The best sports stories have a hero you want to root for, and in this one, it’s Taylor Ray. The star basketball player from a Denver suburb has gone head-to-head with an opponent no one wants to face: an extremely rare liver cancer. And despite being a thousand miles away, Taylor and her family chose several doctors at RUSH to be part of her home team.
The quest to find answers
During her sophomore year as a forward on the Highlands Ranch girls basketball team, Taylor averaged 13 points per game and was already being courted by several college basketball programs. But in the summer before her junior year, Taylor knew something wasn’t right.
“I was feeling tired and not very energetic,” Taylor says. “The biggest symptom was that I could feel something ‘popping out’ of my stomach when I would breathe.” Initially, local doctors thought the then 16-year-old might have a hernia from playing hoops, but an ultrasound uncovered a large mass on her liver. They told the family that Taylor had a type of liver cancer called hepatocellular carcinoma. But in fact, she had a much rarer type of liver cancer called fibrolamellar hepatocellular carcinoma, also known as just fibrolamellar carcinoma or “fibro.”
“It’s a completely different disease that needs to be treated completely differently,” says Paul Kent, MD, a pediatric oncologist and medical director of RUSH’s fibrolamellar carcinoma program, which has treated more than 100 patients from 13 countries in the past five years, making it the world’s largest fibro program.
Fewer than 100 Americans — most who are otherwise healthy children and young adults — are diagnosed with fibro each year, Kent says. In fact, it is so rare that it is often misdiagnosed as hepatocellular carcinoma, the more common form of liver cancer that usually affects older people who have liver disease from alcoholism or hepatitis. With fibro, the cause is unknown, although genes may play a role.
Before the Ray family came to RUSH, finding answers about fibro was difficult. “We felt like we were at one of the best children’s hospitals in the world in Colorado, but they were not very familiar with this cancer, and the prognosis was only about a year,” says Tim, Taylor’s dad. “Dr. Kent was the most knowledgeable clinician we could find in the country, and the most caring and passionate about finding treatments and a path to cure for his patients.”
The RUSH approach to fibrolamellar carcinoma
Like Taylor, most patients with fibro have large liver tumors that can be removed or partially removed with surgery, although some centers will not perform this procedure on fibro patients. Many fibro patients also benefit from chemotherapy before surgery to reduce the size of their tumor. “What makes it challenging is that there is no proven chemotherapy treatment for the disease,” Kent says. At RUSH, doctors are testing innovative regimens for treating fibro, and recently presented some of their findings at the 2022 meeting of the American Society of Clinical Oncology.
But even with surgery, about 80% of fibro patients will see their cancer return because microscopic cancer cells remain circulating in their bodies. That is why doctors at RUSH use a type of aggressive systemic therapy called immunotherapy to bring the cancer into remission and help prevent relapse.
“Immunotherapy uses the principles of vaccination to teach your body to kill any cells that look like fibrolamellar carcinoma and remember what they look like so if it ever comes back again, your body will be ready to kill it off,” Kent says.
Prior to coming to RUSH, Taylor had surgery at another hospital to remove part of her liver. In September 2020, the Rays came to RUSH to meet with Kent, who designed a plan to keep Taylor’s cancer in remission and prevent relapse. “He made me feel comfortable with all the different treatments,” Taylor says. “It seemed like he actually cared about me as a person and was interested in how to make the treatments work best for my life.”
In January 2021, Taylor began immunotherapy with three different drugs: nivolumab, PEG-Interferon, and capecitabine. Because immunotherapy unleashes the power of the immune system, some patients can have harsh side effects and develop autoimmune disease. Although Taylor had no side effects after the first cycle, the second cycle was rough. She had chronic vomiting and lost 25 pounds from her athletic frame. She also developed hypothyroidism and diabetes, which can sometimes happen with immunotherapy. “The diabetes was, and still is, very hard to adjust to,” she says. “Trying to keep my blood sugar levels in a good place has been difficult to deal with.”
Taylor also had microwave ablations performed on two small tumors at RUSH in April 2021 and on another small tumor in December 2021. Jordan Tasse, MD, an interventional radiologist and director of interventional oncology at RUSH, performed the ablations, which use heat to eliminate tumors in the liver and other parts of the body.
“Through a pinhole incision, we can place a probe into the area of the body and use heat to basically kill the tumor from within,” Tasse says. Ablations work well paired with immunotherapy for fibro patients. “With this type of treatment, we’re trying to get direct, local control of the tumor while the systemic therapy takes care of any circulating, microscopic disease in the body. So doing them together is ideal,” he adds.
Taylor says recovering from the minimally invasive outpatient treatments was relatively easy. Afterward, she went home with just a small Band-Aid on her abdomen and some soreness near the treatment site. Within a week of both treatments, she was back at basketball practice.
Making her comeback
Despite the many challenges Taylor faced during her junior year, she maintained a winning attitude. Even when she was feeling her worst, Taylor was a loyal teammate to her fellow Falcons. “She went to practice and did what she could and sat on the bench in every game,” Tim says.
That commitment combined with her aggressive treatment plan helped bring Taylor’s fibro into remission during her senior year and get her back on the court — a sight that brought tears of joy to her parents in the stands.
It was also clear that her competitive spirit remained. “My best game this past year was a game against one of our rivals. We are always the top two teams in our conference, so it is always a very close game. This year, we beat them, and that led us to win our league.”
Although Taylor’s team lost in the final four of her state’s tournament, she still had reason to celebrate after winning an honorable mention from her league.
“I can’t express how happy I am to be back playing basketball. It just makes me smile,” Taylor says.
A promising future
This fall, Taylor will head to Colorado State University to play basketball. “I am feeling great now that I am in remission,” she says. “I’m able to do everything that I love.” While the team doctor will need to evaluate her and make sure she remains healthy enough to compete, the CSU team is dedicated to supporting her in this journey, her dad says.
To other young people facing a difficult diagnosis like cancer, Taylor offers this advice: “Just keep a positive mindset and know your limits,” she says. “If it makes you happy, try playing a sport or do whatever you love if your doctors allow you to. I found that it kept my mind off things and kept me enjoying life outside of treatments and surgery.”
Her doctor also stresses the power of optimism. “I strongly believe that hope is medicine,” Kent says. “It makes a big difference.”
Read more about RUSH’s approach to pediatric oncology care.