Treating Generations of Families with Colorectal Cancer

Having a rapport with kids is not something that immediately comes to mind when thinking of a colorectal surgeon, but when treating hereditary colon cancer, it’s a critical part of the job. “Before I was even a doctor, I had an instant bonding with kids,” says James Church, MD, director of the Hereditary Colorectal Cancer Center at Columbia University Irving Medical Center. “I know how to handle children even though I'm not a pediatric surgeon.” 

Before exiting retirement to join the team at Columbia in 2021, Church spent 30 years at the Cleveland Clinic, building and leading one of the most reputable colorectal divisions worldwide. One of his previous (and favorite) mentees, Ravi P. Kiran, MD, now chief of the Division of Colorectal Surgery at Columbia, convinced him to move to New York and pass on his vast expertise to a new generation of surgeons.

“Colorectal cancer is an unusual cancer,” says Church, professor of surgery at Columbia University Vagelos College of Physicians and Surgeons. It’s quite common—falling just behind lung cancer and breast cancer as the third most common cause of cancer deaths in the United States— but unlike other cancers, “We have access to the pre-cancer stage.”

“Every colon cancer starts off as a benign polyp, every single one,” he explains. With colonoscopy screening, polyps can be found and removed before they become cancerous. Even if not found in time, cancers can be identified and treated before they cause symptoms, something especially important for those with hereditary disease.

About 5% of people who develop colorectal cancer have inherited gene mutations that cause the disease. The two most common inherited colorectal cancer syndromes are Lynch syndrome, which develops into cancer with relatively few polyps, and familial adenomatous polypsis (FAP), in which carriers develop hundreds or thousands of polyps in their colon.

Although hereditary colorectal cancers account for a very small percentage of colorectal cancer cases, for families carrying the gene, Church says, “It’s extremely significant.” The syndromes are dominantly passed down meaning if a parent has it, their children have a 50/50 chance of getting it.

During his tenure at the Cleveland Clinic, Church oversaw a registry of families with hereditary colorectal cancer that allows coordination and integration of care for affected adults and children in all stages of disease. Over the course of his career, he has worked with thousands of families with FAP. He has treated “some of the most tricky, most difficult cases,” sometimes up to four generations of a single family at a time.

“Quite often in the summer holidays, Mum and Dad and the kids would come and have a couple of days in Cleveland,” he says. “They’d see the Rock & Roll Hall of Fame, catch the Guardians game, and then come and have their colonoscopies and their other tests and go home. And then they might come back for surgery if and when they need it.”

Eventually, almost everyone with FAP has surgery to remove the colon (colectomy); there are simply too many polyps to remove successfully with colonoscopy. And 70% to 100% of people carrying the gene will develop cancer at some stage. “It’s not a matter of do they need surgery,” Church says. “It’s a matter of when is the surgery going to be done, and what kind.’'

For young patients and their parents, surgery can be scary to contemplate. “To take a 13-year-old child and take their colon and rectum out and give them a bag and send them off to school—that’s not good,” says Church. “We’re guided by the governing principle that we aim to prevent death from cancer. But very close behind is the priority to maintain as normal a quality of life as possible.”

That means tailoring treatment to consider the patient’s age, their emotional, physical, and academic needs, the financial implications for the family, and the severity of the disease. This is where a natural connection to children proves helpful. “I must have a kind face,” says Church, “because I don't frighten the children. I talk to them and take it the way that that particular child wants to go…and I never hurt them.”

Communicating effectively with parents, who are often even more anxious than their children, is another necessary skill. “I know what it’s like to be the father of a sick child and the thoughts that go through your head,” he says, “so I think I can relate to them fairly well.” When tough choices must be made, Church works with the parents to settle on something that makes sense for the family, a treatment plan that adheres to a quality of life they determine together.

“It’s really a privilege to be involved,” he says. “You become part of the family.” He recalls one of his first patient families in Cleveland, a trio of siblings who all needed pouch surgery in the early 1990s. Years after successfully performing their surgeries, Church operated on some of the siblings’ children.

A son of the second generation had a daughter, “a little girl who was a really good gymnast.” When she was 8 years old, a botched colonoscopy procedure in another city resulted in an emergency operation and a colostomy bag. The family turned to Church for help; he was able to repair her colon, remove the colostomy bag, and oversee her care for the next several years.

Today, that little girl is 20 years old, and she and Church remain very close. As she has dealt with additional health challenges over the years, Church was by her side. “There are several photos of me sitting on her hospital bed,” he says. “She even made me a T-shirt that said ‘Best Doctor.’”

In addition to managing patients’ physical health, Church emphasizes how critical it is to provide and prioritize emotional and psychological support for families with hereditary colorectal cancer. “Imagine that you know you're going to get cancer at some time,” he says. “Every year, you're coming for several checkups, colonoscopy scopes here, there, and everywhere, scans. And then you get the results, and you're worried about your family, and you're worried about your children.”

In 2019, Church and his daughter, Emma Wood, PsyD, co-authored a study about the mental health effects of FAP. They found that psychological conditions were present in about 70% of patients surveyed, and 18% of patients had symptoms of PTSD. Six out of 100 patients had dealt with suicidal thoughts. But only 10 out of 100 patients had been offered psychological help at any point during treatment.

“These patients go through terrible anxiety, and it’s unrecognized by doctors,” says Church. After completing the study, he hired a psychologist to join the Cleveland Clinic team that managed FAP patients. This treatment model became the blueprint for the program he is building at Columbia, too.

Church is not a fan of the self-accolades or as he calls it, “horn blowing.” He declares he is simply doing his job as a surgeon and human being. But the comments on an interview from 2016 alone make it clear what an impact he has had on these generations of families. One person wrote, “He helps restore quality of life which often overshadows quantity of life.” Another said, “I am one of them who got to live my life and see my daughter grow up because of him.”

In his new role at Columbia, Church is recreating his decades-long approach to generational care, rooted in empathy and understanding before all else, and backed by virtually unmatched surgical expertise.

“Being compassionate is not a weakness," Church wrote recently in a column for the journal Diseases of the Colon and Rectum. "It is as much a part of the care of sick people as antibiotics, chemotherapy, and surgery.”