In 2015, JJ Singleton, then 27, felt a throbbing pain in his abdomen. He thought he pulled a muscle — until the pain started intensifying. Then he noticed blood in his stool, started getting acid reflux and developed fatigue so bad that he went to bed by 6 p.m.
“I still kept ignoring it. I always had an excuse in my head about what was going on,” Singleton, 35, of Canton, North Carolina, tells TODAY.com. “I started getting dehydrated every day because everything I ate or drank, I would just throw it up.”
Singleton’s mom made him visit the doctor. By that time, the doctor could see his abdomen pulsating. Singleton soon learned why: He had stage 4 colorectal cancer, and that throbbing was the tumor.
“Looking back, I was that stupid typical male who’s like, ‘Nothing’s wrong,’” he says. “I would Google my symptoms, like what was hurting, and at the bottom, it was always stomach or colon cancer. And I was like, ‘That can’t be me.’”
Singleton is part of a growing trend of more young people in the U.S. developing cancer.
August 2023 research published in JAMA Network Open found that cancer diagnoses increased in people under 50 from 2010 to 2019, with gastrointestinal cancers, like Singleton’s, rising fastest. In the same time frame, rates of cancer in people over 50 decreased. A report from the American Cancer Society published in March 2023 found that people under 55 accounted for 11% of colon cancer diagnoses in 1995, compared to 20% in 2019.
The reason for the spike in colon cancer in young people, as well as other types of cancer, is currently not known. But in Singleton’s case, the cause of his illness is clear: He has Lynch syndrome, a genetic mutation that increases the risk of a variety of cancers for young people with it. Lynch syndrome also may be a factor in the growing rates of cancer in young people overall, experts say.
Singleton discovered he had Lynch syndrome after undergoing a test from Myriad Genetics. Suddenly, the premature cancer deaths of his relatives made sense.
“(My family has) a lot of family members that died young, but that was just God’s will. They didn’t question the thing. It happened and you move on with life,” Singleton says. “We had no indication that there was a genetic problem. I (had) never even heard or talked about genetics.”
What is Lynch syndrome?
Lynch syndrome is a genetic condition that increases a person’s risk of many kinds of cancer, often at a young age. Parents can pass Lynch syndrome to their children.
It “is a common form of inherited cancer risk,” Dr. Matt Yurgelun, director of the Lynch Syndrome Center at the Dana Farber Cancer Institute, tells TODAY.com. He estimates, based on recent studies, that about one in 300 people has some version of Lynch syndrome, putting it “on par,” he says, with BRCA gene mutations, which increase breast and prostate cancer risk, among others.
Having Lynch syndrome means you’re more likely to develop certain cancers before turning 50, according to the U.S. Centers for Disease Control and Prevention. These cancers include:
Some skin cancers
Colorectal and uterine cancers are the most common in people with Lynch syndrome, Yurgelun says.
Genetic testing can tell you if you have Lynch syndrome, though sometimes people do not find out until after they develop cancer.
For those who do undergo genetic testing — often because of a high number of young cancer deaths in their family — regular screenings help detect cancer in earlier stages. For example, people with known Lynch syndrome should undergo colonoscopies earlier and more often, every one or two years instead of every 10 years for those without an increased risk.
“(Colonoscopy) substantially reduces somebody’s chances of getting colorectal cancer if they have Lynch syndrome,” Yurgelun says. He also points out that research shows taking a daily aspirin can reduce colon cancer risk by 40% to 50% for those with Lynch syndrome.
To reduce uterus and ovarian cancer risk for those with Lynch syndrome, the best course of action is to remove them, Yurgelun says. Patients usually do this in their 40s or later, depending on the specifics of their Lynch syndrome, he explains, adding that it’s “a decision that everybody comes to at their own speed.”
The lack of awareness of Lynch syndrome means many people who could benefit from genetic testing do not get it.
“We’ve been trying to get the word out for a while,” Yurgelun says. “I don’t think it’s penetrated public consciousness as much as we would have liked.”
But before you spring for a genetic test without consulting your doctor, know that you shouldn’t be overly worried about Lynch syndrome, Yurgelun stresses. He recommends asking about your family history of cancer and that anyone diagnosed with cancer, especially if it’s at a young age, undergo genetic testing.
That’s because having Lynch syndrome can change how to treat the cancer. For example, chemotherapy works less well, but some new immunotherapies, which help the immune system fight the cancer, work “exceptionally well,” Yurgelun says.
“A big area in the field right now is figuring out how and when to use things like immunotherapy to treat cancers that arise in the setting of Lynch syndrome,” he adds.
Lynch syndrome changes lives
Dana, 51, who asked not to use her last name to protect her privacy, has had many family members die young from cancer. In fact, she and her sister believed they weren’t going to live past their 30s.
Dana’s father died of colon cancer when she was 2 years old, and it was “very far along when they found it,” she tells TODAY.com.
Her paternal grandfather died of cancer when her father was also 2, but the family knows little about it. They were living in Ireland at the time, and her grandmother moved to the U.S. after his death.
“They only knew it was cancer,” Dana says. “When they did autopsies on (my grandfather) — or anyone prior (in my family) — the cancer was always so far along they didn’t really identify the source.”
Dana’s great-grandmother was said to have died of stomach cancer, but it’s not clear if the cancer started or was just first found there.
For a long time, no one in Dana’s family would “even say the C-word. They were just afraid of it,” Dana says. “They didn’t know what was causing it. Nobody really shared any information.”
So, Dana and her sister enrolled in a clinical trial, where they both learned they had Lynch syndrome. Now, Dana undergoes an annual colonoscopy, and she took birth control for years with the goal of decreasing her uterine cancer risk. At 45, she had a hysterectomy. Every two to three years, she gets a procedure to check her stomach for cancer and even gets her urinary tract tested. Dana hasn’t had cancer, but her sister was diagnosed with colon cancer at 53.
“We’re just screening all the time,” she says. “Most people have been having a better quality of life since finding out (they have Lynch syndrome) versus (their older) relatives.”
After Caroline Yost was diagnosed with stage 1 breast cancer in 2018 at age 49, she underwent genetic testing and learned she had Lynch syndrome. Her mother was diagnosed with breast cancer in 2006, so Yost had been seeing a breast specialist for her increased risk.
“I made up my mind (when my mom had cancer) that if I were ever diagnosed with breast cancer, I was going to do a double mastectomy and be done with it,” Yost, who lives outside Atlanta and works for genetic testing company Invitae, tells TODAY.com.
A genetic counselor helped her understand her increased risk for cancers, and Yost decided to have a total hysterectomy, as she’d “finished having children,” she says.
Yost said her three kids were tested for Lynch syndrome, and they do not have it, so they cannot pass on the genes to their own kids.
To reduce her risk, Yost also undergoes yearly colonoscopies, frequent checks of her stomach and visits a urologist every year. But she prefers this cycle to not knowing about her health.
“(My Lynch syndrome diagnosis) put my mind at ease, and having that knowledge continued to let me be proactive,” she says.
September marks eight years that Singleton has lived with cancer. At first, doctors treated his cancer with a variety of chemotherapy cocktails. None of them worked.
“I was pretty much bedridden for most of the day because the cancer … grew around my stomach and completely closed it off so I wasn’t able to eat or drink,” he says. He relied on IV nourishment.
Then, Singleton faced two choices: starting hospice care or joining a clinical trial for an immunotherapy drug. He didn’t “want to die,” he recalls, so he knew which to choose. The experimental treatment shrunk his tumor, allowing him to undergo surgery, and now he can eat and drink again. Every three weeks, he receives an infusion of the medication.
Now, Singleton shares his experience as a patient advocate. He recently spoke about having cancer at a conference.
“(The immunotherapy) allows me to live my life more than I was before,” he says. “Having cancer changed me. … I’m a lot better person because of what I went through.”
This article was originally published on TODAY.com