Kelly Spill was 28 years old and nine months pregnant when she first got the sense that something wasn’t right. In the final weeks of her pregnancy, she was feeling more constipated. But that was something, she knew, that could be attributed to pregnancy. More disturbing was the blood she’d started noticing in her stool.
“When I went to my ob-gyn for a regular checkup, I mentioned it and they said, ‘Your body is going through a lot right now, I wouldn't worry about it.’ I thought that made sense; it was my first baby, and I didn’t know exactly what to expect,” says Spill.
But her symptoms continued postpartum, and Spill knew it wasn’t normal. When she went for a second checkup, she brought up her concerns again, and, once again, she was told not to worry.
“That doctor said that he was 99.9 percent sure that it was internal hemorrhoids.”
Internal hemorrhoids cause swelling of veins inside the rectum and can cause bleeding. They are not uncommon during pregnancy. And it was a reasonable guess, given Spill’s age and her pregnancy.
She started the medication he prescribed and used it for a month. Nothing changed. If anything, her symptoms got worse. This time, she went to her primary care physician, who did bloodwork, which came back normal. That doctor diagnosed Spill with internal hemorrhoids, too.
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A Cross-Country Move, Worsening Symptoms, a Surprise Diagnosis
Spill and her husband moved across the country, back to New Jersey, where Spill grew up, shortly after she saw her primary care physician. Spill felt less and less well. Soon, she says, she felt sick all the time, and found herself not eating enough, which stripped weight from her small frame.
With so many doctors having told her it was nothing, however, she was reluctant to make another doctor’s appointment. “I was stressed at my new job and I didn't want to miss any days,” says Spill. She and her husband were also between health insurance plans. “I kept putting it off,” says Spill.
But one morning, the warning signs became too clear to ignore. “I went to the bathroom and looked down and there was a pool of blood. That happened three or four times before I had to go into work,” says Spill. The next morning, it happened again.
Spill went to the emergency room despite not having health insurance to cover the bill. Once again, her blood tests were normal. The physicians were reluctant to recommend expensive scans that Spill would have to pay for out of pocket, particularly when they learned she’d recently given birth. They also suggested that the problem was likely internal hemorrhoids
They told her to stay away from spicy foods, which can aggravate hemorrhoids.
Finally, she went to a family care clinic. She got no more answers there. But she did have an encounter that would lead to an answer. “One nurse said, ‘Even when you leave this place, if you still feel like something is wrong with your body, keep trying to figure it out.’”
Spill did feel like something was wrong, and, following the nurse’s advice, she kept trying to figure it out. Finally, she found a primary care physician who referred her to a gastroenterologist, who performed a colonoscopy.
“That's when I found out that I had a huge tumor. He knew it was cancerous, but he couldn't say it on record until the test came back,” Spill recalls. She got the call on a routine Walmart run. At 28, Spill was diagnosed with stage 3 colorectal cancer, right there in the diaper aisle.
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Colorectal Cancer Is Now Also a Young Person’s Disease
Colorectal cancer develops in the large intestine, known as the colon, which consists of the final section of the digestive tract and the rectum, which makes up the last several inches of the colon, according to the Mayo Clinic. Historically, colorectal cancer has been considered a disease of middle-age, with 90 percent of cases occurring in people over age 50.
But, increasingly, patients look a lot like Spill.
Colorectal cancer is now the third leading cause of cancer death in young adults. In fact, about 20 percent of people diagnosed with colorectal cancer are between ages 20 and 54, according to the Colon Cancer Coalition. Compared with people born in 1950, people born after 1990 are twice as likely to develop colon cancer and four times as likely to develop rectal cancer, the coalition reports.
Doctors are still piecing together why this is. Researchers are looking at certain environmental exposures, such as food additives, stress, inflammation, and even overuse of antibiotics during childhood, as potential causes for the significant jump in colorectal cancer risk in the younger population in just one generation.
Some believe it may have something to do with changes in the gut microbiome caused by eating a diet high in processed foods, which are difficult to avoid in today’s food system.
“Many people have attributed it to obesity, metabolic syndrome, or diabetes, but we don't think that's playing as much of a role as people thought, because there are a lot of people who are getting colorectal cancer who don’t have these comorbidities,” says Folasade P. May, MD, PhD, an assistant professor of medicine at the University of California in Los Angeles. “It is our big mystery.”
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Diagnoses in Young People Often Happen Too Late
What many experts including Dr. May do know for sure is that colorectal cancer should no longer be treated as a disease found only in older adults. Unfortunately, not every doctor knows about the change in risk patterns, and stories like Spill’s are not uncommon.
Spill’s best friend met someone in graduate school who was diagnosed with colorectal cancer at age 27.
“She had a similar experience with having to go from doctor to doctor before being taken seriously,” says Spill.
May says she wants patients to feel empowered to seek a second opinion and to know that if they believe something is wrong, they should continue to look for a doctor who will look into the situation further.
“It's your life. You need to feel empowered to bring this up time and time again. And if you feel that a doctor isn't addressing your issues, you have the right to see another,” says May. “We need to not just assume that just because a person is young, or because a woman just had a baby, that it's something benign like hemorrhoids. Anyone who is having symptoms should have a colonoscopy.”
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What Symptoms Should Young People Be Aware Of?
According to May, many people don’t have any symptoms until their colon or rectal cancer has reached a late stage, but there are a few telltale signs to watch for.
Blood in your stool is a common symptom of colorectal cancer. Other symptoms include ‘pencil stool,’ which is long and thin, potentially because a tumor is constricting the colon or rectum, as well as cramping, abdominal pain, and new diarrhea or constipation. Decreased appetite, fatigue, and weight loss typically don’t occur until colorectal cancer is in an advanced stage, says May.
She implores young women, especially, to advocate for themselves if they think something wrong, because there are issues that make it easy to dismiss symptoms in this population. In women, some warning signs of cancer, such as anemia, may be attributed to pregnancy or menstruation. “A lot of women have low blood counts or anemia because of menstruation, and their primary care doctor makes the assumption that it’s the culprit. Meanwhile, there are many causes of anemia, including blood in the rectum.
“If you are concerned that you may have colorectal cancer, talk to your provider in earnest. Tell them that you have heard about this disease and you want to make sure you aren't having the symptoms. “If you have tried that a couple times and your doctor still doesn't want to send you for a colonoscopy, you should feel empowered to ask for a second opinion,” says May.
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A Happy Ending
Spill says the weeks after her diagnosis, as she visited different cancer treatment centers, felt as though she had been picked up by a tornado and set down in chairs in different offices throughout New York and New Jersey.
“I got pushed and shoved to all these different scans. We talked about my future and what would be happening. We talked about doing oral chemo for six months and radiation for six months, and freezing my eggs before starting treatment,” says Spill.
Before she started chemotherapy at Memorial Sloan Kettering Cancer Center, Spill’s doctors tested her tumor for a mutation that would qualify her for a clinical trial of an immunotherapy drug the center was overseeing.
It was positive. Spill became the fourth person in the United States to try the therapy, which has far fewer side effects than traditional radiation and chemotherapy, and it preserved her ability to conceive in the future.
She was scheduled for nine treatments over the course of six months. By her fourth, the tumor had shrunk by half. It was then that her doctor told her that the therapy had completely cleared the tumors in the three other women enrolled in the trial. By the final treatment, her tumor had completely disappeared.
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