Hi everyone, I’m new to the group and wanted to introduce myself. My name is Lisa and I have had an intruder since 2020.
I’m 49 and was diagnosed with a suspected DNET brain tumour following a long and quite stressful diagnostic journey. They can’t say 100% it’s a DNET because they don’t want to do a biopsy due to the location, so I’m currently on a watch-and-wait pathway with regular scans.
I’ve been told this tumour wasn’t present in childhood, which I understand is unusual for DNETs, and I’ve never had epileptic seizures, which again seems less common. What’s worrying for me is that it is growing slowly each year, even though surgery isn’t currently recommended.
Alongside this, I also have IIH, and I’m finding the combination of symptoms, uncertainty, and monitoring really challenging at times. I struggle with health anxiety, especially around scan results and the “wait and see” approach.
I wanted to ask:
Does anyone else here have a DNET, particularly diagnosed in adulthood?
What symptoms do people have apart from Epilepsy?
Has anyone been on watch-and-wait with gradual growth?
How do you cope with the anxiety and uncertainty that comes with this?
Anyone using alternative therapies?
I’d really appreciate hearing from anyone with similar experiences. Thank you for reading 
