There are more than 300,000 people in the U.S. who have survived childhood cancer, but researchers have found that many of them are at risk of developing other medical problems and, potentially, other cancers years later. A number of programs are working to prevent — or at least minimize — those problems.
The largest such program in Southern California is the Childhood Cancer Survivorship Program at City of Hope Hospital in Los Angeles. Its 500 patients include adults who survived cancer as kids and children going through cancer treatment now.
The program serves as a case manager for its patients, while documenting its work as part of a long-term study on dealing with the effects of childhood cancer treatments, said program director Dr. Smita Bhatia.
Bhatia, who has been researching the long-term effects of childhood cancer treatments for nearly 20 years, said researchers have learned a lot during that time.
For example, girls who receive chest radiation are at increased risk of breast cancer, and some types of chemotherapy given in high doses can damage nerves or the heart, she said. In addition, children treated for brain tumors may develop cognitive issues, as will kids who receive certain chemotherapy treatments for leukemia.
Bhatia is using what she’s learned in the Survivorship Program, which opened in 2003, to educate her fellow pediatric oncologists.
For example, she said she will tell them, "Hey guys, don’t use radiation to the brain at such a high dose at such a young age, or don’t use such a high dose of radiation in young girls during adolescence because that can cause breast cancer down the road."
One patient who has benefited from the program is 43-year-old Lisa Riggs. She survived two bouts with a muscle tissue cancer before puberty. For years afterward, she suffered from a variety of problems, including "intolerance to heat, inability to sweat, chronic sinus infections, thyroid," she said. She also has severe neuropathic pain. "When the pain is bad, ... it feels like someone’s lit my legs on fire and someone is also pulling the muscle off the bone," she added.
Her doctors kept telling Riggs there was nothing wrong with her. Then in 2004 she met with Bhatia, who determined that various chemotherapy drugs, along with radiation, were responsible for her symptoms. She said the childhood treatments also put Riggs at risk for certain diseases, including cancer.
Riggs said it was a relief to discover the causes of her problems. "It was like, OK, that makes a lot of sense. I am not crazy," she said.
Today, the Cancer Survivorship Program staff coordinate Riggs' coverage with the various specialists treating her, connecting the dots between symptoms and past treatment, and making sure she is given various tests early and often.