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.
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.
I utilised my hobbies, such as running, which helped my mental health and allowed me to de-stress.
Read Andrew's storyAndrew Dean-Young, diagnosed with a grade 3 anaplastic astrocytoma brain tumour in 2016
"I was out for a run when suddenly I woke up on the floor, with complete memory loss of the past half an hour. I was taken to the hospital where a shadow was found on my brain, and following subsequent scans, I was told I had a brain tumour.
"I received treatment for 10 months, as well as undergoing surgery, but due to the type of tumour I had, I was told I had to ‘watch and wait’ as often, similar tumours are likely to return within five years.
"Nevertheless, I utilised my hobbies, such as running, which helped my mental health and allowed me to de-stress. Going to local comedy shows also allowed me to heal, as ‘laughter is always the best medicine.’
I feel lucky that my work hasn’t been too affected, and I’m still able to work full time. I’m determined to make the most of my life now, and short term goals of mine include climbing Mount Snowdon for the first time, running 10k races to raise money for charity and releasing a new novel. I’m also an avid reader and use it as a way to relax. I’m so thankful for my support group - talking to people is vital and a great cure."
Join one of our Online Support Communities for more stories and tips about coping with a brain tumour diagnosis from people who know what you're going through.
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.
Some people feel more secure by wearing a medic-alert bracelet in case of accidents or seizures.
By joining one of our our Online Support Communities, you can get more tips about living with or beyond a brain tumour diagnosis from people who truly understand what you're going through.
