From Lynch Syndrome to Leading Change: A Q&A with CRC Advocate Zakela Mickens

Written by Melissa Schenkman, MPH, MSJ

Zakela J. Mickens is a 33-year-old wife, mother of four, and Fight CRC Ambassador who lost her brother to stage 4 colon cancer when he was just 28 years old. After discovering she has Lynch syndrome—the same genetic mutation that contributed to her brother's cancer—Zakela has dedicated herself to bringing colorectal cancer awareness and education to her community. She recently organized a 5K run/walk event in Glen St. Mary, Florida, to promote colorectal cancer awareness and provide health resources to her rural community.

What had you heard about colorectal cancer prior to your brother's diagnosis?

Zakela: “Honestly, nothing. My brother's diagnosis was the first time I'd really heard about it. When we were younger, my grandmother was sick, but it wasn't until my brother was diagnosed and we learned about his genetic testing results that we discovered my grandmother actually had a colostomy bag and colon cancer too. Up until that point, I didn't know anything about colon cancer. I never knew anyone who might've had it, so it was a total shock and surprise when we found out my brother had it at such a young age of 27, already at stage four, with no previous signs or symptoms.”

Had you ever heard that young people could get colorectal cancer?

“Actually, I had not. Growing up in my community, when you hear the word cancer, you automatically think this is the end of the road for some people—there's no point of return. You typically hear about older people getting cancer. You don't really hear of young people getting cancer or dying because you're young and invincible. I was shocked to learn about colorectal cancer affecting someone so young.”

What made you decide to go from caregiver to advocate?

“My brother was my big brother, and I've always been told I'm like the mother goose of everybody because of my personality. After losing him, I felt it was my duty to step in because nobody else in my family was really doing anything. Being diagnosed with Lynch syndrome myself—having the same gene my brother had—I realized I know my history now, so what can I do to prevent it?

I began looking up different things and found a local event called the March to Get Screened Race in my community. We started participating the year after my brother passed away. Nobody else was really taking action, and while I understand my brother passed away from something he couldn't control, for me, getting preventative screenings means taking control of the situation.”

Can you explain what Lynch syndrome means for you and your family?

“Lynch syndrome is a genetic mutation that puts you at higher risk of developing certain cancers, particularly colorectal cancer. In the alive and kicking world—another organization focused on colorectal cancer awareness and genetic mutations—they call us "pre-vivors."

Since finding out I have Lynch syndrome, I've had four children, and I've been advocating to get them genetically tested before they turn 18. It was a fight with doctors initially, but I finally found a pediatrician who understood the importance. My 14-year-old son just had his first colonoscopy in November, and thankfully everything was normal. All four of my children are now scheduled for genetic testing.”

What's your advice for parents dealing with genetic risk factors?

“Don't stop advocating for your children. Providers know what they know, but you still have to do research, and there are special cases. If you're that one special case, you have to continue to advocate and push for yourself and your children. Healthcare professionals haven't seen everything and don't know everything. Not just younger adults can get cancer—children are getting colorectal cancer as well.”

How did you come up with the idea for your 5K event?

“It actually started when I went to my son's school to discuss tutoring options and ended up talking to the high school principal about peer-led tutoring. She noticed my "Love Your Buns" wristband and asked about it, which opened up a conversation about colorectal cancer awareness. When I mentioned wanting to do a 5K, she offered the school track. What started as a conversation about tutoring turned into getting approval for a community health event.”

What do you hope people take away from the event?

“I hope they walk away with knowledge about colorectal cancer awareness and who is actually at risk. Many people think, "It's not me, I'm healthy," or "I'm at this age," or "I go to the doctor all the time." But everyone needs this information.

I also want to help unify the community and build support for people. It sucks that so many people have to suffer alone because they don't have anybody or feel they need to keep things private. My brother initially wouldn't speak during chemotherapy—he'd just sit there respectfully but quietly. It was the support from his nurse and other patients that eventually helped him open up.”

Why are local events important for health awareness?

“Local events increase knowledge and awareness in ways people don't expect. When I'm in the community wearing my Fight CRC shirt or ambassador gear, people ask, "What is that?" To my surprise, many say, "I didn't know there was such a thing" or "I didn't know there was support for that."

These events are important because you're helping somebody with information they didn't know they needed or had been looking for. I like to call these "aha moments" keys—keys that people didn't know they needed or might have lost. Bringing awareness to a small community opens doors to endless possibilities of support.”

What's your advice for someone who wants to start their own health awareness event?

“Start small and write everything down. I've learned that you can't take on everything yourself. When you write things down, you might be the person who gets the idea on paper, but someone else might be able to execute it. If you keep everything to yourself, you might not find the help and support you need.

Communicate with people, share, and talk to people. I've gotten out of my shell of fear and put myself out there. Since doing that, I've made connections with people in places I never imagined. Use social media as a tool. Google groups or resources near you—there might be someone right in your community who either has what you need or can lend a helping hand.

Don't let fear keep you trapped. You have to put yourself out there and do the best you can, and keep showing up. If nobody else shows up, you show up. When people see that you're consistent, they have something they can believe in. You have to be your own advocate and the best example you want people to see.”

What's your ultimate goal through your advocacy work?

“My goal is to help supply individuals or families who may have a higher risk of developing colorectal cancer due to genetic mutations with funding to get genetic testing done, because it can be expensive. I want to do my part—even if it's just helping one person a month or one person a year—to help somebody cover the cost of getting that testing done.

If you have the gene, you know you have to put in the work with preventative screenings and do all you can so that if something does happen, you'll catch it early and be on top of it. You won't have to worry about being diagnosed with colorectal cancer at an advanced stage.

Being a Fight CRC Ambassador means the world to me. It gives me the opportunity to change the future for generations of individuals who have a family history of colorectal cancer or genetic mutations like Lynch syndrome. I can unlock doors for others in my community and around the world that will empower, enable, equip, and encourage them for the journey ahead.”

Want to hear more from Zakela? Listen to the YMyHealth podcast!