As she sat in her doctor’s office with 9-week-old baby Oliver beside her, Chelsea Boet, MD, got news no young mother expects.
The sharp abdominal pains she’d been feeling for the past few days came from metastatic colon cancer, which had already filled her liver with tumors. As a doctor, she knew the grave implications of a stage IV diagnosis. Still, it didn’t compute.
“I just sat there, thinking `Nope. That’s not the right answer. Pick something else.’”
She began treatment immediately at Spectrum Health Cancer Center.
She had another advantage, too: A rock-solid belief in the power of a strong support system. Even before she left the hospital, she joined Colontown, an online community of some 4,000 people facing colon, rectal or anal cancer. Subcommunities, called neighborhoods, make it easy for people with common issues, like raising young kids or specific treatments, to find one another.
“It focuses on empowerment and being educated about your diagnosis, having a plan and being part of the decision making,” she said. And while that’s how Boet, a pediatrician and internist in Grandville, Michigan, works with her own patients, it was gratifying to feel it from the other side, too. “Having that support and encouragement from the get-go was really helpful.”
Grief-stricken at the possibility of leaving her husband a young widower and not being able to watch Lillian, then 3, and baby Oliver grow up, she quickly made a special connection with another woman with metastatic colon cancer. Like Boet, she had been diagnosed while her son was an infant, and seven years later, is going strong. Of course, Boet would prefer a cure.
“But it helps me to see you can live with this and be part of your kids’ lives for a long time,” Boet said.
Help poured in for her and her husband, Peter, from her parents, in-laws, friends and family, but the community, as well. When cancer medication meant she could no longer nurse Oliver, local moms stepped up with breast milk donations; others delivered meals so the family wouldn’t have to cook.
A strong support system makes a difference. Researchers have found that people with colorectal cancers with less support are three times more likely to become clinically depressed and that social and emotional support, especially in a strong marriage partner, may even boost survival rates.
Before long, Paltown, the organization that runs Colontown, asked her to join its board of directors, a first for her, and she’s excited about helping it expand to other cancer communities as well.
Tapping her team
Joining Colontown was just the start of her virtual support system.
Peter set up a blog, posting updates on her progress, and explaining each phase of her treatment.
“Initially, we just couldn’t make ourselves tell the story over and over, repeating how bad this was,” Boet shared. “I was very, very, very ill, so it was an effort to keep people up-to-date.”
The blog has also become a vital privacy wall, giving the couple time to process what is happening to them before sharing it with other people.
While colon cancer—America’s third most common and third most deadly—is still far more prevalent among older adults, there has been a sharp rise of the disease in young adults recently. After years of progress, experts now say millennials like Boet face colorectal cancer risks as high as they were a century ago.
That’s led the American Cancer Society to lower the age of screening recommendations to 45.
Family history matters, too, since experts now believe genetics are linked to between 5 and 10 percent of colon cancers. Several members of Boet’s extended family have had the disease. One aunt, who is now cancer-free, has calculated the family’s rate of colon cancer as three times higher than the national average.
Boet is passionate about educating others. At a Colontown workshop, she discovered the power of Twitter as a communication tool. She loves the way many doctors use the social media platform, instantly connecting her to many different experts who are offering evidence and sharing data about new treatments, as well as calling out misleading claims.
“There are internationally-known oncologists who are chitchatting on Twitter, talking about what’s new and effective. It’s a goldmine. Besides,” she said, “it’s hilarious.”
Paying it forward
She looks for smiles anywhere she can, especially for memes and jokes she can scroll through on chemotherapy days. On the (many) days she feels miserable, she zooms in on gratitude, even when the kids are a handful and she’s battling aches and nausea.
“No day is a given, we know that. We remind ourselves to really appreciate those snuggles,” she said. Oliver has just started saying mama, “and every time he does, and every milestone, feels like a victory.”
Her treatment has been intense, including an allergic reaction to one medication, and a surgically implanted pump that infuses chemo directly to her liver. Another treatment involved placing radioactive beads inside an unresponsive tumor, which meant she had to stay 3 feet away from everyone for five days. (Try explaining that to a toddler.) And, discouragingly, tumors have spread in her liver, although her doctors believe they will soon be able to remove them.
The experience has intensified her commitment to advocacy, sharing as honestly as she can about the journey.
“Chelsea is such an inspiration to me,” says G. Paul Wright, MD, her surgical oncologist. “She has faced incredibly challenging circumstances over the past year, however, she is always cheerful and motivated. She’s become an amazing advocate to support others and has quickly become a leader in the colon cancer patient community.”
“People listen because my story is a sad one, and I am both lucky and unlucky enough to be able to tell it,” she says. “I have high expectations that we can change the way we approach colon cancer. And I’m really motivated to be part of that movement.”