Katie Rich chalked up the ache in her ribcage to lingering pains from childbirth. At 33 years old, Ms. Rich had delivered Brady, her third child, just eight weeks earlier, but she felt strong and vital. Her doctors thought a minor gallbladder issue might be the culprit and sent her for a sonogram. The technician told Ms. Rich the results wouldn’t come until the following week.
Just minutes after she left the appointment, Ms. Rich’s cell phone rang. The scan had revealed suspicious masses. During the whirlwind week that followed, Ms. Rich was diagnosed with stage IV cancer of the colon, the nearly six-foot-long digestive organ that is attached to the rectum. Cancers found in the two organs are grouped together under the umbrella of “colorectal cancer,” which is the third leading cause of cancer deaths in the United States among men and women. With three young children at home, including a newborn, Ms. Rich was suddenly battling for her life.
“I knew nothing about this at first,” Ms. Rich says. “My husband and I were so thrown. I thought colorectal cancer was an old man’s disease.” As a woman in her early 30s, Ms. Rich was decades younger than people who typically have colorectal cancer, usually men in their 60s or 70s. She had no family history of the disease, ate carefully, and enjoyed a healthy, active lifestyle befitting a former college volleyball player. And she had none of the typical symptoms of colon cancer.
What Ms. Rich didn’t know when she was diagnosed in 2012 was that she was part of a disturbing and puzzling new trend. A growing number of people in their 20s, 30s, and 40s — both men and women — are developing colorectal cancer, with no genetic predisposition and few obvious risk factors. Researchers call this early-onset colorectal cancer, to distinguish it from the more common occurrence later in life. What’s more, people in this age group face wholly different obstacles from older people diagnosed with the disease, including fertility issues and dealing with long term effects for decades.
In response, Memorial Sloan Kettering is fighting back by launching the Center for Young Onset Colorectal Cancer — the first in the country dedicated to these younger patients. Its three-part mission is to figure out what’s contributing to the rise in early colorectal cancers, make the general population more aware of this troubling development, and help MSK’s younger colorectal cancer patients cope with the unique challenges they face.
MSK’s expertise and high volume of colorectal patients — 1,250 each year — helped our doctors spot this alarming trend early. “I would say five or six years ago, we started to see younger patients with colorectal cancer, including people in their 20s and 30s, that we weren’t seeing before,” says Julio Garcia-Aguilar, Chief of the Colorectal Service. “We got the impression that something was happening. And we started talking about it.”
Research at MSK and elsewhere identified a growing number of people diagnosed with colorectal cancer before age 50. This distinction is critical because 50 is the age when guidelines recommend colonoscopies to screen people at average risk, meaning they have no family history of colorectal cancer or chronic conditions like ulcerative colitis that could make them more likely to get the disease.
Then, in early 2017, the American Cancer Society released a startling study. It found a sharp rise in colon and rectal cancers in adults as young as their 20s and 30s. The study concluded that a person born in 1990 had double the risk of colon cancer and four times the risk of rectal cancer as a person born in 1950 did at the same age. But researchers were puzzled by what was behind the trend.
Even more troubling, the study found a small but unmistakable rise in the death rate of younger people with colorectal cancer. Experts believe one factor is that their symptoms are often dismissed until the cancer has become advanced, when it’s harder to treat.Back to top
Treating the Whole Person
This was true for Ms. Rich, who became a patient at MSK in 2012 when she sought a second opinion for treatment of her stage IV colon cancer. Under the care of medical oncologist Diane Reidy Lagunes, Ms. Rich received eight rounds of chemotherapy. Surgical oncologist Martin Weiser removed 30 percent of Ms. Rich’s colon, and surgeon Peter Allen removed 70 percent of her liver, where the cancer had spread.
Ms. Rich’s grueling recovery lasted months. Then she stunned her medical team with a new twist: She was pregnant. “My husband and I were shocked, to put it mildly,” says Ms. Rich. Pregnancy would complicate efforts to see if the cancer returned, and if it did, treatment options would be limited. That reality “forced my husband and I to make one of the hardest decisions we’ve ever faced,” she says. “I had three little kids at home already. So do I jeopardize those kids having a mother for a fourth child?”
In the end, they decided to carry the pregnancy to term. Daughter Hope was born, happy and healthy, in April 2015.
Pregnancy and fertility issues are just some of the unique challenges faced by younger adults with colorectal cancer. “Being told you have colorectal cancer is difficult for people at any age, of course,” says medical oncologist Andrea Cercek. “But in younger patients, their ability to process it is very different than patients in their 60s and 70s, who have had careers, experienced a lot of life, and have established social support systems.”
Treatment for colorectal cancer can cause incontinence, diminished sexual function, profound changes to body image, and other psychosocial issues. Dr. Cercek stresses that “many of our younger patients either wish to have families or are not quite there yet in their lives, so it’s really important to have conversations about family planning and fertility preservation. Sexual health is important for patients who are older too, and everyone needs support. But for our younger patients it’s even more necessary to intervene early.”
MSK’s new center intends to do just that. The plan is for younger people with colorectal cancer to be assigned a guide, who will lead them through the support services offered by MSK and keep their care team in the loop with MSK social workers, psycho-oncologists, nutritionists, fertility and sexual health experts, and more.
Much of this support is already part of the MSK experience. But the center aims to expand it, tailor it to younger patients, and make it easier to access during the confusing rush of treatment.Back to top
The Research Effort
A major focus of research for MSK will be figuring out what’s leading to the increase in colorectal cancer in younger people. Gastroenterologist Robin Mendelsohn helped spearhead an investigation of patient records and found that over the last decade, MSK treated nearly 4,000 people with colorectal cancer who were under 50 years old.
But this trove of data raises as many questions as it answers. “We know risk factors for colorectal cancer include obesity, smoking, and alcohol consumption,” says Dr. Mendelsohn. “But the younger patients we treated actually had lower rates of risk factors, including obesity, smoking, and drinking, than their peers who did not develop cancer.”
Concerns about the Western diet, high in animal fats and sugar, have also proven difficult to pin down. This is in part because colorectal cancer among younger people is rising all over the world, including in Europe, Asia, and Africa, where typical diets vary.
So what is going on? Dr. Mendelsohn says one potential area of the center’s research efforts will be the microbiome, the complex community of bacteria, fungi, and other microbes that live in our bodies and help us digest our food and regulate our immune system. “Research suggests that changes in the microbiome can be associated with cancer,” she says, “and we will investigate what may be affecting the microbiome now that is different than 30 or 40 years ago.”
Researchers will also look closely at genetics. So far, a family history of colorectal cancer has not been linked to the sharp rise in the disease among young people. But the center hopes to screen siblings and family members of patients to see if there are genetic secrets to unlock.
Because this phenomenon is so new, however, long-established treatments for the disease require fresh study. As Dr. Garcia-Aguilar points out, “giving therapy, such as radiation, to a patient who is 21 is very different than giving it to someone who is 60. We need to follow young patients for a long time to see how different treatment options affect them over time. That’s a unique challenge.”Back to top
Ms. Rich is looking forward to celebrating five years of being cancer free. “It’s like my family has settled back into normal, where cancer isn’t so much the focus,” she says. She returned to work in September, teaching math to seventh and eighth graders. And she’s jumped back into her family’s swirl of activity as well as joined MSK’s fundraising event Cycle for Survival to raise money for and awareness of cancer. Dr. Mendelsohn, who is part of Ms. Rich’s care team, calls her “a superwoman, the poster child for younger people with colorectal cancer.”
As for the new center, Ms. Rich says it’s just what the doctor ordered. “There’s a huge need,” she says, “especially an emotional need. You are just going through so much, and it’s so intense. You can’t do this alone. You need help.”Back to top