Kathy and her niece, Rhonda, regularly make the trip from their small town in Illinois, to Salt Lake City. They don’t come to see family and friends or to cheer for the University of Utah. They come to Huntsman Cancer Institute (HCI) to be tested for polyps in their small intestines.
Kathy and Rhonda both have familial adenomatous polyposis (FAP), an inherited genetic disease. FAP causes hundreds of polyps to form throughout the small and large intestines. Any polyp in the intestine has the potential to become cancer. With so many polyps, people with FAP have a nearly 100-percent chance of developing colon cancer. Patients with FAP often undergo surgery to remove the colon so cancer can’t develop there.
“I can remember my grandmother having surgery,” Rhonda says. “After that, I can remember my mom having surgery right away, and then my aunt having surgery right away, and then me having to undergo some testing.”
Kathy had a similar experience. She says as kids, she and her siblings knew their grandfather and mother had a condition, but didn’t realize the effect it would have on them.
Family members started searching for a doctor experienced in genetic cancers. They found HCI, where the genetic cause of FAP was discovered. There they met Jewel Samadder, MD, clinical director of HCI’s high-risk cancer clinics.
“Removing the colon still leaves FAP patients at risk for other cancers, and the small intestine is still at risk for polyps,” says Dr. Samadder. He leads a clinical trial to test a new medication that reduces the number of polyps forming in the small intestine.
This trial hopes to give patients the option of avoiding multiple surgeries through precision cancer prevention. “We can target the use of a medication to people with the highest risk of cancer,” Dr. Samadder says. “Whether it's cancer in the colon or the small intestine, we can reduce or eliminate the chance that they develop those cancers.”
The first round of testing showed promising results. In less than six months, half the patients who received medication saw a nearly 70 percent regression of polyps. For some of that number, polyps disappeared completely.
Kathy and Rhonda both took part in the trial—not only for their own health, but for the health of their children. Rhonda says, “HCI has given me hope for my children and my grandchildren. Now that they know the genetic marker, my children can have children without the disease. It gives my family hope.”
Kathy agrees, adding that she knows the researchers and doctors at HCI won’t stop looking for a way to stop the threat of cancer altogether. “There isn’t complacency,” she explains, “When they get through with this trial, they’ll move on to something else. They’ll keep working, and that offers hope to my family.”
Dr. Samadder says he’s thankful to have people like Kathy and Rhonda fly across the country to be part of this important trial. Currently, HCI is working with the National Cancer Institute to open a trial for this treatment that includes several other cancer centers nationwide.
“We hope this treatment will spur future trials looking at chemoprevention or precision cancer prevention in high-risk disorders such as FAP, Lynch syndrome (another cause of colon cancer), and hereditary breast and ovarian cancer,” he says.
Huntsman Cancer Institute (HCI) is a National Cancer Institute (NCI)-Designated Comprehensive Cancer Center, which means it meets the highest standards for cancer research and receives support for its scientific endeavors. HCI is located on the campus of the University of Utah in Salt Lake City and is a part of the University of Utah Health Care system. HCI treats patients with all forms of cancer and operates several high-risk clinics that focus on melanoma and breast, colon, and pancreas cancers, among others. HCI also provides academic and clinical training for future physicians and researchers. For more information about HCI, please visit www.huntsmancancer.org.