Joliet woman with Lynch syndrome is still fighting for more colon cancer screening

Wenora Johnson, 55, of Joliet has made it her mission to advocate for colon cancer screening and colon cancer patients.

Every year, Johnson, a three-time cancer survivor and Navy veteran who has Lynch syndrome, submits proclamation information to the state of Illinois to recongize March as Colorectal Awareness Month.

In an email, Johnson said she was able to secure proclamations from Illinois and the city of Joliet declaring their support of this awareness, she said.

“Also, I’ve worked closely with the [American Association of Cancer Research] and helped with a video and my story about the effects COVID has had on delayed treatment,” Johnson said in the email.

According to the Centers for Disease Control and Prevention, Lynch syndrome is genetic syndrome with a predisposition to certain cancers, such as colon, endometrial and, in Johnson’s case, basal cell carcinoma.

Johnson was diagnosed with stage 3b colon cancer in 2011. Johnson’s doctor had suggested she take a fecal occult blood test, one of several screening tests for colon cancer, because Johnson was not old enough for a screening colonoscopy. Johnson was 45. The age to begin screening was 50 at the time.

The American Cancer Society now recommends that people at average risk for colon cancer receive their first screening colonoscopy at age 45. The American Cancer Society also said colon cancer can spread before it shows any signs. This is why screening is so important.

“Unfortunately, about 1 in 3 people in the U.S. who should get tested for colorectal cancer have never been screened,” according to the American Cancer Society website. “This may be because they don’t know that regular testing could save their lives from this disease, or due to things like cost and health insurance coverage issues.”

Johnson, who now must receive annual colonscopies because of her Lynch syndrome, had to wait an additional six months for her during COVID-19.

“I had three additional polyps,” Johnson said in a 2021 Herald-News story. “And one was precancerous.”

Johnson is an ambassador with Patient-Centered Outcomes Research Institute, “an independent nonprofit, nongovernmental organization in Washington, DC, ... authorized by Congress in 2010,” according to the PCORI website.

Listen to Johnson’s story at bit.ly/3Kepcxs.

For information about Johnson’s advocacy work, visit her PCORI ambassador page at pcori.org/people/wenora-johnson.