If anyone has any knowledge of brain stem tumours, treatment and recover I would love to hear from you. My 31 year old daughter was diagnosed with a Pontine Mass Glioma which is situated in the centre of her brain stem. Recently completed six weeks of intensive radiotherapy, which coupled with taking high doses of steroids, has taken its toll. First MRI yesterday following treatment, now the wait to see her Neurologist and Oncology team on Oct 30th. It’s the waiting and not knowing that is the worst.
Thank you for reading.
Wishing you all better days.
Jx
Hi and welcome to the online community
I'm sorry to read that your daughter has been diagnosed with pontine glioma. This isn't something I know anything about but I've found this information for you on Cancer Research UK which you might not have seen.
I can see from your activity that you have joined the brain tumours group where people have posted about this type of tumour before. Clicking on the link I've created will take you back there where you could copy and paste your post from here into a new discussion there after selecting 'start a discussion'.
You might also like to join the family and friends group where you can discuss your worries and get support. To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself or post a question after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.
When you feel up to it, it would be really useful if could pop something about your daughter's journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
