Diagnosed with Medulloblastoma at 19

Posted by Hirad @hirad, Feb 24, 2025

I was diagnosed with Medulloblastoma when I was 19. I'm 20 now and had the tumor removed through surgery a little over a year ago. I have undergone 6 weeks of daily proton therapy and 4 rounds of chemotherapy since then and have recently finished my last round of chemo for the time being. I have had regular MRI scans since beginning chemo therapy and thankfully haven't had any signs of tumor growth or spread since my surgery. Yet I still have major anxiety and feel an impending sense of doom every time I reflect. What are my chances of long term survival at this point and how should I cope?

Interested in more discussions like this? Go to the Adolescent & Young Adult (AYA) Cancer Support Group.

Colleen Young, Connect Director | @colleenyoung | Mar 7, 2025

Hi @hirad, congrats on getting through surgery, radiation and chemo and no signs of growth. Yay!

That is a lot to go through and it is not surprising that you are facing major anxiety and impending doom when your mind is left to wander and wonder. I'm sure fellow young adult brain tumor members like @julcou55002 @gsu @ana15vankoeverden @kenzog33 know first-hand how that feels.

How to cope? First, I think it's great that you posted here. This can be hard to talk about with family and friends who aren't walking in your shoes. Have you talked to a social worker at your cancer center? Or do you have anyone you've talked to about your fears of the future?

es06123 | @es06123 | 4 days ago

Hi @hirad I was 22 in 2009 when I was diagnosed with medulloblastoma. I am now 38 years old and am an old AYA. Any questions you have about long term survival, ask me I will try to help. We may be broken but surviving I have attached a list of my disabilities and a couple photos of what is important to me

Shared files

Then and Now (Then-and-Now.pdf)

Disabilities (Disabilities.pdf)