Optic nerve glioma

[matyandwillsmum]

Hi,

My now 6 year old was diagnosed with one almost a year ago, yesterday we had the news that it was growing.

I was wondering if there was any other mumsnetters who have a child with this condition?

I'm so sorry you've had this news. Our son is a bit younger and had a different brain tumour which he was sent to the US for proton beam radiation to treat. Is radiation an option for this kind of tumour? Here is some info from the centre we were sent to. www.floridaproton.org/cancers-treated/pediatric-cancer/brain-tumors

Thanks for your reply Blackswan. Radiation is an option for William, however they are reluctant to use it as he's quite young. His tumour is benign so isn't a risk to his life but it could massively affect his sight if allowed to grow. We are seeing the oncologist on Wednesday and I think they'll suggest trying chemotherapy. How is your son now?

Our son's tumour, craniopharyngioma, is also 'benign' in the sense it can't metastasise to other parts of his body, but it has a high recurrence rate in the brain if not treated by surgery or radio and can cause blindness too, as well as death ultimately.
Complete resection wasn't an option without doing lasting damage to vital surrounding structures in surgery (hypothalamus particularly), which is why we were told he needed proton. Chemo isn't used for craniopharyngioma, I can see why you would want to opt for chemo if it would work for your son's tumour.

So far our son is doing just amazingly well touch wood. Proton is far less damaging to surrounding brain tissue than conventional radiotherapy, as there is a minimal entry dose and no exit dose with the beam... That's not to say there aren't risks. And if there are side effects, it will be in the very long term we will see it. Most likely short term memory loss but there are other potential risks. This is no picnic!

I hope the oncologist has a good plan for William when you meet this week. xx

Hi matyandwillsmum, I know you haven’t posted here for a long time but our son was diagnosed with optic nerve glioma a couple of months ago so we’re at the start of this journey. I just wanted to know how you’re doing and how’s your son?

It’s frightening and we feel quite isolated and uncertain of the future.

Hi EGBird, if you don't get any responses regarding the same tumour, I suggest taking a look on facebook, where you're likely to find parents with kids going through the same thing. I've found it v useful.
I'm very sorry you're in this place. One day at a time.

@EGBird1119 there are some genetic syndromes in which an optic nerve glioma (OPG) is common, and the main one is neurofibromatosis.

If this is the case, there is plenty of literature on the management of OPG for nf1. Usually unless it affects the vision or there is a risk of vision loss, an OPG will be left alone even if growing.
For Nf1 you can go on Inspire, as many parents there have been through the same thing. www.inspire.com/groups/neurofibromatosis-network/?origin=freshen

How was is found? Is the OPG symptomatic?

To increase your chance of reaching MNetters who posted in the past , such as @matyandwillsmum make sure to add a " @" before their username as a notification will be sent to their email.

I know it is very scary to hear the words "brain tumour" but the vast majority of OPG are low grade and benign, so stay positive.

Thank you @Kaiken. It was found as there our son developed hydrocephalus. Now that’s resolved Theres no other problems at the moment and he’s doing great. We’ll be having mri’s every 3months to check for growth and our ophthalmologist has said we’ll start chemo if it’s growing.

No symptoms of NF1 and they don’t think he has it.

Thank you so much for your reply. Any info or stories of people who have been through this would be so wonderful.

@EGBird1119 - I'll PM you x