Kristen Van de Geer was just beginning to feel like she had figured herself out when she was diagnosed with rectal cancer. She had finally found a treatment for the depression that she struggled with her whole life. She was entrenched in the community building a youth center for the small Alaskan town where she and her husband had moved just a few months ago. She was only 41.
Kevin Cooke, who had only recently sent his eldest son off to college in Troy, New York, was diagnosed with colon cancer at 49. And Don Carpenter just landed a new job which he loved when he was diagnosed at 49.
These stories are becoming more common as the rates of colorectal cancer (the umbrella term for all colon and rectal cancers) continue to rise among adults between 20 and 49. Rectal cancer rates are expected to double in this age group by 2030 and colon cancer prevalence is expected to jump by about 28%. Kalen Fletcher, MSW, MPH, the clinical social worker in Dana-Farber Brigham Cancer Center’s Young-Onset Colorectal Cancer Center, says that getting diagnosed with cancer during this stage in life poses unique challenges. Young adults are often beginning their careers, raising families, or caring for aging parents.
As one of the only centers in the country with this focus, the Young-Onset Colorectal Cancer Center seeks to address these unique challenges through specialized expertise in research, treatment, and social support. It is with support from Fletcher and the center’s clinicians that Van de Geer, Cooke, and Carpenter found coping strategies and meaning throughout their diagnosis and treatment.
The shock and what-ifs of diagnosis
Many adults under 50 aren’t considered at risk for cancer generally, and don’t experience noticeable symptoms right away. If they do have symptoms, Fletcher says that they are often written off by physicians as irritable bowel syndrome or hemorrhoids.
“It can feel like being gaslit,” she says.
Cooke, a bespectacled father of three who is quick to smile, didn’t get evaluated for cancer until he almost passed out in the shower in his home in Duxbury, Mass. Heading to the hospital, he thought he would just get a quick infusion of electrolytes. But his care team found out he was anemic, which led to a colonoscopy and the discovery of a mass in the rectum.
On his first visit to Dana-Farber, holding his wife’s hand, Cooke was in disbelief.
“I’m too young to be here,” he thought. Months later, as he was being treated, his mind raced with what-ifs. What if he had had a colonoscopy sooner?
Those questions also ate at Carpenter, a Boston-area local sporting a thick beard with streaks of grey. “How could they have missed this?” he asked. “Why did they make me wait so long for a colonoscopy?”
Van de Geer had to advocate for herself in the face of providers in Alaska, who didn’t believe her concerns were serious given her age. She struggled with digestive issues and considering her mother had died of gallbladder cancer five years prior, she requested a colonoscopy. Several gastrointestinal specialists told her it wasn’t necessary. Eight months later, a physician agreed to do one. They found a mass and Van de Geer was diagnosed with rectal cancer.
Responsibilities put on hold
A longtime teacher in Weston, Mass, Van de Geer had to find a new career when she and her husband moved to Ketchikan, Alaska for her husband’s new Coast Guard assignment. It was a challenge: Ketchikan is a small town, and they moved just as the COVID-19 pandemic began. But the nonprofit role she eventually found filled her with purpose. “I’m thriving,” she remembers thinking.
After her diagnosis, Van de Geer joined her sister in Maine to be closer to the quality care at Dana-Farber. That meant leaving behind the work that she had fallen in love with.
During treatment, Cooke felt like he had to forego his role as a husband and father who provided for his family. It was a role that he had always been proud of, and he didn’t want to be a burden.
Carpenter worried about the new job he just landed. It had only been eight months, and now he had to go on medical leave. He was sure that he’d be let go. “I was very cynical about it,” he remembers. Treatment took him away from his clients and the regular business trips up to northern Vermont, a region he loved for its natural beauty.
Many of the patients Fletcher sees experience shock, she explains. For younger patients, that can be exacerbated by an inability to complete life goals in their professional, romantic, and family lives.
“They feel like they need to put many aspects of life on pause during a time when things are typically moving forward,” Fletcher explains.
Anger
For Carpenter, the months after diagnosis were marked by an “emotion a minute.” He was angry with his primary care physician for not setting him up with a colonoscopy sooner, and he was angry with himself for not pushing for it. Cancer took him out of the gym where he worked out religiously. It all felt unfair, he says.
He remembers sitting in the parking lot right after getting his diagnosis and watching two young women get into their convertible without a care. “God, if I could just go back,” he thought to himself.
Cooke remembers a lot of yelling in his car. “You just need that outlet,” he says. It was difficult to accept that this was happening to him even though he did everything “right.” He worked hard, was there for his family, and went to regular check-ups, but was still diagnosed.
Van de Geer felt angry about the way she was ignored by her primary care physician. It delayed her diagnosis. Later at Dana-Farber, her surgery and chemotherapy posed new challenges. She was always tired, nauseous, and with a section of her intestines removed, she had to adjust to a new digestive schedule. There were days when she yearned for her past, healthy life in Alaska, and struggled with her new identity as a survivor.
Accepting uncertainty
Cooke faced several obstacles in his treatment, including a gallbladder malfunction and an unexpected metastasis. But every time he received a worrying result, his team at Dana-Farber had an answer and he learned to accept the uncertainty of everything. “It’s like predicting the weather,” he says about his cancer.
Speaking about his diagnosis with Fletcher helped Cooke to realize that as frightening as it is, it’s not the end. During their first session, he remembers venting non-stop, an immensely helpful practice, another outlet.
Now on the other side of treatment, Cooke has reframed his outlook. He cherishes small things that he once might have found tiresome, like setting up an Elf on the Shelf with his daughter. “It’s kind of like a rebirth,” he says.
Treatment at Dana-Farber reconnected Van de Geer with her sisters, nieces, and nephew in New England. She’s their favorite “Auntie KK”, the fun aunt who coaches soccer teams and spends hours playing Mario Kart. Her return to the region she loves for its shifting seasons and her old friends brought her joy. “I felt embraced this last year,” she says. “In ways that I never predicted.”
Van de Geer says that meeting with Fletcher helped her to realize that her feelings of anger and fear were normal. She also regularly saw a Buddhist meditation teacher who taught her that everything is temporary, including the nausea caused by chemotherapy and the anger at being diagnosed. She and her husband have recently moved back to Massachusetts with their two cats. With chemo behind her, Van de Geer is focused on moving and recovering with trips to the gym and eating healthy.
Carpenter’s employers gave him their full support. They told him, “Whenever you’re ready to come back, just let us know.” Having finished chemotherapy in February, he is back fulltime and loving his work more than ever. He’s also back in the gym, close to his bench press personal record of 225 pounds.
He credits Fletcher and his wife for getting him through moments of doubt and anger. They offered new perspectives and moments of gratitude. When he returned to Vermont, he visited an old swimming hole carved out of rock by a fast-flowing river. Surrounded by nature and laughing swimmers, he thought, “It’s all gonna be okay.”
These young survivors admit that they still have their days of doubt. But with support from their care team, their families, and friends, they’ve found their own paths forward. Cooke boils it down to this: “If you live in fear of the unknown, you miss out on the blessing of today.”