Erin Susino disconnected from reality when her doctors told her she had colorectal cancer.
The 42-year-old is part of a growing trend of cancer diagnosis among people ages of 20 to 49.
When Susino received her diagnosis, she wasn’t thinking about her age. Memories surfaced of her best friend, a cousin and their cancer battles. Both were 38 when they died because of breast cancer.
“I just felt like these two women in my life passed away before they ever turned 40; there's no way I'm getting through this,” Susino said.
Last year, the American Medical Association published research confirming what oncologists have been reporting for years: more young adults are getting cancer. Since the 1990s, the rates of people age 20 to 49 with colorectal cancer nearly doubled, according to the National Library of Medicine.
Making the issue more troubling, some patients, like Susino, are receiving the early onset diagnosis without a family history of cancer.
‘The New Normal’
Until 2021, 50 was the recommended age to start colonoscopies. Three years ago, the U.S. Preventative and Services Task Force changed the recommendation to 45 after evidence surfaced of a trend of younger patients.
“We weren't seeing this increase in the amount of patients that we're seeing today. And so we felt age 50 for screening for colorectal cancer was appropriate. But then something happened,” said Dr. Norbert Garcia-Henriquez, an AdventHealth colon and rectal surgeon.
What that “something” is, no one is quite sure.
“And not only are we seeing it in younger people, but we're also seeing a more biologically aggressive behaving sort of tumor, which is concerning,” Garcia-Henriquez said.
There is disagreement on whether tumors are more aggressive in young people or if the cancer is being caught later in young people because they’re not getting tested until serious symptoms manifest, according to the American Cancer Society. Patients are also likely to be diagnosed in a late stage because of higher uninsured rates in this group.
Many colorectal cancer cases are linked to genetic dispositions, such as Lynch syndrome, a genetic mutation in the DNA that commonly causes colorectal cancer, according to the cancer society. However, most early onset colorectal cases have an absence of hereditary factors, further adding to the mystery.
One study showed that early onset cancer cases increased by 1% to 2% a year between 1995 and 2020. For colorectal cancer, the disease has seen an increased rate of 3% to 6% per year for adults 20 to 39, cancer society data show.
Colorectal cancer still primarily affects people 50 and older, but the disease is now the leading cause of cancer death in men younger than 50 and the second leading cause of cancer death for women in the age group, data show. Data also point to Black people being disproportionately affected.
“This is not just a wave. This is like becoming potentially the new normal,” Garcia-Henriquez said.
Research is ongoing to see if environmental exposures or health behaviors are contributing to the rise.
One theory as to the increased diagnosis is the abundant availability of processed foods or fast food. One study by the American Medical Association found that excess body weight was associated with an increased risk of early onset colorectal cancer among women regardless of family history.
Garcia-Henriquez believes the population’s increased appetite for fast food and processed foods may hold the answer as to why more young people are being diagnosed.
“It's not just the fast-food restaurant is there itself. People don't want to take the time to cook at home, clean (dishes) and eat healthy stuff. They want a fast answer. They want the fast satisfaction,” he said.
“A perfect storm”
At the University of Florida, undergraduate students are being invited to participate in an experiment.
Older teens and young adults will be asked to drink two energy drinks a day for two weeks. From there, Dr. Thomas George, a clinical investigator in digestive cancers, will examine the participants’ feces for changes in their gut bacteria.
“If we can see a little bit of a change in a couple of weeks, then we can extrapolate forward what we think we're going to see over the course of two years, five years, 10 years, 20 years,” George said.
The team’s hypothesis is that energy drinks fuel a gut bacteria known as Atopobium parvulum, in the microbiome, causing it to grow and possibly damage the digestive system. The bacteria live in most people, but in low numbers. Too much of the bacteria means there’s a chance damage can occur.
“(It’s) what we call bad bacteria that thrives and creates maybe some damage; that's what's partially leading to some of the colorectal cancer numbers that we're seeing in younger patients,” George said.
The group has seen an enthusiastic turnout for the experiment and has filled half of its slots already. It’s expected to finish picking candidates by fall. This time next year, George is hoping to have an answer on how popular energy drinks may or may not contribute to the growing problem.
Whether energy drinks play a role or not, George agrees it’s highly likely the rise of early onset colorectal cancer cases may have something to do with exposure to processed foods and drinks.
“And coupled to that is younger patients now having more obesity than we've seen in previous generations, which leads to all sorts of hormonal differences in the body,” he said. “The overweight status of younger patients occurs during puberty when there are already large amounts of hormones, large amounts of growth surge that's happening in the body. And so together, it may be a bit of a perfect storm.”
Additionally, he’s curious how the presence of antibiotics in foods such as those used on chicken farms play a role in the microbiome.
“Our intestines are populated with trillions of bacteria that are supposed to live in harmony with us, help us digest our food, help keep our immune systems primed,” he said. Those bacteria, the good bacteria in our digestive systems, may be thrown out of whack at an early age if we're exposed to more and more antibiotics, either deliberately or unintentionally, through the food supply.”
On the flip, George and the team are curious to see if probiotics, found in yogurts, could help prevent the disease. The role of the microbiome and whether bacteria are creating protection or are the cause of early onset colorectal cancer remains an area of huge interest for the university.
“We're uniquely poised to look at that here at the University of Florida, where we have a large student population. We have a lot of young adults whose diets are maybe not as ideal as they should be,” he said.
Erin’s lucky fall
“Oh, this is real. Like, I really have cancer,” Susino said after receiving her diagnosis.
Last year, Susino was a student nurse tech and working on the colorectal floor. She was in a patient’s room for training. It was her first night of work at AdventHealth.
Then, she started to get dizzy and nauseous.
“I stepped out for 30 seconds. I felt like I couldn't handle being around the patient. I was like, ‘Who can't handle this? Come on you're going to be a nurse,” she said.
So she went back to the room. And then it all faded to black.
Susino fainted and ended up in the emergency room. Her hemoglobin – the protein in her red blood cells – was at a six. For women, it should be between 12 to 15 grams per deciliter.
“Her check engine light was going off,” said Garcia-Henriquez, one of the medical experts who oversaw Susino’s treatment.
It took much of the year to rule out other factors. Ten months later, Susino was receiving a colonoscopy and endoscopy. She was expecting it to be another dead end.
“I thought something strange was happening when the nurse asked in the recovery room, ‘Do you want your sister here?’” Susino said.
Garcia-Henriquez entered the room, along with Susino’s gastroenterologist, Dr. Hernan Lopez Morra, who found the tumor in her colon. Susino had Stage 2 colorectal cancer.
It’s unclear what the cause of Susino’s cancer could’ve been, as she doesn’t have a familial history of cancer. She considered herself a healthy eater, too, not eating a lot of fast food. She had previously struggled with obesity due to polycystic ovarian syndrome, which can cause weight issues. Susino underwent bariatric surgery in 2018, which made changes to her digestive tract allowing her to lose weight.
Whatever the reason, Susino felt her actions becoming robotic as fear set in. Garcia-Henriquez leaned in close.
“I assured her that everything was going to be OK. I gave her my contact information, my personal contact information as I do for all my cancer patients because it's a life-altering thing,” Garcia-Henriquez.
She was scheduled for surgery in February. Garcia-Henriquez removed 20% of Susino’s colon and 57 lymph nodes.
In March, Susino was cancer-free.
“I have no molecular residual disease in my body. This is the greatest outcome I could get. I'm ecstatic,” she said with a smile.
When to get screened
While Susino was a patient, she ended up on the same colorectal floor she was previously working on as a nursing tech student. Lying in her bed, she remembered having a thought while she was working before her diagnosis.
“I thought to myself, 'What if whatever's going on with me is something serious?' I could be one of these patients. And it was just like a fleeting thought, but now it's always kind of guided how I treat my patients.”
Having been on both sides of the bed, Susino feels she has compassion and understanding for the fear a patient might go through with a similar diagnosis.
“I can now say yes, I have gone through this, you can go through this, too. And you can live a full life,” she said.
Susino now encourages people to pay close attention and act.
“If you find anything weird, I always tell people to give yourself a week. If it doesn't resolve itself, go see a doctor,” Susino said.
The U.S. Preventive Services Task Force recommends that people at average risk for colorectal cancer get their first colonoscopy at age 45. A person with a family history of cancer may receive a colonoscopy 10 years earlier than whenever that relative was diagnosed. Others experiencing symptoms such as bloody stool or abdominal pain are advised to speak with a doctor.
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