My fight for future generations: colorectal cancer screening access


Axis had to fight to get a screening, despite a family history of colorectal cancer.

AxisOfAnarchy’s avatar (Art by Zaka)

In 2020, Rebecca Siegel, MPH estimated that nearly 18,000 people under the age of 50 will be diagnosed with colorectal cancer this year in the United States—yet we still view colorectal cancer as something that only affects older adults.

I’m AxisOfAnarchy, but you can just call me Axis. I’m about to turn 39 this year and two generations of my family have been diagnosed with young-onset colorectal cancer. A 3rd generation had diagnoses at later ages. I thought I was very lucky to know ahead of time that this was likely an issue that was hereditary—mostly based on the fact that the four people in my family all had cancer in the same part of the colon, and three of those people were around the same age.

Even with an overwhelming family history that dates back to my great-grandmother, I had to fight for access to care. I was supposed to start getting screenings at 32 because it was 10 years before the age when my mother was diagnosed. Unfortunately, insurance wouldn’t cover screenings until I turn 50 and the financial barriers were too high.

With that said, I got lucky. I was able to get genetic testing, and although my mom tested positive for a mutation in the MLH1 gene (commonly known as Lynch Syndrome), even with a 50% chance of her passing it to me, I tested negative. That means I’m at average risk of colorectal cancer. I have never been so happy to be average at anything in my life!

Even though my risk is not elevated, I will always talk about access to health care. The Prevent Cancer Foundation’s advocacy has resulted in getting the routine screening age lowered to 45, but when you have people diagnosed at 42 or 43 (like my mother, grandfather and great-uncle), it’s not young enough.

The fight for early screening is exhausting. So when I saw that Awesome Games Done Quick (AGDQ) was benefiting the Prevent Cancer Foundation in 2017, it was a no-brainer for me to speak out about my fight. I started tweeting and participating, as well as donating when I could. This past January, Games Done Quick put on a fun week-long marathon that raised over $3 million, which will help fund promising and innovative research. I look forward to seeing the results of this research, because I don’t want to see future generations continue to have to fight like I have.

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All in all, there’s a lot to be said of how far we’ve come, but we still have a fight ahead of us. Don’t be one of those people who thinks you’re too young for this shit because we’re finding out that, in reality, we’re not. We’re getting diagnosed younger and at later stages when the cancer is already more difficult to treat. We need to work to break down the financial and age barriers of screenings so that we can prevent cancer or catch it early.

The good news is that knowing your risk for colorectal cancer can still go a long way for prevention. Visit the Prevent Cancer Foundation’s website to learn more about potential risks for young-onset colorectal cancer and what you can discuss with your doctor to ensure you can stop cancer before it starts.

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