Ask the Nurse: Myeloma and watch and wait

Sometimes, people living with myeloma might be told they are on ‘watch and wait’. This means their condition will be closely monitored instead of immediately starting treatment.

If watch and wait is recommended for you, it can be a confusing time, but it means your doctor is confident that you do not need treatment straight away. This month, we explore some of the questions you ask our Myeloma Infoline team around watch and wait.

What is watch and wait?

Watch and wait is a term used when your condition does not need treatment straight away. Your healthcare team may use other terms that mean the same thing, such as:

• Active monitoring.
• Active surveillance.
• Watchful waiting.

It can be unsettling to be told you have a cancer diagnosis yet aren’t starting treatment immediately. However, watch and wait doesn’t mean doing nothing – it is an evidence-based management strategy.

When somebody with myeloma is under watch and wait, their healthcare team keeps a close eye on their health through regular blood tests and check-ups. By monitoring the myeloma like this, your healthcare team can pinpoint the best moment to begin treatment and protect your quality of life in the meantime.

Why wait for treatment?

Myeloma is a very complex and individual cancer. For some people, it progresses quickly and treatment is needed straight away. For others, it can develop slowly – for these people, starting intensive treatment too early doesn’t necessarily improve long-term outcomes. Instead, intensive treatments can cause some unpleasant side effects.

By waiting whilst your healthcare team closely monitor the situation, you preserve your body’s strength and keep your treatment options open. This means that when the myeloma does show signs of changing, you are ready for the most effective treatments at the most appropriate time.

When is watch and wait used in myeloma?

When people are diagnosed with myeloma (rather than MGUS or smouldering myeloma), the cancer is already active and typically needs prompt treatment.

However, watch and wait can play a role later. Following a period of remission or plateau, your paraprotein or light chain levels can begin to rise. If they are rising slowly and you have no other symptoms, this is known as a biochemical relapse. Watch and wait might be suggested in this situation for the reasons given above. Ultimately, it can give you more time free from symptoms and treatment side effects.

What about watch and wait for MGUS and smouldering myeloma?

For precursor conditions, monitoring is the standard of care as side effects of treatment currently outweigh the benefits of treating a condition that is not yet causing harm.

MGUS

MGUS (monoclonal gammopathy of undetermined significance) is a precursor condition to myeloma. It occurs when a type of white blood cell, called a plasma cell, produces an abnormal protein. This abnormal protein is called a paraprotein. MGUS is not a cancer and does not typically cause any symptoms. A small proportion of people with MGUS may go on to develop myeloma, but most will not.

Whilst specific watch and wait protocols are not typically used for MGUS, people diagnosed with MGUS still receive routine monitoring. How this is carried out can vary depending on local arrangements – you may need to make regular appointments yourself to have these blood tests. Speak to your healthcare team or GP about how your appointments should be made and who is responsible for making them.

Smouldering myeloma

Smouldering myeloma is an early form of myeloma that will eventually become active and so requires closer observation. In most cases, people with smouldering myeloma are offered watch and wait rather than treatment. There are clinical trials exploring if there is a benefit to beginning treatment before progression to active myeloma, usually for certain groups such as those identified as having high risk smouldering myeloma.

Guidelines recommend monitoring smouldering myeloma every 3–6 months depending on how stable it is. This will be carried out in a haematology clinic.

As with myeloma, the goal of monitoring precursor conditions is to identify changes before the myeloma has time to cause any complications which may result in lasting damage.

How do I cope with the uncertainty of watch and wait?

Being on watch and wait can feel overwhelming. Waiting for regular test results can cause anxiety, and the uncertainty can be exhausting. Coping is often about finding ways to live well alongside the diagnosis and the anxiety of waiting.

Some people find the following proactive approaches useful to manage the uncertainty:

• Stay informed and empowered: Understanding your specific markers and why active monitoring is a strategic choice can make the process feel less like a delay and more like the plan it is.
• Prepare for appointments: Keeping a notebook of any questions or concerns between appointments can help you feel prepared and able to make the most of appointment times.
• Focus on the things you can control: You cannot control your blood counts, but you can help to keep yourself as well as possible. Maintaining a healthy diet, getting regular gentle exercise and quality sleep can help you feel like an active participant in your care. Our Infopack for living well with myeloma contains lots of helpful tips.

Remember that you don’t have to carry this worry alone. If you feel able to reach out to a family member or friend, explaining how you are feeling can be helpful. More information can be found in our blog Ask the Nurse: Talking to friends and family about myeloma. Our Myeloma Information Specialists can also offer support – get in touch on 0800 980 3332 (UK) or use our Ask the Nurse email service.

How can I explain to loved ones that I have a diagnosis but I’m not on treatment?

This can be hard for those around you to understand, especially if they’ve not been at appointments. It can seem like their family member has been ‘fobbed off’ and more needs doing – or that there’s been confusion and they can’t have cancer if nothing is being done. You may find giving them written information such as our Myeloma – An Introduction Infoguide can help them to understand more about living with myeloma and our Infopack for carers of myeloma patients may provide support.

If you have any further questions or need support, contact us through the Myeloma UK Infoline at 0800 980 3332 (UK) or use our Ask the Nurse email service.