Almost all children who survive cancer have at least one chronic health condition when they’re adults, and those conditions are often serious and undiagnosed.
Those are among the findings of a study that St. Jude Children’s Research Hospital released this summer. Some of the survivors who took part in it live in the Charlotte area.
Charles Landis still has the X-rays from when he was six years old. At his house in Cornelius, he pulls one out of a folder.
“This is an old X-ray from 1977,” Landis said.
It’s faded a bit and the corners are discolored, but you can clearly see a white bone. It’s Landis’ upper arm.
“You can tell on the inside of the bone right here, that growth, it’s the Ewing’s sarcoma.” That’s the cancer tumor he had.
It’s been more than three decades since doctors at St. Jude Children’s Research Hospital in Memphis successfully treated Landis’ cancer. You can still see the effects.
Landis is a big guy. He’s 6 feet 8 inches tall, 230 pounds and muscular. But he just can’t build much muscle on his right upper arm, which is much smaller than that forearm is. (He says kids using to teasingly call him Popeye when he was younger.)
There are other effects, too, like nerve damage in his leg and scarring in his liver. He found out even more worrisome news recently.
“We found some hardening in one of my heart valves, and that's one of the side effects,” Landis said. “Most of the people that had my chemotherapies end up having congestive heart failure.”
Landis learned that by going back to St. Jude for a follow-up study on how childhood cancer survivors fare later in life. (It’s called the LIFE study.) He was among more than 1,700 survivors who went back for the study. Dr. Melissa Hudson is its co-author.
“If you estimate what proportion will have a chronic health condition by age 45, it's 96 percent,” Dr. Hudson said in a phone interview. “If you estimate what proportion will have a serious, disabling or life-threatening condition by age 45, it's 81 percent.”
She said there’s a combination of things that lead to so many of them having problems later in life, but a big part of it is the treatment that saves them in the first place. Think about it: doctors are giving large doses of radiation and chemotherapy to children who are still developing.
“We're trying to kill rapidly growing cancer cells that are not responding to the normal growth and death signals,” Dr. Hudson said, “so when we give them these treatments, we invariably are affecting some normal tissues, sort of as a bystander effect.”
She said one of the study’s goals is to better understand those long-term effects so doctors can find less harmful treatments.
Another side effect can be infertility. That was the case for Charles Landis and also for Sharla Bond, who lives in Charlotte.
“After getting checked out and they look at your eggs, they said, yeah, you have eggs, but they just look like an old lady's eggs,” Bond said with a typically good-natured laugh. “They just look really old.”
Bond found that out when she was in her mid-30s, so she and her husband decided to adopt.
Their son Greyson is 11 years old now, and he loves dancing along to a Nintendo Wii video game. Greyson and his mom often play it together. Bond jokes she's much better at the ‘80s dances.
Bond survived non-Hodgkin’s lymphoma as a teenager. She said the St. Jude study was a wakeup call.
“I never really thought about the side effects from the cancer, the treatment,” she said. “Not until I went to this life study did I realize I really need to have my eyes checked every year.”
That’s because some of the drugs she got can cause cataracts later in life. Bond also learned her doctors should do an extra thorough check of the areas she received radiation and should closely monitor her thyroid levels.
Back in Cornelius, Charles Landis said the number one thing he’ll get his doctors to monitor is his heart condition. He’s planning to go back to St. Jude in a few months for another checkup.
“Then we can kind of track it a little bit and see where we're going to go from there,” Landis said.
That's what the study's co-author said all childhood cancer survivors need to do – find out what they're at risk for now and get screened.