Living with a low grade tumour
Please watch a recording of our live panel discussion on living with a low grade tumour. It's chaired by Gideon Burrows, who's living with a low grade tumour.
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.
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:
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.
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:
Depending on your tumour and age, this could take many years, or not happen at all.
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:
Some people feel more secure by wearing a medic-alert bracelet in case of accidents or seizures.
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.
Find out more about Watch and wait in the full fact sheet.
Find out more in the full fact sheet - Clear Print version, designed to RNIB guidelines
The patient guide to living with a slow growing tumour.
Read more about his experiences and those of many others as they came to understand their diagnosis and learned how to live low grade.
Click here to buy Gideon's book on Amazon.co.uk
Page last reviewed: 05/2018
Next review due: 05/2021
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