Watch and wait (active monitoring)

For some low grade, slow growing tumours that are unlikely to spread, a watch and wait approach may be used. This is more accurately described as the active monitoring of your condition, without giving any immediate treatment, unless your symptoms develop, or worsen, or your scan changes.

The most common types of brain tumours to receive a watch and wait approach are newly diagnosed low grade gliomas (grade 1 or 2 astrocytomas, grade 2 oligodendrogliomas) and grade 1 meningiomas.

Why is watch and wait used?

Tumours that are typically slow growing and unlikely to spread may cause no, or only a few, symptoms for many years. In this case, a watch and wait (active monitoring) approach may be used, rather than give treatments that can cause considerable side-effects.

Examples where this might be the case include:

  • tumours with no symptoms that were discovered by accident
    e.g. following a scan given for a head injury (an incidental finding)
  • tumours in which the symptoms are such that you feel able to live with without them badly affecting your quality of life
    e.g. seizures that are being well-controlled by anti-epilepsy drugs
  • the tumour is growing in an area that's difficult to operate on and possible treatments will cause more harm than doing nothing
  • you don't want to have surgery or other treatments.

Watch and wait is also sometimes used after initial treatment, such as biopsy or debulking surgery, where part of the tumour is removed, before giving other treatments that could cause worse side-effects.

How does watch and wait work?

If you're on watch and wait, you'll see your specialist for regular check ups/MRI scans every 3, 6 or 12 months. You might begin treatment if:

  • there's a marked increase in tumour size
  • you develop symptoms, or worsening of symptoms, that badly affect your quality of life
    e.g. uncontrollable seizures
  • the tumour becomes a higher grade (starts growing more quickly)

Depending on your tumour and age, this could take many years, or not happen at all.

Emotional impact of watch and wait

Being told that you have a brain tumour, but no active treatment will be given until it grows bigger, or becomes more aggressive, can be very frightening. The time between appointments can also seem (or be) long, leaving you feeling isolated.

People who've been in this situation have told us about what they have found to help. These include:

  • learn more about your tumour and the support that's available - it can make you feel more in control
  • learn more about available treatment options before you have to make any decisions about how you want to proceed
  • ask how far apart your appointments will be - so you know what to expect - and whether there's a named contact
  • ask your health team for advice about when to contact a healthcare professional with regard to new or changing symptoms
  • keep your own files of every appointment and what was discussed
  • talk to your family & friends - about the risks and benefits and how you're feeling
  • speak to others in the same situation - we have several closed Facebook support groups that you can access from anywhere in the world and at any time. You can 'meet' other brain tumour patients and carers and discuss your worries or fears and share ideas.
  • bit.ly/FBSupportGroups

Some people feel more secure by wearing a medic-alert bracelet in case of accidents or seizures.

Getting a second opinion

If you're uncertain about the decision to watch and wait, you can ask your consultant or health team for a second or further opinion, either on the NHS or privately.

Although there's not a legal right to have a second opinion, a healthcare professional will rarely refuse to refer you for one. They'll not be offended and your care won't be affected.

Advantages:

  • if both doctors are in agreement, you'll feel more confident about their decision

Disadvantages:

  • it can delay to treatment
  • it may be upsetting to hear the same information
  • you may find it difficult to decide which treatment to have, if something different is suggested.

Page last reviewed: 05/2018
Next review due: 05/2021

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