Crafting an Inspiring Survivorship From Stage IV Colorectal Cancer 

When Clelia Lavoie, then 49, began experiencing abdominal pain in 2019, she had a feeling it was something serious despite dismissals from her doctor. Lavoie’s intuition was right. A colonoscopy led to a diagnosis of stage IV colorectal cancer that had metastasized to her thyroid, back, and liver. She needed surgery to remove part of her large intestine as well as extensive chemotherapy. 

Along the way, something unexpected happened. Seeking diversions while on leave from her job, Lavoie taught herself to sew as well as to grow and care for succulent plants. These new hobbies unleashed a passion for art and advocacy, and Lavoie was soon sharing potted succulents and handmade face masks with her clinical team and fellow patients at Dana-Farber Cancer Institute at Boston Medical Center – Brighton. She even donated 175 of her handmade masks to Boston Children’s Hospital for use by pediatric patients during the COVID-19 pandemic. 

“I just wanted to keep busy with my hands, my mind, and my brain during treatment, so I didn’t sit around feeling sorry for myself,” explains Lavoie. “YouTube was my teacher.” 

Long-term survivorship with stage IV colorectal cancer – that which has spread to at least one other organ not near the colon – has risen in recent years due to increased treatment options for individuals with advanced disease, including clinical trials and targeted therapy. For Lavoie, this means more time with her husband, Claude, her three adult children, and other loved ones, along with the opportunity to share her newfound creativity and promote positivity and early detection. 

“The surgery changed my life, in that I have to think about where I’m going, what I’m eating, and how I’m digesting it,” says Lavoie, who lives in Taunton, Mass. “It’s been really challenging, but I’m still experiencing all that I can. And if I can do it, others can, too.” 

Drive to Diagnosis 

Lavoie’s introduction to Dana-Farber – Brighton actually came well before her diagnosis. Her mother, a native of Guatemala who raised three daughters in the Boston area, was previously treated at the facility for advanced breast cancer. 

“The very personable attention my mother received was wonderful,” says Lavoie. “She was  told she had very little time left when she was diagnosed, but she outlived that by 10 years. They did so much for her.”  

Her mother’s experience made a deep impression on Lavoie. After she developed benign cysts in her liver and one kidney, she began having her annual imaging and blood work reviewed by oncologist Olga Kozyreva, MD, associate medical director of Dana-Farber – Brighton to make sure they remained noncancerous. 

Then, in early 2019, Lavoie had another type of health scare.  

“I started having a pulling-type of pain that shifted from left to right in my abdomen,” explains Lavoie. “My PCP kept dismissing it, telling me I just needed to eat better and lose weight. Even when I developed a new iron deficiency, and the abdominal pain persisted, she didn’t recommend further investigation.” 

Lavoie decided that a phone call with Kozyreva was no longer enough, and made the long drive to Brighton to see her in person. 

“I told her how I was feeling, and Dr. Kozyreva said, ‘Let’s get a colonoscopy right away,’” Lavoie recalls. “When we learned it was cancer, she told me the tumor had been in her intestine for a while. If I had not gone in, I wouldn’t be here now.” 

The fact Lavoie was in her late 40s, Kozyreva says, may be why her primary care physician did not suspect cancer.  

“Clelia’s story is not uncommon, it’s a warning,” says Kozyreva. “The rise in cases of early-onset colorectal cancer demands a shift in how we listen, how we screen, and how we trust patients’ instincts. Age should never be a reason to dismiss persistent symptoms. The notion that cancer is a disease of the old is not just outdated, it’s dangerous.” 

The uptick in incidence seen by Kozyreva and other oncologists is why the Young-Onset Colorectal Cancer Center was created at Dana-Farber. The center is dedicated solely to treating colon and rectal cancer in young adults like Lavoie diagnosed before age 50. By 2030, colon cancer incidence is expected to double in this age group, and rectal cancer to quadruple.  

Remission and Resilience 

Three months of chemotherapy, surgery, and then more chemotherapy in 2019 and 2020 followed Lavoie’s diagnosis. Along with art, she credits the support of her family and the care provided by Kozyreva and her entire clinical team for helping her stay upbeat. Within a year, her cancer was in remission. 

“Clelia’s outcome, once considered rare, is becoming more possible thanks to advances in colorectal cancer treatment,” says Kozyreva. “Her case also challenges outdated assumptions that Stage IV is a sentence, not a chapter. We’re seeing more patients like her live longer, fuller lives.” 

Lavoie is now spending much of her life giving back, spreading the word about the importance of screening for colorectal cancer starting at age 45 and sharing the fruits of her creative energy. Her artistic repertoire ranges from the succulent plants and surgical masks she’s given her clinical team to throw pillows and tote bags she’s made for her daughters and nieces emblazoned with their college logos. She’s also working with Kozyreva to design a special shirt for improving the process of accessing a patient’s port-a-cath to administer intravenous fluids, drugs, and blood products. 

“We’re thinking the shirt would have a special Velcro opening,” explains Lavoie. “Instead of having to lift up or pull it down to reach your port, which is uncomfortable, it could just go through the opening.” 

And while Lavoie says she is “still tinkering” with the concept, Kozyreva has no doubt she’ll find a solution.  

“In a world of scans and labs and clinical notes, Clelia’s crafts speak a different language – one of resilience, grief, and grace,” says Kozyreva. “They invite us to see the patient not just as a body to treat, but as a soul to witness.”