Riley Castro is a cover girl. In a blue bikini, she swims across the cover of a large, glossy magazine, showing off her flat abs and belly piercings. Yet, unlike most models, where her navel once was is now a foot-long scar, visible up her entire stomach.
“I’m proud of my scar and show it off any chance I can,” says Castro, 27, a social worker from Crestview, Florida. She is now in remission from stage 4 colon cancer, discovered three years ago while she was pregnant with her daughter.
Her appearance in On The Rise magazine has helped her spread the word about the increase in colorectal cancer among young people. Only once the magazine was published, and she heard from those who were moved by it to have a colonoscopy, did she realize the power and strength of her scars.
“It always lifts me up when I have people inspired by my surgeon’s ‘artwork,’” she says with a laugh.
Castro joins 11 other models in the 2018 edition of the two-year-old magazine from The Colon Club, an organization that educates and raises awareness about screening and early detection of colorectal cancer and provides support to those diagnosed with the disease. Their message: listen to your gut; if you have symptoms, get checked, advocate for yourself, and don’t let anyone tell you “you are too young for cancer.”
How it all started
In 2005, The Colon Club began publishing a calendar cleverly called “The Colondar,” to show that colorectal cancer is not just a disease for those 60 and above. Each year there were 12 young survivors – some even in their 20s – with prominent scars, proving that it can happen to anyone.
“Colorectal cancer can affect any gender, any race, any age, at any time,” says Trish Lannon, president of The Colon Club, who was diagnosed with stage 3 colon cancer in 2007 at the age of 39 and given a year to live. “We want young people to know their family health history. And if you’re pooping 20 times a day and losing weight, you should have a colonoscopy,” and not wait until you’re 50, the recommended screening age for average-risk adults.
The Colon Club switched to a magazine format in 2014, still featuring a dozen young survivors, but now able to share more of their models’ stories and articles about such topics as talking to kids about cancer, nutrition, personalized medicine, and more.
Being involved in the project was life-changing for Lannon, from Elkridge, Maryland, now an elementary school assistant principal and mother of three. “When I was diagnosed, all I knew about colon cancer was poop and your butt and things not pretty,” she says. “I wouldn’t talk about it to anyone.” But when she went to The Colon Club retreat and Colondar photo shoot and met others in her shoes, she felt empowered to tell her story. “I realized it doesn’t have to be a death sentence. I started helping others and fighting back.”
Today the organization distributes about 10,000 free copies of the magazine each year in a very “grassroots” way, she says. Everyone who has ever been featured in The Colondar or On The Rise hands out copies at local doctor’s offices, hospitals, colleges, health fairs, and races. They’re also available for $10 on their website. Advertiser-free, costs are covered through grants, donations, and fundraising.
Colorectal cancer: not 'sexy' but important to talk about
Lannon knows that this cancer is not sexy. “It’s embarrassing to talk about.” A breast cancer survivor too, she says, “women are comfortable talking about their breasts, but not their bathroom habits or butts. Anything waist down is taboo. But we need to get more information out there so people are more comfortable talking about it.”
After all, she says, the number of young colorectal patients is growing every year. In fact, excluding skin cancers, colorectal cancer is the third most common cancer diagnosed in the United States and the third leading cause of cancer deaths. An estimated 97,220 new cases of colon cancer and 43,030 cases of rectal cancer are expected this year with 3 in 10 cases in patients younger than age 55.
And while there is a decline in incidence of those over age 50 due to screening efforts, there is an increase in those under 50. In fact, researchers at MD Anderson Cancer Center made a prediction that by 2030, 1 in 10 colon cancers and 1 in 4 rectal cancers, will be diagnosed in people under 50.
“Don’t hide your scars,” Lannon says to other survivors. “They are your strength and your story. They say, ‘I am still here and still strong.’ It is so powerful if something good can come out of something so horrible. I’ve found my silver lining.”
Castro agrees. “I’ve had a few people tell me I've saved their lives by pushing them to get checked. That makes everything I've gone through worth it. Cancer is ugly, but it's the best thing that ever happened to me.”