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Head and neck cancer survivor stays positive

Network - Winter 2013

By Erica Quiroz

Ed Steger

Even after the removal of the left part of his jaw bone, a large section of his esophagus, part of his soft palate and a piece of his tongue, Ed Steger remains an optimist.

Diagnosed in 2005 with stage III/IV head and neck cancer, he went through an intense rehabilitation program to improve his swallowing and speech capabilities.

As a result, Steger speaks with a slower cadence and has dysphagia — difficulty in swallowing — and now “eats by gravity.” 

In 2007, he started a blog.

“I have a bit of a speech impediment, and I found that writing about what I’ve gone through was cathartic for me,” Steger says.

He also started working with the National Foundation of Swallowing Disorders — a nonprofit organization that raises awareness of how swallowing disorders affect a person’s quality of life. He became president of the organization in September.

“I work with ear, nose and throat physicians and speech language pathologists to educate and support people with swallowing disorders,” Steger says.

In his new role, Steger, who used to love to travel, does so when necessary. It takes considerably more effort now than before his cancer and treatment, but for the right cause, he’s up for an occasional trip.

A positive impact

Steger says he’s always been involved in things that make him feel good, and enjoys making a positive impact on people.

To continue that goal, he volunteered as a patient research advocate for the SPORE (Specialized Programs of Research Excellence) grant in head and neck cancer during his treatment at MD Anderson.

“At the time, I was the only patient sitting in with management, physicians and researchers in the head and neck area representing the patient perspective,” Steger says. “Once a month, I would sit and listen to presentations about new developments in research studies, activities and special projects.”

The most rewarding part of his duties was providing feedback to researchers during the biopsy selection process.

“The feedback I gave allowed the researchers to become more aware of how they presented what they were trying to accomplish,” Steger says. “The patient perspective enabled them to recruit more patients to their studies, which was a key goal.”

In remission since 2009, Steger lives in Virginia with his family. 

Steger says staying positive and having friends and family who understand his disorder has helped him through the tough times.

“Cancer changes your life, but with it comes opportunity,” Steger says.

“Some flexibility is required, and if you’re open to change, there are still ways to get fulfillment from life. I’m an optimist.”

© 2014 The University of Texas MD Anderson Cancer Center