Being labeled a “cancer survivor” might have a lot of positive implications, but most survivors run into later problems as a result of their treatment.
The University Cancer Center plans to bring together childhood cancer survivors Saturday to discuss problems and educate them about these concerns.
These problems, or aftereffects, can leave people with the same fear they felt when they were first diagnosed.
Matt Deyo, a University student who was diagnosed with bone cancer when he was 18, said knowledge helps alleviate that fear.
“Every time I have a tingle in my foot I don’t freak out and think ‘Oh my gosh, the cancer’s back,’ ” Deyo said. “The information is liberating.”
The Beyond the Cure conference will bring together medical professionals to discuss topics such as health risks, long-term medical issues and learning problems after cancer treatment, said Nancy Youngren, a pediatric nurse.
“Childhood cancer survivors are going to be living a whole lot longer than an adult cancer survivor,” she said. “They’re got a lot more years to live with these potential complications.”
The University is the center of the nationwide Childhood Cancer Survivor Study and also provides ongoing clinical care for cancer survivors through the Long-term Follow-up Clinic, said Daniel Mulrooney, director of the clinic.
“I want (survivors) to better understand how to overall take care of their health and improve their health hopefully for a very long life,” he said.
About 80 percent of children with cancer survive, and of those, Mulrooney said, 60 percent to 70 percent will have aftereffects.
These effects can include problems such as reoccurring cancer, infertility, psychological problems and heart and lung complications.
Deyo, who is now 26, said his biggest concern is heart problems that can appear as a result of his past chemotherapy treatment.
“I don’t live in fear of heart problems, but it is something that I need to be aware of and discuss with my doctor,” he said.
Besides providing information, the conference also will offer an opportunity for
discussion, Youngren said. At the end, author and humorist Scott Burton, a cancer survivor, will discuss his battle with cancer.
“He actually can make cancer funny,” Youngren said. “I don’t know how, but he does.”
Scott Baker, an associate professor of pediatrics who will speak at the event, said the number of childhood cancer survivors is increasing and these survivors are in need of aftereffect resources.
“There’s really not any good mechanism that survivors can get this kind of information,” he said.
The information provided in the conference is a result of the Cancer Center’s Childhood Cancer Survivorship Research Program.
“A lot of the research that we’re trying to do will hopefully help us to modify the treatment phase so that we’re not causing as many of the long-term kinds of complications,” Baker said.
Deyo said he plans to attend the childhood cancer survivor conference.
“This conference provides tools that empower survivors to take an active role in their health care,” he said.