Patient Pursues Best Quality of Life After Preventive Surgery 

As she got out of the car and waved goodbye to her husband and her mother, Margaret-Ann Simonetta’s shoulders stiffened with anxiety. It was April 2021, still in the height of the COVID-19 pandemic, and she was headed into Brigham and Women’s Hospital for a colectomy – a total surgical removal of her colon. With strict visitor restrictions in place, Simonetta rolled her suitcase through the revolving doors and headed up to the waiting room – alone.

“It was the bravest thing I’d ever done up to that point,” Simonetta recalls. “I was there with nothing but my suitcase, my honor, and my will to get the surgery done.”

Since she was a child, Simonetta, now 33, knew that several people in her family – herself included – had Lynch syndrome, an inherited condition that increases the risk of certain cancers, especially colon and endometrial cancer. She also had a family history of colon cancer.

Lynch syndrome affects about one in every 300 people and can be caused by mutations in one of five genes. Current screening recommendations for people with the condition include colonoscopies, upper endoscopies, skin checks, and gynecologic exams every 1-2 years, along with other screenings based on family and personal history. Simonetta had been faithful in scheduling and attending each one since she was a teenager.

Shortly after entering a doctoral program and securing a teaching position at Harvard University, Simonetta began experiencing chronic constipation, accompanied by bloating, vomiting, and fatigue. These symptoms not only affected her daily life but also made her annual screening preparations more challenging.

“I wasn’t able to eat because my body wasn’t metabolizing food,” explains Simonetta. “I was also experiencing weight loss and nutrient deficiencies. Amid all of this, I was a young scholar and teaching. No one knew about my symptoms other than my husband and my mother. I became a master at masking them.”

When she raised her symptoms with her care team back home in New York City, she felt they weren’t fully heard. Simonetta’s mother recommended transferring her care to the Lynch Syndrome Center at Dana-Farber, which would be closer to school and offered world-class care just across the Charles River.  

“Less than a week later, I was sitting in a waiting room at Dana-Farber, where they tested me and took my symptoms seriously,” recalls Simonetta. “Dana-Farber was the first place where I was treated like a patient and a person. I felt seen and understood, which was eye-opening for me.” 

A Life-Changing Surgery 

At the first appointment in January 2021, Ramona Lim, MD, realized that Simonetta needed specialty care to help manage her symptoms. Multiple tests showed that her colon was not functioning properly, and Simonetta’s care team recommended surgery to remove it even though she was cancer-free.  

Surgery is typically reserved for patients with cancer, but Simonetta’s team believed the procedure would improve her quality of life. 

“Margaret-Ann’s case was unusual in that even though she didn’t have precancerous polyps or signs of cancer, her colon was not working,” explains Lim, director of Endoscopy at the Lynch Syndrome Center at Dana-Farber and the Onco-Gastroenterology Program at Brigham and Women’s Hospital. “Chronic constipation was affecting Margaret-Ann’s ability to complete a high-quality colonoscopy prep as well as her daily life. It can be challenging to complete the prep with chronic constipation. In people with an increased risk of colon cancer, we want the prep to yield the clearest possible results, so we don’t overlook anything.” 

An Expanded View 

Before the colectomy, Simonetta planned her days around managing her symptoms. Whenever she traveled, she researched restaurant menus for foods she could eat and local doctors who may be knowledgeable about her condition. 

“It became a habit to call hotels to see if the concierge desk could help if I needed medical attention,” says Simonetta. “Now, I do that to be informed, but I don’t live through that lens anymore.” 

As she recovered from her colectomy, Simonetta noticed the world opening around her. “It took between four and six months to get back to being more active, but what a beautiful thing for my body to recover at its own pace,” she says. “Before the surgery, I was living a life in which I couldn’t eat or drink without severe consequences. Now, I have a beautiful nutritional life as well. I travel, I stay active, I try new foods, and through all that, I realized that the possibilities for my life were endless.” 

Simonetta also embraced the opportunity to reacquaint herself with her body. “I’d been an athlete my whole life, so recovering from the colectomy was a challenge in the sense that I had to slowly return to moving more,” she says. “I had never lived in a body that functioned properly before, and this was my chance to experience that.” 

Life Reclaimed 

In the years since her colectomy, Simonetta has become an avid IRONMAN triathlete, completing the IRONMAN World Championship course in Kona, Hawaii, in May 2025. She has also earned her doctorate while continuing to teach at Harvard and stepped into the role of president of the GI Cancers Alliance – a nonprofit dedicated to the prevention, treatment, and cure of gastrointestinal cancers through advocacy and industry and institutional collaborations.

“Dana-Farber is unlike any other medical space in the world,” says Simonetta. “Sharing my story is an honor, and I am grateful that Dana-Farber has given me the grace to share it.”

She has also kept up with her annual preventive screenings and remained cancer-free. “Ever since I was a child, my favorite quote has been, ‘Happiness can be found in even the darkest of times, if only one remembers to turn on the light,’” adds Simonetta. “Every day during my recovery, I’d challenge myself to find something to make me smile – no matter how big or small. The silo of your mind is inescapable, so finding positivity can be pivotal.”