Damien Scogin knew colorectal cancer could be immensely cruel. A close friend of his died of the disease after she was diagnosed in her late 30s. Her urging that friends get colorectal screenings spurred him to insist on a colonoscopy in his mid-40s after he experienced mild symptoms that were chalked up to other conditions.
But no one is ever prepared to learn they have cancer. Damien says, “I’m a huge outdoor sports enthusiast. I’ve always stayed very fit and eat a low-risk diet that is more or less vegetarian.” When the colonoscopy revealed he had advanced colon cancer, “it was like a hammer hit me in the skull,” he says.
Damien is part of a disturbing trend: a persistent rise over the last several years of people under 50 developing cancer in the colon or rectum. Malignancies in these two connected digestive organs are called colorectal cancer. Typically, this cancer occurs in people in their 60s and older. But research shows the number of cases is growing in people as young as their 20s and 30s — and the death rate from colorectal cancer for people ages 20 to 54 rose between 2004 and 2014 after previously declining. In fact, cases of colorectal cancer in people under 50 are expected to nearly double by 2030.
The First Center in the World for Younger Adults
To help, Memorial Sloan Kettering established the Center for Young Onset Colorectal Cancer in 2018. It is the first center in the world devoted to people with colorectal cancer under 50. One of its aims is to help address the specific concerns of younger adults, including dating and intimacy, sexual health, fertility, financial and employment challenges, mental health, and the impact of cancer on the whole family.
Robin Mendelsohn, the co-director of the center and a gastroenterologist, explains, “When a person is diagnosed with colorectal cancer, it’s overwhelming. They don’t always know what questions to ask. That’s where the center comes in.” When patients under 50 with colorectal cancer make their first appointment, they are immediately flagged to be contacted by the center, to reassure them they are not alone. Before their first visit, they are sent a welcome letter that gives an overview of the center and highlights the support services and resources available to them — social work, nutrition, fertility, sexual health, psychiatry, genetics, and integrative medicine.
Within a week of their first consultation with an MSK doctor, patients are contacted by the center’s dedicated clinical social worker Hadley Maya. She says the people she counsels often face concerns specific to their stage of life. “Many are balancing various responsibilities from jobs and careers, caring for children and teenagers as well as aging parents, and many are navigating robust social lives.” She continues, “They want to know: How do I tell my family, friends, boss, and colleagues? How do I balance work and treatment, especially if I rely on work for health insurance? How do I support my family?”
Younger patients in their 20s and 30s have many of the same concerns. “They are often also concerned about starting or adding to their families or finding a partner and navigating dating and intimacy,” she says.
Caring for over 1,000 Patients
Ms. Maya met with Damien and his wife, Nina Bellisio, for counseling shortly after Damien’s first appointment with his MSK oncologist Anna Varghese. Ms. Maya and Damien have worked together ever since. Damien says of Ms. Maya, “It’s so great to have a neutral ally in all this. I can talk to her and not have to put all this burden on my wife of processing what I’m going through because obviously it is really challenging and sometimes deeply depressing. I’m really grateful Hadley is there.”
One of the biggest stresses for Damien was how to talk about cancer with his daughter, Jane, now 9. Damien says, “Telling your elementary school age child that you might be dying is the worst thing I’ve ever experienced in my life. Seeing the look in her eyes was just gutting.”
Ms. Maya says that talking to kids about cancer is one of the top concerns among people she works with. “MSK has developed a real expertise in counseling parents with cancer about how they can talk to their children to help the entire family during one of the most stressful experiences in life. The people I work with say they find the support and resources that we offer are really helpful.”
That expertise comes from experience. By March of 2021, three years after its founding, the center had cared for over a thousand people under 50 with colorectal cancer. Damien says: “It was such a relief to not have to explain things. Everyone just understood what was happening. Everything was so well integrated.” He adds that when he developed the common side effect of neuropathy, “I could just immediately go into acupuncture at MSK, which really helped. Everything I needed was taken care of. MSK and the Center for Young Onset Colorectal Cancer should be the model for all healthcare.”
Unlocking the Puzzle
Another pillar of the center is finding out what’s causing this troubling rise in colorectal cancer among young people. Dr. Mendelsohn explains, “We don’t know why this is happening. The goal of our research is to first understand the risk factors so that we can identify a group to screen to try to decrease the incidence of colorectal cancer in this young population.”
The center has also identified another group of younger adults who deserve attention. It turns out that in addition to colorectal cancer, there is also a rise in gastrointestinal cancers overall in younger people, particularly cancers of the pancreas, esophagus, stomach, liver, and other parts of the digestive system. To help, the center is expanding to become the Center for Young Onset Colorectal and Gastrointestinal Cancer. This will bring the center’s expertise in caring for younger adults to more patients in need.
As for Damien, two years after he was diagnosed — and several rounds of chemo and surgery — his stage IV cancer is now classified as NED, meaning no evidence of disease. He and his doctors will remain vigilant against recurrence. And Damien intends to make up for lost time in spending time outdoors, particularly with his family.
For other people facing a diagnosis like his, Damien’s advice is to seek out the sense of community and support he found at the center. “Cancer is such a dramatic departure from normal life,” he says. “Don’t try to manage on your own. Take advantage of resources that are out there. It really helps.”