When he was diagnosed with advanced colon and rectal cancer at the relatively young age of 38, Billy Burkart already had an inspiration for his fight -- his son, Ashton, who had battled and died of leukemia two years earlier.
"He showed me what it was, at 9 years old, to really be a man, to stand up and do what's right," Burkart said. "It's something that you can still live with and you can keep on going."
While colorectal cancer rates have declined overall, in part because of more screenings, rates are increasing in patients younger than age 50, who are not routinely screened. A new nonprofit called Shine for Scott, named for another young colon cancer patient who died last year, is hoping to raise awareness and funds for screening for younger people, beginning with a series of events this week.
Since the mid-1980s, the rates of colorectal cancer overall have been declining, a trend that has accelerated since 1998, according to a study published in 2009 in Cancer Epidemiology, Biomarkers & Prevention . But from 1992 to 2007, the rate of colon cancer among those 20-49 has increased by 1.5 percent per year in men and 1.6 percent per year in women, the study found. Various factors could be at play, from increasing rates of obesity, which raises the risk of colorectal cancer, to increased consumption of fast food and red meat and decreased rates of milk consumption, the study said.
"We think (diet) is a contributing factor but to what extent it's just hard to know," said study lead author Rebecca Siegel, the manager of Surveillance Information Services for the American Cancer Society.
Even with the increase, the number of colorectal cancer patients in that age group remains low, accounting for about 10 percent of all cases, she said. As such, it is probably not enough to change the guidelines of beginning routine screening at age 50 unless a patient is considered at higher risk.
The benefits "probably would not outweigh the cost and the risk," she said. "You'd have to screen so many people in order to find one cancer."
The benefit of her study, Siegel said, was to raise awareness about colorectal cancer in this group.
"That's what we were trying to highlight, as well as the need for more research to try to figure out what is going on," she said.
That's where Shine for Scott comes in. Like Burkart, Scott Walden was also 38 years old when he was diagnosed with advanced colon cancer and his family quickly discovered there was little support for middle-aged patients or middle-class families. Nor was his stage IV colon cancer -- the most advanced stage -- unique among younger patients, said his widow, Jennifer, who helped found the group.
"I met so many people with stage IV colon cancer and through our experience and all of them were under 50," she said.
Five-year survival rates vary in colorectal cancer, depending on when it is diagnosed. Survival is 91 percent for early stage, local cancer but is 11 percent if the cancer has spread to a distant part of the body, according to the cancer society's 2010 Cancer Facts & Figures.
Of the 51,370 people expected to die of colorectal cancer in 2010, more than half could have been saved by early detection, the cancer society said.
Until it happened to Scott, "I didn't realize how many people were affected by it," Jennifer Walden said. "And how much younger they were."
Burkart can relate to that. He didn't suspect cancer, but thought stomach flu was the cause of his sudden need to use the bathroom every time he ate back in 1996. When it persisted for a couple of weeks, he was referred to a gastroenterologist and then a colorectal surgeon, who did a colonoscopy and found a tumor large enough to basically block his colon.
Chemotherapy, then radiation, then surgery, then more chemotherapy gave him a chance. He relied on the example of Ashton, who battled leukemia for more than four years before succumbing in 1994.
"Thinking back on what he went through and what he taught me, and then of course the support from my wife (Alice) and family and friends, it really helped me get through it and keep the attitude that you need to have to keep going," Burkart said.
Shine for Scott is one way the family can keep Scott Walden's legacy going, Jennifer said. The group is aiming to help fund more research, to educate, to help pay for screenings for those ages 25-50 and to help support patients already affected by it, she said.
"We've already talked to several people who are facing colon cancer now that are in need of assistance that are 37 and 44 and 46," Jennifer said. "And they're stage IV."
The events in Augusta this week are highlighted by a walk Saturday and a party on what would have been Scott's birthday on Thursday. Jennifer knows it will be tough.
"I'm very apprehensive," she said. Just nine months after his death, she recently thought, "Oh gosh, I did this too soon. I just don't know if I'm ready."
But then she'll get a call from her vice president Maggie Pritchard, "and someone else has called her and someone is in need," Jennifer said. "We can't not do it. There's a need and we need to meet it."