For Ella, the sugar is a rare treat. For her health-conscious mom, it’s a nutritional sacrifice for science.
The Solomons are among 1,000 mother-and-daughter duos from the United States and Canada taking part in a long-term study of environmental, dietary and family links to breast cancer.
Funded by the U.S. National Institutes for Health, the “Legacy” study represents a shift in the focus of cancer research from diagnosis and treatment to prevention. And it’s one of the few involving girls so young, between ages 6 and 13.
Ella has no significant family history of cancer. Her mom heard about the study through a neighbor.
“We talked about how it would help scientists better understand cancer,” said Cindy, who told Ella that even though she’s not at risk, “You know people who have had the disease, and if you can help scientists and it’s fun, why not do it?”
Traditionally, researchers have focused on older women, asking them to recall details about their lives that may have predisposed them to breast cancer, said Saundra Buys, a principal investigator and co-director of the High Risk Breast Clinic at Huntsman.
“But more and more younger women are being diagnosed,” said Buys.
And increasingly risk factors are being traced back to our early years, she said. “As we follow these girls along, we’ll hopefully come up with some interesting hypotheses for things we can do in childhood or even in prenatal life to decrease the risk.”
Legacy — an acronym for Lessons in Epidemiology and Genetics of Adult Cancer from Youth — is being done at Breast Cancer Registry sites in San Francisco, New York, Philadelphia, Toronto and Salt Lake.
The Solomons are among 150 enrolled through Huntsman.
Every six months for at least five years they will answer detailed questionnaires about their exercise habits, the food they eat and the cosmetics, hair gels and perfumes they use.
Ella will be measured and weighed and will volunteer saliva and urine for testing hormonal and genetic changes.
She also agreed to give blood — it’s optional — which didn’t seem to bother the wiggly, giggly girl at her last clinic appointment in August.
Clinic visits are kept upbeat. Many of the participants have lost close relatives, such as an aunt, grandmother or older sibling, but none of the girls will be tested for the breast cancer genes, BRCA1 or BRCA2.
“A lot of them had a mom who died of breast cancer and they’re coming in with their dad. That’s why there was a lot of talk up front about how to frame this,” said Buys.
Read the rest of this story by Kirsten Stewart of the Salt Lake Tribune here.