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Life with A Brain Tumor

Published on May 1, 2019 in Share Your Story

My name’s Stephanie and at the age of 24, I was diagnosed with a Grade 2 oligodendroglioma brain tumor which was about a year-and-a-half after being diagnosed with colon cancer at the age of 22 and then diagnosed with Lynch Syndrome, a genetic cancer disorder that makes you more prone to certain cancers. When I was first diagnosed with my brain tumor, I was falsely told I had a month left to live because doctors automatically assumed my colon cancer metastasized to my brain which in fact it did not but they were quick to give me a prognosis without even doing a biopsy first.

My brain cancer is Lynch-related and a completely separate cancer from my first. Lynch Syndrome is a genetic disorder that is passed down from either mother or father, it’s a mutated miss-matched repair gene that makes you more succeptible to cancer and thats how I got my brain tumor, 1 in 279 people have Lynch Syndrome and only 5% know they have it. So back in July of 2017 I had brain surgery to install a VP shunt and was only able to have a biopsy done of the tumor because it turned out to be nonoperable. I did 6 weeks of radiation and 7 rounds of chemo.

The tumor shrank significantly with treatment but it’s still there and it’s still cancer so I’m just living life with a brain tumor until we find a cure. So I am walking and raising money to hopefully find a cure for brain tumors so that I and many others can get our lives back and also spread awareness about Lynch Syndrome for both patients and doctors!


Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.

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