In January 2020, at age 54, Yla Flores was told by her doctor that she was overdue for colorectal cancer screening. So when he sent her a Cologuard at-home testing kit in the mail a week later, she didn’t think much of it.
A colonoscopy, in which a doctor threads a scope and a camera through the colon to inspect it for precancerous and cancerous changes, is considered the most thorough way to screen for colorectal cancer. But colonoscopies are invasive and require anesthesia as well as a colon cleansing prep that many people avoid.
Because of this, doctors will often turn to at-home tests like Cologuard, which test stool samples for signs of blood and other cancerous changes as a first screen.
Flores, a real estate agent from Port Lucie, Florida, promptly mailed her kit back to the lab and checked it off her to-do list. Four days later, her doctor called to tell her the results were positive. Flores was floored. “I was convinced that I was going to get a negative test,” she says. “I had no symptoms. Nothing. So when I got that positive test, I was completely blindsided.”
A positive at-home colon cancer screening doesn’t always mean someone has cancer, says Trilokesh Kidambi, MD, a gastroenterologist and director of the colon cancer screening program at City of Hope, a cancer research and treatment organization in Los Angeles. In fact, the vast majority of positive at-home tests are picking up precancerous polyps, says Dr. Kidambi.
But Flores would need more testing to find out the significance of her test results.
A Screening That Came Just in Time
Flores called a clinic to schedule a colonoscopy, still naive to exactly how the next steps would unfold. “It’s a whole process. You call, you tell them that you got a positive result on an at-home test and that your doctor referred you to get a colonoscopy,” she says.
Her colonoscopy was scheduled for March 19, 2020, just after the COVID-19 pandemic started shutting down the United States and delaying nonessential medical care, like cancer screenings.
Colorectal cancer is the third leading cause of cancer-related deaths in both men and women in the United States, according to the American Cancer Society. Screening also makes it the most preventable type of cancer. Even so, less than 70 percent of people ages 50 to 70 in the United States get regular colorectal cancer screening, according to the most recent Centers for Disease Control and Prevention (CDC) statistics. The COVID pandemic made that situation worse.
Flores’s screening center stayed open long enough for her to get her colonoscopy. Flore's prep started the day before, and consisted of a clear liquid diet for about 24 hours before the procedure and drinking a solution that would clear out her bowels. The two strategies combined clean out the colon to give doctors a clear view during the colonoscopy. “The worst part was fasting,” she says.
Flores had never undergone anesthesia before and was scared. On the day of her procedure, she brought a good friend and her sister-in-law with her. When the doctor walked into her recovery room, she told Flores she was glad she had brought her support system.
“At first the dots didn’t connect,” says Flores. “I thought, I know my friends are fun, maybe she’s been having a great time with them. Then she said to me, ‘I’ve been doing this for 20 years, and I think it’s cancer.’”
Cancer Treatment During the Pandemic
Flores’s doctor also believed the cancer was advanced. She referred Flores for blood work and a computerized tomography (CT) scan, which would give more information about how advanced the cancer was.
“My world was swirling,” says Flores. “The word that resonated with me was ‘advanced.’ To this day, that word really sends me into a tailspin of emotion. I was like, ‘What does that mean. Am I going to die?’” she says.
That was a Thursday. She was able to schedule the blood work, which would detect circulating tumor cells in her bloodstream, for the next day at a lab that had not yet shut down because of pandemic. She was also able to set up a CT scan for the following Tuesday and booked a consultation with a surgeon for Wednesday. She knew she was racing time before the pandemic made care unavailable.
The pandemic delayed the results of her blood work and CT scan, so she didn’t have them with her when she met with her surgeon. When the surgeon looked at the paperwork she did have, he scheduled surgery for Friday. Within a week of getting a colonoscopy, Flores underwent surgery to remove a foot of her colon. She was ultimately determined to have stage 3 colon cancer.
The surgeon referred her to an oncologist, who would determine the medical treatment she’d receive.
In April, she got her first dose of chemotherapy, one of 12 rounds that she’d receive every two weeks.
Colorectal Cancer Doesn’t Discriminate
The first day of chemo was the hardest day of her cancer experience emotionally but not because of her own treatment.
“My heart was broken by what my eyes saw,” she says. “I saw older patients that looked fine and older patients that did not look fine. I also saw younger patients and every age in between. At that moment, I realized that cancer doesn’t discriminate. It doesn’t care about your gender, color, age, or race.”
Later, she would act on this realization. But first, she had chemo to get through.
The first week following treatment was always the worst. Her blood pressure dropped, causing her to faint, and she didn’t feel like eating. The medication she was on to combat nausea gave her neuropathy — tingling in her hands.
“I couldn’t even hold a fork. Chemo completely changes your life. It’s this overall feeling of unwellness,” she says.
By week two, she’d start to feel better, only to begin the process over again.
Flores’s hair thinned with chemo, but it didn’t fall out. Observers would never have guessed she was being treated for cancer from her appearance, she says.
But on the inside, she was gripped by fatigue, her body hurt, and her nerves were sensitive. She also developed a blood clot in her lung, a known risk associated with chemotherapy.
Reinventing Life — as an Advocate
It took Flores a year to get back into her life as she knew it once she’d finished treatment. When she did, she added a new facet to it — advocacy.
Flores, now 56, is an ambassador with Fight Colorectal Cancer, an organization that conducts research and provides information for patients who have been diagnosed with colorectal cancer. She is also determined to share her story with the Latinx community, in which cancer is the No. 1 killer.
Flores’s father is from Ecuador, and her mother is from the Dominican Republic. Among the recent trend of a higher incidence of colorectal cancer in people under 50, Hispanic Americans are disproportionately affected. A study published in 2016 in the Journal of Gastrointestinal Oncology, for instance, found that between 1997 and 2007 the rate of young colorectal cancer diagnoses in Hispanic Americans went up 45 percent compared with 27 percent in non-Hispanic whites and 15 percent in Asian Americans.
Screening is also low in this community. A recent study published in 2018 in the journal Cancer Causes & Control found that only 47 percent of Hispanics reported recent colorectal screening compared with 64 percent of non-Hispanics. And data from a recent Harris Poll found that 73 percent of Hispanic adults were less likely to believe they should be getting screened regularly.
“As a first-generation American, I am a part of the Latnix community, and it’s a community that can be underserved due to lack of information and awareness. This community is more likely to put off routine exams or ignore symptoms due to lack of insurance or time,” she says.
Members of the community also put off screening because they are too busy. “When our parents came to this country, they work, they work, they work, and they don’t see doctors,” she says. “So a lot of the time, when they do get diagnosed, it’s too late.”
She also tells people in the Latinx and Hispanic community that being nervous about colorectal screening is normal — but that they need to do it anyway. “We cannot allow ourselves to be crippled by fear,” she says.