When Tonia Nickolaus received radiation and chemotherapy at the University of Minnesota when she was 9, the treatments were dramatically harsher and more damaging than protocols used today.
But 28 years ago, when Nickolaus was diagnosed with acute lymphoblastic leukemia , a type of blood cancer that causes the body to overproduce white blood cells, survivorship rates of childhood cancer were much lower — around 20 percent — so doctors had no idea what kind of later-life effects her treatment would cause, she said.
They couldn’t know the radiation to her brain would cause skin cancer. They couldn’t know the chemo and radiation to her chest would cause congestive heart failure, resulting in three major open heart surgeries.
Now a mother of two, Nickolaus says survivorship has taken on a whole new meaning.
“It’s not just the fight for myself, but it’s the fight that I have to be here for them,” she said. “When I found out I had heart disease, it was like, OK, it maybe wouldn’t have been so bad if I didn’t have my girls, but now I have them, and I have to take care of them.”
Nickolaus was just one of nearly 200 cancer survivors, their families and physicians, who gathered Saturday to attend a series of lectures on some of the long-term physical and psychological issues associated with cancer survivorship.
The Masonic Cancer Center , housed within the University of Minnesota’s Academic Health Center, brought speakers ranging from primary care physicians to lawyers, to educate the survivors on resources and potential issues down the line.
Drs. Daniel Mulrooney and Joseph Neglia , both pediatric oncologists, specialize in treating and researching survivorship of childhood cancers, such as leukemia, brain tumors and lymphomas.
“The purpose of the conference is really to bring most of what we’ve learned here at the University of Minnesota in cancer and cancer survivorship back to survivors,” said Mulrooney.
Both work in the Masonic Cancer Clinic’s Long-Term Follow-Up Clinic , which specializes in treating cancer survivors.
Survivorship rates have shot up since Nickolaus received her treatment back in 1981, and the most recent numbers indicate about 80 percent of children diagnosed with cancer before age 19 will survive , Neglia said.
“These patients, for the most part, grow up and function very well,” he said. “They get jobs, they are back in school. By most standards this is a real success story.”
But “curing” cancer isn’t the end of the story for many patients.
The later effects range from the more serious, such as Nickolaus’ cardiac condition, to smaller chronic conditions, such as weakness and fatigue.
“A lot of what we talk about really is not focusing on all the problems but focusing on, ‘What are strategies to be healthy?’” Neglia said.
Part of Neglia and Mulrooney’s research is a major study of childhood cancer survivors, which compared their outcomes to the siblings of the cancer survivors.
“We found them to report a higher risk of having a heart attack, having valvular disease, pericardial disease and having congestive heart failure,” Mulrooney said of the 14,000 survivors studied. “The overall incidence was low, but the risk when you compare to other 20-30-year-olds, the risk is quite high.”
The Long-Term Follow-Up Clinic admits patients who are five years past their diagnosis, and continues to treat them the rest of their life, Mulrooney said.
In addition to tracking which drugs and radiation therapies patients underwent, they also have a psychologist and social worker on-site, he said, “to be comprehensive about their health care and the effects on their whole life.”
It was the effect the cancer had on her entire life that really surprised genetics and cell biology sophomore Sanyu Janardan when she was diagnosed with Hodgkins lymphoma, a cancer that causes the lymph nodes to multiply and become invasive toward other parts of the body , during her junior year of high school.
When she first received her diagnosis, Janardan said she remembers thinking, “Me?”
“It’s something you hear about, like your neighbor, or some famous celebrity or your friend’s aunt, but you never think it would happen to you,” she said.
Although her initial treatments worked, and she was declared in remission just five months after her diagnosis, Janardan said there have been lasting effects on her health.
“It took me a while to realize, cancer is a big part of my life,” she said. “But it doesn’t define me.”
Janardan remembers being known around her high school as “the girl with cancer,” but said it’s faded into the background a little more.
“Now it’s more like, ‘Oh yeah, I have cancer, but I do karate, I do Indian dance.’ It’s like one more fact about me,” she said, adding a positive effect the cancer has had is she now wants to be a pediatric oncologist.
Both Nickolaus and Janardan said their experiences with cancer made them stronger — strong enough to face whatever late-effects their bodies may undergo.
“I have this attitude like, ‘I had cancer, I survived that,’ ” said Janardan. “I can take on whatever other challenges.”
—Emma L. Carew is a senior staff reporter