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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!

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