After five bouts with cancer, plus a strong family history of cancer, Mary Lou Morgan suspected something inherited could be at play.
“This is not a coincidence,” the Auburn resident thought. “This has got to be hereditary.”
She was diagnosed with ovarian cancer in 1975 and her first of three colon cancer diagnoses happened in 1999. In 2002, she found out she had kidney cancer and had a kidney removed. But none of the doctors she talked with had answers for why she or her family was so prone to cancer – four close relatives had had colon cancer, too.
When she was diagnosed with colon cancer for the third time in 2015, she decided to come to Wilmot Cancer Institute for her care. She saw a gastrointestinal oncology specialist for the first time and was also introduced to Wilmot's Hereditary Cancer Screening and Risk Reduction Program, which had just started at Wilmot. In November 2021, the program celebrated its five-year anniversary.
“Our program is unique because we not only perform genetic counseling and testing, but we also follow our patients over the long-term, making sure they truly understand their condition and are doing everything they can to decrease their risk of cancer,” says Danielle Marino, M.D., Associate Professor of Medicine in the Department of Gastroenterology who works with the Hereditary Cancer program. “We act as a 'medical home' for patients who have pretty rare conditions, and we specialize in guidance around many of these rare conditions.”
Since it began, the program has seen approximately 5,000 patients. About 3,000 of them received genetic testing and of those, about 20% were found to have a genetic mutation.
“At first, the news about a cancer gene mutation can be worrisome and scary, but then we make a plan for cancer screening, early detection and prevention,” says Carol Lustig, MS, RN, ANP-BC, ACGN, Senior Nurse Practitioner and Assistant Clinical Director of the program. “Knowing about the presence of a cancer gene mutation enables families to be proactive, empowered, and in control about their health."
For Morgan, who is 74 years old, getting tested was important not only for herself, but for her family, as she has two adult sons and seven grandchildren.
“If you have a family history, you’ve got to know what it is, so I would say the genetic testing was major for me,” Morgan says.
Her test revealed that she had a mutation in the MSH2 gene, which meant she has Lynch syndrome, an inherited disorder that increases a person’s chance of developing colon cancer and certain other types of cancer.
With that information, she’s taken steps to reduce her chances of additional cancers, or at least increase chances of finding additional cancers early, when they are more treatable.
For example, she has colonoscopies with Marino every year – opposed to the normal five-year increment for those without a mutation – and also meets with the program team, who helps keep a close eye on her health. She greatly appreciates them, especially Lustig, the first person she saw at the program when it was just starting.
“Carol was what grounded me because she was so kind and so knowledgeable,” Morgan says. “She’s passionate about her work.”
Since starting more frequent colonoscopies, Morgan has had more polyps removed. It means more doctors visit, which she doesn’t love. But it also means more time enjoying life: shopping with girlfriends, visiting her family and even going dancing outdoors on Friday nights in the summer.
She acknowledges her luck – but also the team at Wilmot that helped her find answers and be proactive for herself and for her family.
“Prevention is everything,” she says. “If you have the tools and somebody knows you’ve got a genetic disease, it’s not a fun thing to know, but it saves your life and if it can save your life or your family, why wouldn’t you do it?”
The program is open to anyone, including those who are patients at Wilmot Cancer Institute, their families, or people who have never had a cancer diagnosis or treatment at Wilmot.
Those who have a strong personal or family history of cancer may benefit most, including those who have:
- Had a cancer diagnosis, especially if it was given at a young age
- Been diagnosed with multiple cancers
- Had multiple diagnoses of cancer among members of your family
To learn more or set up an appointment, visit the Hereditary Cancer Screening and Risk Reduction Program website or call (585) 486-0609.