about active monitoring, including personal stories from people who are on active monitoring themselves.

You may also like to join our online community forum to connect with other people on active monitoring for blood cancer.

If you want to talk to someone, contact our Support Service on 0808 2080 888 or [email protected] and tell us how you are.

You can also ask your GP or hospital team for a referral for counselling or you may be able to refer yourself. We have more information about how to get professional help.

Connecting with others

Myeloma isn’t the only condition where active monitoring may be recommended. It’s an approach used for other types of blood cancer too, such as chronic lymphocytic leukaemia (CLL) and follicular lymphoma.

Currently there are around 27,000 people on active monitoring in the UK, so there are many other people in a similar situation. You might find it helpful to talk to some of them on our online community forum.

"I had a long list of questions for my consultant. I started to ask them, but then I said, ‘You’d better have this sheet’. He answered my questions one by one, which was brilliant."

Joan, living with myeloma since 2006

Order our free myeloma booklet including questions to ask your medical team.

Joan, who is living with myeloma

Active monitoring FAQs

You won’t need treatment for myeloma if you have no symptoms and no signs of tissues damage in your bones or body organs.

Myeloma is treatable, but almost always comes back (relapses). There’s research going on in this area, but currently there’s no evidence that people live longer or better lives if the myeloma is treated before symptoms start. There are benefits in waiting:

  • You can avoid treatment side effects for as long as possible.
  • Treatments can become less effective after a while. So, although there are lots of treatments available for myeloma, it’s best to delay your first treatment while it’s safe, to keep your options open.
  • New treatments for myeloma are constantly being tested and approved, so waiting may also mean you have more treatment options when the time comes for treatment.

You will have regular check-ups with a haematologist – a specialist in blood diseases. You’ll have blood tests, your doctor will ask about your symptoms and you may have a scan, bone marrow biopsy or urine test. Find out more about common blood cancer tests.

Your doctor will tell you how often they think you need to be monitored to start with. If your test results stay the same over time and you don’t develop symptoms, then you may need appointments less often.

You should tell your hospital team if you notice anything different. It’s important to be aware of the typical symptoms of myeloma and symptoms of infection but do report any symptoms you have, even if you’re not sure they’re significant.

You may stay on active monitoring for a few months to a number of years. Everyone is different so it’s difficult to predict on an individual basis when smouldering myeloma might become active. Your hospital team are the best people to ask about your situation, as they will be monitoring you.

One general thing we can say is that if smouldering myeloma shows no sign of progressing for five years, the chance of it becoming active drops significantly, and gets lower over time.

There are a few things doctors will look at when deciding whether it’s time to start treatment:

  • the level of paraprotein or light chains in your blood
  • signs that the myeloma has started to cause damage – to your bones or kidneys, for example
  • whether you are experiencing any symptoms.

Your hospital team will be happy to explain your test results and what they mean, so don’t be afraid to ask.

You may also want to keep a diary of your symptoms so you remember to tell your doctor. This may help you feel a bit more in control.

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