Darcy Egan: Facing down FAP and colorectal cancer

Darcy Egan was 25 and about to graduate with a second master’s degree from John Carroll University in Ohio when life suddenly changed.

In preparation for a job as an English teacher, Darcy visited her doctor for a routine physical. Blood tests showed slight anemia, so the doctor urged her to see a gastroenterologistjust to be sure everything was OK.

“A lot of people have stories of doctors who don’t listen to them,” she says. “I have a story about a doctor who advocated for me, and I didn’t even know she needed to.”

The gastroenterologist performed a sigmoidoscopy, thinking it would rule out anything serious. A sigmoidoscopy inspects the last third of the colon, called the sigmoid colon.

“They showed me a picture, and it almost looked like bubble wrap,” Darcy says. The bubbles were polyps, which are growths that appear on the surface of the colon.

The doctor diagnosed Darcy with familial adenomatous polyposis, or FAP, an inherited condition that leads to hundreds or even thousands of polyps in the colon, which will one day become canceroususually by age 39, according to the National Institutes of Health.

A full colonoscopy led the doctor to a tumor and then another diagnosis: Darcy had stage IV colon cancer, despite zero family history of FAP or colorectal cancer.  

The reality of treatment put Darcy’s career on hold. The germ-infested halls of a high school aren’t the best place for someone in treatment, her oncologist said.

“I wanted to be in the classroom and putting these degrees to use,” Darcy, now 26, says. “The idea of not working and seeming unproductive was the biggest blow to me with the whole diagnosis.”

So while she continues treatment, Darcy isn’t sitting still. Quite the opposite, in fact.

She has become active in the colorectal cancer community, leading a team in the Cleveland Undy RunWalk every year, participating on the Alliance’s Never Too Young Advisory Board, and appearing on local news shows to talk about colorectal cancer.

At the Undy RunWalk in 2016 and 2017, Darcy assembled teams numbering more than a hundred people. They were former professors, students, family, and friends.

We had ‘polyps’ of all ages, from babies to grandparents—and even some dogs,” Darcy says. “Being at an event where you physically see 120 people, wearing your shirt, excited, and participating for you, is really cool.”

She also joined the Alliance’s Never Too Young Advisory Board. Through local and national initiatives, the board will raise awareness about young-onset colorectal cancer and remove the stigma of colorectal cancer.

Since 1994, cases of colorectal cancer in young adults, ages 20-49, have increased by 51%, according to the National Cancer Institute. Scientists aren’t sure why.

“A lot of time I see so much pink for breast cancer, and I don’t see a lot for colon cancer, but it’s important to talk about,” Darcy says. “I’ve made good friends who are in the same boat I am, so we kind of commiserate about our experiences, and it seems like if three young women on the West Side of Cleveland have the same diagnosis, that’s way too many.”

And on Fox 8 Cleveland, Darcy will again soon relate a message that’s very important to her, as someone who was diagnosed without any symptoms.

“At my age, a lot of people assume they’re healthy, and they don’t get to the doctor to have that baseline,” she says. “So I’ll talk about being an advocate for yourself, whether you’re healthy or you think something is wrong.”

 

In March, we observe National Colorectal Cancer Awareness Month. Join us as we build our nation of passionate allies, fiercely determined to end this disease within our lifetime.  

2 replies
  1. Barbara Gardner
    Barbara Gardner says:

    This story is so similar to my daughter’s.
    She was diagnosed with FAP at 35, with no history of colon cancer in the family. Too many polyps to count, and a malignant tumor that had already spread to lymph nodes. It was too late for her, and part of that was because she was “too young” for colonoscopy. You have an insightful medical professional for which you must be very grateful. Good luck to you and good bless.

    Reply
  2. Kathi McDonald
    Kathi McDonald says:

    I would love to see mandatory colonoscopy performed at 30 or sooner.
    My daughter was diagnosed with precancerous poloyp at age 14.
    My 26 had poloyp also.
    I had stage 3 colon cancer at 57 after being clear at agree 50!
    Insurance needs to pay for colonoscopy alot sooner

    Reply

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