Danielle Burgess is the Communications Director for FightColorectalCancer.org. Diagnosed with colorectal cancer as an adolescent, she was re-diagnosed at the age of 25.
Genetic reports read by her medical team indicated Danielle had Lynch Syndrome, a genetic disorder that puts you at risk for colorectal disease. While she is the only person in her family to carry the Lynch Syndrome gene, it clearly highlights the importance of discussing family medical history.
Today, her passion in research to find a cure is stronger than ever. She has found her voice in the One Million Strong Movement. Join her and help find a cure.
Danielle, can you please tell us about your two-time journey with Lynch Syndrome/ Colorectal Cancer starting at the age of 17?
I was diagnosed with stage III colon cancer a few weeks after I turned 17 years old. Treatment lasted about 6 months & then I was on my way to finish high school. I graduated high school, went to college and began a career. Cancer had been a random event of my past and I enjoyed remission for 7 years.
During a follow-up colonoscopy my GI found a suspicious polyp and recommended I undergo surgery for a sub-total colectomy to (what we hoped) prevent a second diagnosis that all signs pointed to was inevitable. When I woke up from that surgery the doctors explained the suspected polyp had already turned cancerous. I was diagnosed with a second colon cancer at this time, stage I. I was 25 years old.
After this my medical team compared genetic reports from my first and second tumors. Both showed MSI instability and indicators that I had Lynch Syndrome, although genetic testing did not verify that. I began being treated as a patient with Lynch syndrome and underwent a total hysterectomy to remove the risk of an endometrial or ovarian cancer.
Around a year later or so I received a call that the genetic laboratory had reclassified my gene variant and it was no longer of “unknown significance.” I was officially diagnosed with Lynch syndrome. What’s still puzzling however is that both my mom and dad tested negative for the Lynch syndrome gene I have, which is highly rare. I’m still somewhat of a mystery.
What would you say to other adolescent survivors or those in remission how to overcome their challenges?
Be prepared for this journey to change and impact you in different ways the rest of your life. As you age and go through your teens, 20s, 30s and beyond, you become a different person. Your experience with your cancer & what that meant for your life will also change. Just expect it, and know it’s normal. This doesn’t only apply to mental/emotional issues but physical as well. I’m dealing with side effects just now springing up 15 years later… cancer never really “goes away.” Find trusted people to talk with if you’re having a hard time accepting that. It’s been a tough one for me.
How has your life changed since 2001 with your first diagnosis and now being in remission 15 years later?
I’m not sure anything in my life would be the same now had I not been diagnosed in 2001. I was on the cusp of becoming an “adult,” so it guided many of my life choices. I married my boyfriend who was with me back then (we’ve been married 11 years now), we adopted a baby because surgery put natural family planning out of the running for me.
I chose to work in PR/communications with the hope of working in a cancer organization after my experience. Now 15 years later I’m older and wiser. Some of that’s naturally come with age, as anyone goes through. But I’d like to think my cancer experience has helped me risk big yet invest wisely throughout the years.
As you connect everyday in your role with FightColorectalCancer, what aspects of survivorship do you see as being overlooked and under reported?
Psychosocial/emotional support – I see this every day. Doctors help fix our bodies but we need just as many people to help us cope and fix our minds and what the jarring diagnosis can do. It’s hard to talk about this stuff because many times it’s hard to recognize.
I also think practical tips on eating, exercising, etc. and how to go back to “life” as a new person (the new normal) is a hot topic survivors want to know more about.
Please tell our readers how they can help in the fight against colorectal cancer through FightColorectalCancer.org?
We need their voices. Voices change minds – in research. In policy. In awareness/screening. We have exciting & big things coming up for March – Colorectal Cancer Awareness Month. To be in the loop, it’s a simple sign-up at FightCRC.org/SignUp.