Intercranial germ cell tumours

HI BoDriftwood

A warm welcome to the online community. Thank you for sharing your story.

There's a diverse range of experience within this community so I am hopeful that someone with relevant persona experience will reach out here soon. My personal experience while supporting my late husband lies with Glioblastoma - an entirely different scenario.

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 strength

love n hugs

Wee Me xx

Thank you. 

Your story puts mine into perspective. I had 17 good years, and now I’m in my 34th ok year with a marked decline over the past two. However, I am still here, still functioning.

I am only just discovering that my issues have been a result of the treatments used to “save” me and that no one expected me to live this long. I now feel like I have been given a terminal diagnosis without an expected duration, but that is just melodramatic because on that basis I am no different to anyone else!

I am trying hard to avoid the “woe is me”, belly button gazing, but it is hard to cope with seeing the progress from what I was to what I am becoming accelerate. 

Thank you again for your message.

BoDriftwood

Hi, just come across your post. I too had a germ cell pineal region tumour … might not be the same but sounds similar. My pituitary glad functions (as far as I’m am aware!) as I’ve had two healthy children! I was diagnosed at 15 years old. I had surgery to relieve the pressure on my brain at the time, chemo and radiotherapy (not to the spine). I’m 20 years, this year, post treatment and I’d say I’m starting to experience the late effects from the treatment. Namely, I have vision issues with double vision and I’ve recently had a scan on my brain showing a new ‘cyst’ which I’m told is the damage from radiation. This has only just appeared. The late effects team are great but I do feel a little lost with my current symptoms. I’m nervous what 45/55 are going to look like if this me at 35. I’ve not heard of the central nervous system being impacted before so would welcome any information you’re able to share. I’m being told by my late effects team to kind of ‘slow down’ life and be kinder to myself but I don’t know what that means…if that’s to do with my nervous system? Take care! 

Hi Acky, thanks for the reply. If there is one thing I have learnt as a consequence of the last 30 odd years, it’s that you should take each day as it comes. Only worry about the things you can directly influence, the rest is wasted energy.