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 
HI Ljb
a warm welcome to the online community.
Thanks for sharing your story. Your tumour type isn't one I am familiar with. My personal experience lies in supporting my late husband through the three years of his stage 4 primary brain tumour journey - a whole different proposition. However the membership of this community is diverse and I am hopeful that some of the other members may have more relevant personal experiences to share with you.
This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
For now though I am sending you a huge virtual hug and lots of positive energy.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
