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Pathways to Discovery: Winter 2014

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Experts at UChicago Medicine Treat Man with Inherited Condition That Led to Rare, Deadly Cancer

To call Dejuan Anthony Evans a fitness enthusiast is an understatement. The Schaumburg resident is the epitome of strength, with his greatest feat being to deadlift 600 pounds. He is also a master of bodyweight exercises, doing pull-ups and push-ups and everything in between to challenge his physique. His outward appearance does not suggest that he suffered from an aggressive cancer.

The 36-year-old was born and raised in Evanston, IL. At age 6, he was diagnosed with neurofibromatosis, a rare inherited condition in which tumors grow on nerve tissue. Although the tumors are often benign, their growth can cause damage to nerves and other tissues. The only visible signs Evans had were some “café-au-lait” spots on his back and nodules behind his knee and on his wrist. When he was 15, the tumor on his knee began hurting.

His health insurance company would not cover surgery, however, deeming it “cosmetic.” His mother learned of a study at the University of Chicago, which would cover the medical costs. The University of Chicago Medicine has a long-standing neurofibromatosis program that is one of the few in the country that treats both adults and children.

The surgery crushed Evans’ dream of pursuing a basketball career. Shortly after, his mother succumbed to AIDS, leaving Evans an orphan at 17. He remembers being angry, bitter, confused until a suicide attempt at age 24 caused him to change the course of his life. At that point, he started taking care of himself and embraced a vigorous fitness routine. In 2011, he noticed a nodule growing along his spine, but he associated back pain with heavy workouts at the gym. But the pain became so unbearable that his wife urged him to see a doctor. Once again, Evans turned to experts at the University of Chicago Medicine.  

Imaging tests revealed a very large tumor growing beside his spine. The operation carried risk of death or paralysis. Rex Haydon, MD, PhD, associate professor of orthopedic surgery, successfully removed the 7-centimeter solid mass. The pathology results indicated a malignant peripheral nerve sheath tumor, an extremely rare soft-tissue cancer that arises from cells that surround the nerves. Only 50% of patients with a tumor of this size and type survive at five years.

This news led to a full-body scavenger hunt and the removal of 200 tumors over the course of 11 months by Ginard Henry, MD, who now practices in California. Another tumor was growing in between Evans’ scalp and skull, which his surgeon removed and reconstructed the defect with soft-tissue expansion and skin grafts. He was also treated with radiation on his back. He has had eight major surgeries, and will have another in February to remove a tumor on his pelvis. Evans says his life was saved by his doctors, including Dr. Haydon, Dr. Henry and James H. Tonsgard, MD, associate professor of pediatrics and neurology, and director of the University of Chicago Ambulatory Program for Neurofibromatosis.

He also maintains that if he had not been in good physical shape, he would not have survived. The spinal tumor was actually contained within his muscle, and it was caught before it had spread to the vertebra surrounding his spinal cord.
“I’m a true believer and proponent of fitness because my immune system had a big part of me surviving,” Evans said. “If we focus more on the nutrition and fitness aspect of everything, when life throws something like cancer at you, your odds are better.”

One of his favorite quotes is, “You never know how strong you are, until being strong is the only choice you have.” Evans is channeling his strength to help others overcome obstacles, serving as an inspirational speaker, a cancer survivor and awareness advocate, an author, a strength coach, and at-risk youth mentor. He credits his mother for inspiring his call to activism. Even as she was dying, she was handing out condoms in front of high schools, warning others to protect themselves from HIV/AIDS.

Evans was recruited by the American Cancer Society (ACS) to serve as a leader for the ambassador team to work with Congresswoman Tammy Duckworth (D-IL 8). He traveled to Washington, D.C. for the ACS Cancer Action Network National Lobby Day in September. By sharing his story, Evans hopes to draw attention to a cancer that most people have never heard of, and promote support for cancer survivors everywhere.


Ernst Lengyel