Teen Girl With Rare Cancer Helps Doctors Study It After Beating It

Any teen girl diagnosed with a rare form of cancer would naturally be devastated to hear those words from a doctor. Elana Simon, 18, from new York is one of those girls, but her journey doesn’t have the usual storyline.

She had suffered stomach cramps as a child, was diagnosed with lactose intolerance, stress, appendicitis and a possible bacterial infection before doctors determined the source of her symptoms was liver cancer. Elana went to the Internet to learn what she could about this disease.

“The more I found the less encouraging things became,” she said. “People didn’t know or seemed to be doing much about it.” Turns out she had Fibrolamellar Hepatocellular Carcinoma which is an extremely rare form of liver cancer that mostly hits adolescents and young adults.


Instead of going through the usual route of treatment then going on her merry way in life after recovery, she decided to get in touch with her doctors and help them study her illness. This impressive move landed her a co-author credit for a published research paper in the Science online journal. Not to shabby!

“It’s crazy that I’ve been able to do this,” said Elana.

Her father, who runs a cellular biophysics lab at the Rockefeller University, her own surgeon, and gene specialists at the New York Genome Center were the people spear-heading this research, along with another survivor of the same caner who wanted to remain anonymous.

Elana’s proactive approach to wanting to study this cancer has helped scientists find a weird gene flaw that might play a role in how the tumor strikes, but there is still much more research to do says Elana’s father Dr. Sanford Simon.

Surgery is the only effective treatment, and Elana’s tumor was caught in time that it worked. But there are few options if the cancer spreads, and she knows other patients who weren’t so lucky.

A high school internship during her sophomore year let Elana use her computer science skills to help researchers sort data on genetic mutations in a laboratory studying another type of cancer. Elana wondered, why not try the same approach with the liver cancer she’d survived?

Elana’s genius involvement prompted the idea that other patients should also get involved in scientific research. Scientists at the National Institutes of Health are advising the Simons on how to set up a patient registry, and NIH’s Office of Rare Diseases Research has posted on its web site a YouTube video in which Elana Simon and a fellow survivor explain why to get involved.

The hurdle: Finding enough tumors to test. Only about 200 people a year worldwide are diagnosed, according to the Fibrolamellar Cancer Foundation, which helped fund the new study. There was no registry that kept tissue samples after surgery.


Her pediatric cancer surgeon agreed to help, and Elana spread the word to patient groups. Finally, samples trickled in, and Sanford Simon said his daughter was back on the computer helping to analyze what was different in the tumor cells.

Elana’s dad says this is an exciting time for kids to to go into science because there’s so much they can research on computers. Case in point, Elana plans to study computer science at Harvard next fall.

“Initially I didn’t think we’d find anything that could actually help people,” she said. “It’s awesome that things are coming together and the research is doing well.”

So the lesson here is that there is always an opportunity to create something wonderful out of a seemingly horrible situation. It’s refreshing to see a teen girl using her spare time to potentially save the lives of other human beings. There’s a good chance you would never see someone like Elana in a reality TV show or splashed across the tabloids, and that’s what is so awesome. She is excelling at real life, as an inspiration for other teens out there in the world.

On that note, how will you approach your life differently when you wake up tomorrow?




  1. Pingback: Obama Puts Focus On Girls At Annual White House Science Fair

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.