While her friends were preparing for prom, Danielle Burgess was undergoing treatment for colon cancer. Diagnosed at age 17, she endured more than a decade-long battle with the disease.
However, Danielle decided to embrace her tragedy and make it into something positive, helping hundreds of people in the process.
A committed and outspoken advocate, she has devoted her life's work to colon cancer awareness. Danielle's story shows us colon cancer does not discriminate based on age, and that one person can make a difference in hundreds of lives.
Danielle was kind enough to provide thoughtful responses to our questions in the interview below.
Be Seen, Get Screened: What is your personal connection to colon cancer?
Danielle Burgess: I was first diagnosed with stage III colorectal cancer just a few weeks after I tuned 17 years old in 2001. I was terribly young for the disease.
I underwent surgery, chemotherapy and radiation but then went on to graduate high school, go to college, get married and start my first job.
In 2009, a routine colonoscopy discovered a polyp in question and it was suggested I take preventive steps and have a subtotal colectomy performed. It was a good thing I had the surgery – the polyp-in-question ended up being a second occurrence of colon cancer.
I was diagnosed with stage I in 2009 at age 25. Doctors suspected after my second occurrence that a genetic condition was behind my cases of colorectal cancer at such a young age and began treating me as someone with Lynch Syndrome.
I had a total hysterectomy in 2012 to eliminate as many cancer risks as possible. In spring 2013, the lab declared that I did “officially” have Lynch Syndrome. This past January I hit 13 years in the “fight” and this June I’ll be 5-years cancer free (again.)
BSGS: What are you doing to raise awareness of this disease?
DB: Being diagnosed as a teen, and especially in my junior year of high school, felt a little bit like both a blessing and a curse.
Looking past the obvious physical struggles, I did find that being a teenage colorectal cancer survivor gave me direction for life. I studied communications with the hope of getting involved in colorectal cancer nonprofits to further the cause.
My first “toe in the water” came with The Colon Club when I was selected to be in the 2009 Colondar. That opened the door for me to volunteer with the organization and help it get a new website and logo, and spread awareness through The Colondar and the Colossal Colon.
A few years later I met Fight Colorectal Cancer when they came to Kansas City for a photo shoot to launch a new awareness campaign, One Million Strong. I began freelancing and writing for this team and joined the staff full-time a few months later as the Director of Communications.
At Fight Colorectal Cancer, I work with our team to increase awareness of the disease through One Million Strong and encourage those who’ve been touched by this disease to get involved in advocacy and research.
BSGS: Tell us a bit more about your work with The Colon Club. How did you get involved with the organization and what are your favorite things about it?
DB: Both of the groups, Fight Colorectal Cancer and The Colon Club, have been a tremendous support. I’ve essentially “grown up” with cancer – and without these two, I’m not sure I’d be who I am today.
At my photo shoot with the Colon Club, it was the first time I didn’t feel so alone (or weird.) Meeting others who were diagnosed “too young” gave me a new family, and a community that’s supported me through surgeries, scares, losses and hardships that have come ever since.
I’m proud to serve on the Board of Directors for The Colon Club and keep this community going for other young survivors looking to connect with someone who “gets it.”
I love our out-of-the-box projects, the fact that young survivors flock to our message boards and find out they’re not alone and the fact we have created a network of survivors all over the country who are experiencing every stage of survivorship – from one year to 14 years out.
My other group, Fight Colorectal Cancer, entered my life and gave me new opportunities to “do something” with my experience. Being a staff member is a bonus.
I’ve truly learned how to be an advocate with Fight CRC. I’ve learned that my story is powerful, and sharing it will save lives and raise eyebrows.
Advocates at Fight CRC are like another mini-family to me, and it’s a joy to use my survivorship in positive ways like advocating for policy and asking for research funding. It helps give me purpose as to why I’m still here and make sense of my fight.
BSGS: In your opinion, why is it important for people to be educated about colorectal cancer and available prevention methods?
DB: There aren’t a lot of cancers out there you can prevent – most of them you can only detect. But this is one you can actually stop before it ever starts. Or, if cancer’s already arrived – you can catch it early and have a high likelihood of survival.
It doesn’t make sense not to get screened if it’s time for your screening. And for those outside of the screening brackets, if everyone knew the signs and symptoms of colorectal cancer and the fact it CAN occur in patients younger than 50, we’d save even more lives.
BSGS: Lastly, what is one thing you would like people to take away from your story?
DB: Hope. I’m a 13+ year survivor of colorectal cancer and have found a purpose and amazing people along the way. Although cancer is definitely unjust and a very difficult disease, there are silver linings to it if you let yourself see them.