At 36, Danielle Ripley-Burgess has already survived colon cancer twice. She was first diagnosed at 17 and then again at 25. A member of the SurvivorNet patient community, a resource for people with cancer, the Kansas City, Missouri, mom shared her story with TODAY and urged others to speak up about their symptoms.
I had a cancer everyone thought old people get.
Towards the end of my 8th grade year when I was 14, I started seeing small specks of blood in my stool when I’d go to the bathroom. I didn't know what was happening. I downplayed it and tried to convince myself it was no big deal.
I thought, I’m eating something red and that's probably what I see. So I put myself on a “no red foods diet” and stopped eating anything that was red in color: everything from candy to pizza to salsa to raspberry Popsicles.
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It took me a while to accept that I was actually seeing blood, but I still hid it from just about everybody I knew. I was already embarrassed about puberty changes happening, so that on top of this thing was just too much. I didn't want to be sick and I didn't feel sick at first.
But it was nagging at me, so about a year or two later, I did mention something to my mom. We looked it up online and we saw it was probably hemorrhoids. She said blood in stool could also indicate something more serious, but it was something for people who were my grandparents’ ages.
I was like, great, I have hemorrhoids, and went on with my life. In high school, seeing blood in the stool became something very normal, even as it got redder, darker and scarier. Eventually, I had some intense stomach pain and I was getting fatigued. I couldn't play volleyball anymore. I just wanted to come home and sleep.
When I was 16, I told my boyfriend I thought I needed to see a doctor, but I didn't tell him the details. My mom overheard one of our conversations and realized I was still seeing blood. She told my dad and they called the doctor, who sent me to a gastroenterologist right away.
Just a few weeks after I turned 17, I was diagnosed with stage 3 colon cancer. I had chemotherapy, radiation and surgery to remove the tumor. I also had surgery to move my ovaries up into my stomach to protect them from radiation. Doctors wanted to save the ovaries to save the hormone function, but by elevating them, I couldn't naturally conceive anymore.
I thought I had beaten cancer. I was getting colonoscopies every three years and after one of them, I woke up and I saw the very same look on the doctor’s face that I had seen eight years prior. He saw a polyp that later turned out to be cancerous. I had no symptoms. At 25, I had stage 1 colon cancer.
Mentally and emotionally it was way harder this time. I got really angry at a lot of things, but deep down just angry at God — how could you let this happen to me again? By this point, I was married, I had a house, I was working on a career, we'd been talking about adopting a child. All of a sudden I realized I could lose all of these things.
When you have a second cancer like I did, you have to accept your life is always going to have cancer in it.
Right now, I’m not an active cancer patient, but I don't know a world without cancer in it, and that’s something I had to accept when my second occurrence came.
I don't have any family history and there was no explanation at first. I now know I have Lynch syndrome, a genetic disease that puts you at a higher risk for several cancers, with colon and rectal cancers at the top of that list. I’m the first in my family to have the mutation.
I underwent a subtotal colectomy, which basically takes out all of your colon except about 13 inches. If you don't have a colon anymore, your risk goes down.
Knowing that the next target for Lynch syndrome was going be either uterine cancer or ovarian cancer, I also had a hysterectomy to prevent that. Part of my whole cancer story is a story of infertility. Adopting our daughter became our route to start a family.
My surveillance needs to include yearly colonoscopies, and I get lab work and urine tests every year.
If I could go back and tell my younger self something it would be: Don't be embarrassed about your body.
More and more young people like me are getting colon cancer. Chadwick Boseman put a global spotlight on this problem, but I've been living in this for 20 years.
If you're seeing something with your body that's uncomfortable and weird and you're not ready yet to tell a doctor, tell somebody — a friend or family member. Don't sit in that place of: something is wrong with your body and you don't know what it is. Don't sit there alone. Don't downplay what you're seeing.
This interview was condensed and edited for clarity.
This story first appeared on TODAY.com. More from TODAY: