Being Young With Colon Cancer— and Turning Pain Into Advocacy

By the time Shannon Lee-Sin finally learned what was wrong with her, she’d seen 20 doctors and had tried to get an answer for 12 years. 

She’d seen the first signs of trouble when she was still in high school. The daily stomachaches, Lee-Sin says, were frequently accompanied by blood in her stool, “but the water was actually red, like Kool-Aid.” 

Since she was a 17-year-old high school student, Lee-Sin and her mother did what was normal. 

“I went to my pediatrician,” she says. “I was a junior in high school, and I told him that I was having a stomachache every day and that sometimes at night the stomachache could be really bad.”

The same doctor had treated Lee-Sin’s siblings and other family members for decades.

A Surprising and Dangerous Trend

“He was obviously loved and respected,” she says. “Plus, it was 1999 and [this] wasn’t even a blip on the radar yet, in terms of early onset, so nobody thought they’d be seeing a polyp at that point. He never did any diagnostic test on me.”

She began treatment for an ulcer. Over the next five years, Lee-Sin’s symptoms got progressively worse, even though she took Zantac, drank various types of tea, and studiously watched her diet. 

No one knew it then, but  Lee-Sin was on the front end of the wave in younger people getting colorectal cancer. In fact, it was the late ‘90s and this was about the time colorectal cancer was shifting from being a disease that afflicts mostly white elderly people to one affecting people younger than 50 — and more Black people.

By the time the actor Chadwick Boseman, star of the blockbuster “Black Panther” movie, died in 2020 at age 43, colorectal cancer had become yet another disease that disproportionately affects the Black community. Equally alarming is that the disease morphed from affecting primarily people over age 50 and began afflicting younger people. 

Studies show Black Americans are almost 20% more likely to get colorectal cancer and about 40% more likely to die from it than most other groups. Researchers estimate that by 2030, colorectal cancer will be the leading cause of cancer deaths for people ages 20–49.

For Shannon, things came to a head after a friend took her out to celebrate her 29^th birthday. She awoke the next morning with severe nausea, stomach pain and constipation. 

“At that point, I would have diarrhea for two weeks, and then I’d be constipated for two weeks,” she says. “So, definitely not normal.” 

Lee-Sin was living with family members in Jamaica at the time, while she completed college. When she was rushed to the hospital, doctors diagnosed her with ovarian cysts, gave her painkillers, and sent her home — without doing any diagnostic tests. 

This started a series of hospitalizations that ended four months later, after she’d returned to her hometown of Miami. Lee-Sin’s mother found her unconscious one morning and took her to the hospital. Her mother vowed not to leave until her daughter was tested, “even if they have to arrest me.” 

Doctors again diagnosed a cyst, but she was also severely anemic and was in sepsis. That’s when Dr. Eric Valladares, a surgeon, decided to do exploratory surgery — a call that saved Lee-Sin’s life. 

“I woke up a week later hearing that I had Stage 3C adenocarcinoma of my colon,” she says. “And so, my first thought was, ‘Okay, God — this is going to be one heck of a fight, and at least now I know what I’m fighting.’”

After surgeons removed roughly a foot of her colon, Lee-Sin began chemotherapy. She also found a cancer support community that offered free mental health counseling. Lee-Smith was the only colorectal cancer survivor in the group, and, as was the case during  chemotherapy, she was also the youngest. 

“My doctors made me feel like I was their rare case, and there was nobody else like me,” she says. 

That changed in 2013, when Lee-Sin learned through the support group that a colorectal cancer conference was coming to Miami.

When she walked in, “I saw a room that 80% of them were young people like me,” she says. “This was in 2013. I realized that I wasn’t rare—and I wasn’t alone.”

Creating “Blue Couch Chat”

Having celebrated her 44th birthday last month, Lee-Sin reflected on her experience, including losing two close friends to the disease. Her long, difficult journey inspired Lee-Smith to help others. For years, friends had encouraged her to tell her story, and on February 9, 2023, the inaugural episode of her livestreamed YouTube podcast “Blue Couch Chat” came to life. Her choice of color is no accident.

“Blue has always been my favorite color and it’s also the color of a colorectal cancer ribbon,” she says.

The motto of Blue Couch Chat — “It is literally ‘the safe place to talk about your sh*t,’” she says — also reflects Shannon’s determination to create a safe space where patients and survivors can discuss issues ranging from mental health to the latest medical treatments. Lee-Sin’s first guest was a close friend who also had CRC and had supported her journey. The friend died five days later — on Valentine’s Day.  

Her goal is to ensure that patients know they don’t have to fight this disease alone and that people, especially Black people, are aware of CRC and the ways to avoid it–including screening. 

“Don’t make yourself go through what I went through,” Lee-Sin says. “If the doctor is not listening to you and you know something is wrong… find another doctor.”

It’s important to insist on testing to avoid misdiagnosis, she says. 

“The colonoscopy is the only way to actually prevent this,” she says. “I saw over 20-something doctors between the 12 years that I was misdiagnosed, and maybe even more, but I didn’t stop until I got an answer, and that’s what saved my life.”

“I didn’t stop until I got a doctor who listened, and that is really important,” Lee-Sin says.  “We have to know how to advocate for ourselves.”

RELATED: What We Need to Know About Colorectal Cancer Among Young Adults

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