Does anyone have a Dnet brain tumour?

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

Thank you so much ️

Hi Lisa 

Yes it hards. 

I aim to continue to eat healthy and get out and about as soon as possible after the surgery.

My daughter was in the away last week. She was cancel on holiday.  I did no to cancel her the lose the trip because of me was in the surgery  I was home in 3 days,amazing. 

She is come there to night and at the nextt GP account  on Friday and behold.

I hope you recover well. That's a fantastic picture. 

Hi,

Yes, I have what is a possible DNet in he Glioneuronal Tumour family.

I'm 52 now and was diagnosed just over 3 years ago after experiencing 'episodes' similar to seizures I had as a child.  Had an MRI and there it was, a tumour that they think I was born with and was the cause of the seizures when I was a kid.

I've taken medication that controls the seizures for 40 odd years (apart from the blip a few years ago).

In terms of the scan, I've had one every 3 months, 6 months and 18 months since I was diagnosed.  The latest one was earlier this month and it has grown by 6mm since 2024.  I'm not bothered as my feeling is that it has been there all my life, it's a grade 1 and grows slowly.  But because there has been growth, I have gone back to six months between scans.

I've learnt to cope with it and regardless of how much it grows, my view is that providing it doesn't cause me any problems I just try not to think about it.  It was horrible when I first got diagnosed but I still hate scans and all the anxiety that goes with waiting for results!

Hope that helps!

Thank you so much for replying — it really does help to hear from someone with a similar type of tumour and on a similar pathway.

I do feel very lucky that I’ve never had seizures, and I remind myself of that often. At the same time though, I’ll be honest — sometimes that then makes me question whether the diagnosis is the right one, especially as DNETs are so often linked with epilepsy. It really messes with your head and adds another layer of uncertainty to an already uncertain situation.

Like you, I’m finding that knowing it’s growing slowly but still being managed conservatively is one of the hardest things to get used to. Hearing how you’ve learned to live alongside it, rather than letting it dominate everything, gives me some reassurance that this gets easier with time.

Scan anxiety is definitely something I struggle with too — I don’t think that ever fully goes away, even when you’re told it’s low grade and slow growing. It does help knowing I’m not alone in feeling like that.

Thank you again for sharing your experience. It really means a lot and has helped me feel less isolated.

Wishing you all the best with your ongoing scans and monitoring.

Thankfully no seizures have happened  yet but await an action.  I am doing all options as suggested. That is  concerning. 

My have made my eating more tasty across lots of colours foods. All in all good for for the home  family. 

Planning  to try a small walk today if dry and have a freindon Tuesday. ..

• Thank you for your message. Everyone has different day to day experiences .m aiming.

I to a  normal to l¹jest as after the current stag

We have a small local theatre this week for to birthday. 

It is moment which is difi8for anyone on the  unload.

Takeover day at time.

I am just over one week since my surgery  but was extremely pleased to get it done.

A lot of one stages at a to 

Keep as healthy as possible. 

Try to rest

Add some treats with family and friends. 

You will they though it.

Alex I hope your recovery goes well. I have definitely changed how I think about food, eating healthy and taking gently daily walks helps. Just need to sort my health anxiety out.