AUSTIN -- Carl Evans,57, has had neurofibromatosis type 1 as long as he can remember. It's a fairly common nerve disorder that starts off as small, brown spots on children and turns into small bumps or tumors. Over the last few years, one of those tumors began to grow significantly.
"It grew outwards and inwards," said Evans. "You can imagine, it was pressing against the organs in addition to what you could see."
What doctors saw astounded them.
"By the time he got to us, it weighed approximately 38 pounds and had grown to the point where it was basically sitting on his thigh when he would sit down," said Michael Webb, M.D., the executive medical director at NeuroTexas Institute at St. David's.
"I didn't know it was that heavy, but I knew it was increasingly more labor for me to carry around," said Evans.
"The biggest thing from our standpoint was the potential for the tumor to become to something more malignant to the point where it could spread to other areas of his body," said Webb.
Surgically removing a tumor that size presented definite challenges.
"A tumor of that size at that size, 38 pounds, probably 15 pounds of that at any one time is blood," said Webb. "That's a lot of blood to lose at one time."
Webb and a team of specialists removed the tumor this spring. It was benign. Evans says he's just grateful for his new-found, cancer-free mobility.
"People say things like, 'It is a life-changing experience,' and you say, 'Well that's a cliché and what does that really mean?'" said Evans. "It's hard to compare the quality of life between now and then, and the fact that I really feel like I got another chance."
Evans has a similarly sized tumor on his back that has to be removed surgically as well. That surgery could take place in two months. Evans and his doctors are hoping it will be the last surgery he'll need.
