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.
"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.
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.
"I think people tend to assume I am okay as I on watch and wait. I still get symptoms though and have good and bad days. Sometimes I have to give myself a gentle reminder that it's ok to not be okay."
"Initially I really wanted my brain tumour out, but now I just really want it to behave long enough to not need further treatment. It's a personal choice and is important to talk through all the pros and cons with your consultant."
"If you are not happy being on watch and wait, you are entitled to ask for a second opinion, just to be sure."
"I had CBT counselling to help me to manage the anxiety that being on watch and wait gave me. I try to recognise when I am worrying, remind myself that it's unhelpful and then refocus my mind to something else. Your GP should be able to refer you."
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.
If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.
By taking part in our Improving Brain Tumour Care surveys and sharing your experiences, you can help us improve treatment and care for everyone affected by a brain tumour.
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.
If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
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You can also join our active online community - Join our online support groups.