Mass. — For families affected by Lynch syndrome, cancer can feel like an ever-present threat.
The inherited genetic disorder significantly increases the risk of colorectal cancer and also raises the risk of several other cancers. Experts estimate about one in every 279 people in the United States has Lynch syndrome, but many don’t know they have it.
Now, researchers are testing a vaccine they hope could one day help prevent cancer from developing in people with the condition.
Dr. Stacy Norton knows the risks firsthand.
Her mother died of colon cancer in her early 30s. Her sister died of brain cancer at just 25. And her maternal grandmother had both colon and uterine cancer.
“There’s a huge family history, huge,” said Norton, an OB/GYN at Houston Methodist.
Genetic testing eventually revealed that Norton also has Lynch syndrome, which is caused by an inherited mutation affecting one of several genes responsible for repairing damaged DNA.
For Norton, the diagnosis underscored just how important cancer screening and prevention would be.
At 47, she underwent what she believed would be a risk-reducing hysterectomy.
Instead, doctors discovered she already had stage 1 uterine cancer.
Norton has now twice participated in early clinical trials testing a vaccine designed for people with Lynch syndrome.
Researchers hope the vaccine can train the immune system to recognize and attack abnormal cells before they develop into cancer.
Norton says she received her first vaccine in 2023 and a second dose in 2024.
And she says she’s already seen an encouraging milestone.
“July 30th of 2024 I had a colonoscopy and that’s the first time ever I’ve had a colonoscopy with no polyps, which was huge for me,” Norton said.
The vaccine is still being studied, and researchers need more evidence to determine whether it can actually prevent cancer.
Her children also have Lynch syndrome, and she hopes advances in prevention could help spare them from the cancers that have affected generations of her family.
“If we don’t do these things, then we won’t ever move medicine forward and make it better for everybody,” Norton said.
For families living with Lynch syndrome, that progress could eventually mean more than earlier detection. It could mean preventing cancer before it starts.
This is a developing story. Check back for updates as more information becomes available.
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