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Not a family curse, but an inherited cancer syndrome

As a child, Eleana used to think her family was cursed. Her father, grandparents, and several aunts, uncles and cousins all had cancer and passed away at a young age. One cousin died of lung cancer when he was just 12 years old.

“I was afraid to let anyone get attached to me and I was afraid to get attached to anyone,” she says. “I thought if I love somebody they're going to die, if somebody loves me, they're going to die.”

When her daughter, Kiera, complained of a sharp pain in her side that wouldn’t go away, Eleana took her to Huntsman Cancer Institute (HCI). Kiera was diagnosed with pleomorphic sarcoma, an aggressive form of cancer, at the age of 19. After several months of treatment and surgery on her abdomen, Kiera was pronounced cancer-free.

Kiera’s experience with cancer gave her a new life mission. She became a cancer researcher at HCI.

“I had cancer, and now I'm helping other people that also have cancer,” Kiera says. “It makes me feel like I have this special connection and makes me more passionate and gives me a bigger drive to really find answers.”

While working on a project about Li-Fraumeni syndrome (LFS)—an inherited genetic mutation that means a nearly 100% risk of cancer—Kiera mentioned her family’s history with many types of cancer to a colleague. She suggested Kiera be tested for LFS. Two weeks later, Kiera was diagnosed with Li-Fraumeni syndrome.

She knew what her next step was. “I went home and I brought my paperwork and I showed my mom and told her she needed to be tested and that my dad needed to be tested as well,” Kiera says.

Eleana was also diagnosed with LFS, and she began getting annual screenings. Eleana says, “The first thing I thought was ‘Yay! We finally have an answer!’ I felt empowered that someone would now take us seriously and help us get screened.”

When she was 46, doctors diagnosed Eleana with renal cell carcinoma, and early detection saved her life. “They told me that with the kind of cancer that I have, you don't have symptoms until it's pretty much too late to do anything,” she says. She describes her treatment as “really easy,” with no radiation and no chemotherapy because the cancer was found so early. “Before, I was just constantly wondering if I would be next,” she says. “Now I go get screened. I feel safer.”

Eleana and Kiera are now encouraging other family members to be tested for LFS, and if they have it, to start annual screenings to spot cancer before it spreads. Kiera was recently accepted to a PhD program at the University of Utah. She says her goal is to finish school and continue to do “the nitty-gritty research” that helps move knowledge about cancer forward, so she can give hope to her family and other people diagnosed with LFS.

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.

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