Living with a thalamus glioma can feel overwhelming—especially when doctors recommend a “watch and wait” approach instead of immediate treatment.
In this personal story, Jane shares her experience of being diagnosed with an inoperable brain tumour, how she copes with scan anxiety (“scanxiety”), and what life really looks like between MRI scans.
What Is a Thalamus Glioma?
A thalamus glioma is a rare type of brain tumour located deep within the brain. Because of its position in the thalamus—an area that controls important functions—surgery is often difficult or too risky.
Instead of immediate treatment, some patients are monitored over time using regular scans. This approach is commonly known as “watch and wait.”
How Jane Was Diagnosed
Jane shares her powerful and emotional story of being diagnosed with a brain tumour after what she thought were perimenopause symptoms.
At the start of the year 2025, Jane went to her GP to talk about possible perimenopause symptoms, including memory problems. She had been thinking about exploring HRT, but her GP became concerned about her memory and referred her for a CT scan.
At the time, Jane wasn’t overly worried. Her symptoms didn’t feel that serious.
Three weeks passed with no news, and she assumed everything was fine.
Why Doctors Chose “Watch and Wait”
On 21st March, Jane received a message from her GP asking her to come in urgently to discuss her scan results.
Although it didn’t sound good, she tried to stay calm. She took her husband Simon with her, initially planning for him to wait outside. But at the last moment, she asked him to join her for the appointment.
During the appointment, Jane was told that the scan had shown abnormalities in her brain. Doctors initially believed there were two tumours and suspected a multifocal glioma, a type of brain tumour.
She was told she would need further tests and possibly brain surgery, radiotherapy, and chemotherapy.
A Different Diagnosis
A few weeks later, Jane met with a surgeon.
There was some relief. It turned out there was only one tumour, not two, meaning it was not multifocal glioma.
However, the tumour was still believed to be a glioma, and it was located in the thalamus — a deep part of the brain that acts as a central relay for signals.
Because of this location, surgery was not possible.
This was a frightening moment, as it meant her treatment options were more limited.
Treatment Options and a Difficult Choice
Jane was offered the option of a biopsy, a surgical procedure that would take several hours and use advanced technology to navigate the brain.
However, due to the tumour’s location, the risks were higher.
After hearing about the potential complications, Jane and her husband felt overwhelmed and frightened.
Following further conversations with an oncologist, along with support from family and her own research, Jane chose a different path.
Living With a Brain Tumour: “Watch and Wait”
Jane decided to follow an active surveillance approach, often called “watch and wait”.
This means she is not having treatment or a biopsy right now. Instead, she has MRI scans every three months to monitor the tumour.
Doctors believe the tumour is likely low grade, meaning it is slower growing and not currently showing signs of being aggressive.
However, living this way brings its own challenges.
Jane hasn’t experienced major symptoms such as seizures, and the memory issues that led her to the GP may not even be related to the tumour.
But the uncertainty is difficult.
Every small headache or sensation can trigger fear, and she has to work hard to manage those thoughts.
After each scan, there is a period of reassurance. But as the next scan approaches, anxiety begins to build again.
Finding Support Through Charities
Jane found important support by joining The Brain Tumour Charity. After calling their advice line during a difficult moment, she went on to receive counselling and ongoing support. Sometimes she calls when she feels emotional, and other times simply to talk to someone who understands.
The charity also helped Jane and her husband have a very difficult conversation with their 10-year-old daughter, offering guidance through their children and families team.
Another organisation, Brain Tumour Support, has provided counselling for her daughter, including play therapy.
Jane says both charities have made a huge difference to her family during an incredibly difficult time.
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Turning a Diagnosis Into Something Positive
To give something back, Jane is organising a number of charity events. Planning the events has given Jane something positive to focus on and has become a form of therapy in itself.
She is passionate about raising money and awareness for brain tumour charities and hopes to make a meaningful impact.
Brain Tumour Community
Follow Jane on Instagram @memybraintumourandi. Where she shares her video diaries.
Places to find help and mentioned:
The BrainTumour Charity
The Brain Tumour Support
Brainstrust
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FAQs About Thalamus Glioma
What is a thalamus glioma?
A thalamus glioma is a rare brain tumour located deep in the brain, often making surgery difficult or unsafe.
Can a thalamus glioma be removed?
In many cases, surgery is not possible due to the tumour’s location in the brain.
What does “watch and wait” mean?
It means doctors monitor the tumour with regular scans instead of immediate treatment.
What is scanxiety?
Scanxiety refers to the anxiety people feel before and after medical scans, especially when waiting for results.
