For childhood cancer survivors, the gift of life can carry new challenges

12/01/2013 12:00 AM

11/30/2013 11:16 PM

The ailments of old age have taken a toll on Evan Whisenant. In the past few years, she’s dealt with osteoporosis and cataracts. She’s gone through a couple of bouts with melanoma. Her lung function is low, and she has problems with her memory.

Much of this is to be expected as people grow older – but Evan is only 10, a fourth-grader living with her family in Antelope. And all of these maladies are side effects of the intense radiation and chemotherapy treatments she endured half her lifetime ago, when she beat a rare and especially tenacious form of leukemia.

“It’s almost like this beautiful little soul is living in this body that looks 10 but is really a lot older,” said Evan’s mother, Shannon Whisenant, 34. “She’s so spirited and strong.

“There’s not a day I’m not grateful for her. But there are also points where I wonder who she would have been. The things we did have long-lasting complications.”

This is the reality lurking on the other side of survival. When children are diagnosed with cancer, families fight so hard for them to make it; their lives are a gift. But the miraculous treatments that save childhood cancer patients can also, years after the fact, make them susceptible to secondary cancers and other health problems, a range of illnesses known as late effects. Now researchers are learning that those late effects can include not only the early development of the illnesses of old age but also the premature onset of frailty – the kind of physical weakness, exhaustion and low muscle mass seen more commonly in people of advanced age.

The numbers are startling. St. Jude Children’s Research Hospital research shows that 80 percent of adults who beat cancer as kids have a chronic, perhaps life-threatening health condition by the time they reach age 45. More than half have heart abnormalities by that age. Another 65 percent have impaired lung function, and 48 percent have memory impairment.

“We were surprised by the degree of problems, and I think the survivors we studied were, too,” said Kirsten Ness, a St. Jude scientist. “We didn’t expect it to be as profound, either in the number of chronic conditions early in life or in the degree of aging.

“Survivors have a progressively increased loss of muscle mass. That’s a sign of aging. As young adults, they walk slower than the normal population. Their hand grip strength is weaker. They report fatigue. In those ways, they’re similar to people in their 60s.”

Statistically speaking, cancer itself is a disease of age. Out of an estimated 1.6 million new cancer cases diagnosed this year, says the National Cancer Institute, 75 percent will be in people 65 and older – and only 13,400 will occur in children. Fortunately, as treatments have grown more streamlined and sophisticated, the pediatric oncology survival rate has risen to 80 percent, up from only 20 percent in the 1960s: The survival of these desperately ill children is a major medical success.

The American Cancer Society estimates that 395,000 people across the country have survived childhood cancers. But for many of them, the gift of survival – the miracle of overcoming cancer – can bear serious, lifelong consequences.

“We want them to survive their cancer, and then we deal with the problems,” said Kay Wells, a pediatric nurse practitioner at the UC Davis Comprehensive Cancer Center, which like most cancer hospitals today provides a follow-up survivor care clinic to monitor its young patients.

At the clinic Wells runs, called Getting Regular Evaluations After Treatment, she sees children and people in their teens and 20s for an annual series of scans and tests designed to evaluate their specific risks. The goal is to provide them with a thorough summary of their treatment, including drugs and dosages used, as well as guidelines on what their late effects might be. Through an Internet tool called Passport to Care, they’ll be armed with that information wherever they go, and so will their future primary care physicians.

Researchers know that the risk of late effects depends on the patient’s age and gender, the kind of cancer they had as well as the treatments: surgery, chemotherapy, radiation or stem cell transplant, or perhaps all of the above.

Children exposed to radiation can be at risk of skin cancers. Those who received steroid treatments can develop osteoporosis. A common chemotherapy drug, anthracycline, increases the possibility of heart problems. Chest radiation can cause lung problems. Cranial radiation can leave patients with cognitive impairment. Infertility can result from treatment, depending on the patient’s age and the kind of cancer.

Kimberly Nall, a 32-year-old childhood cancer survivor who grew up in Sacramento and lives in the Bay Area, knew that the extensive chemotherapy that saved her life had left her with an 85 percent chance of infertility.

She underwent treatment for Ewing’s sarcoma, a rare bone cancer, when she was a Casa Robles High School student, then again during her college years at UC Davis. As a result of chemotherapy, she developed a secondary cancer, a rare renal cell carcinoma, at age 22. But she graduated from college and pursued a career as a fundraiser for nonprofit agencies. And seven months ago, she gave birth to a daughter, Charlotte.

“For the most part, with all the poison they’ve thrown at me, I’ve lucked out completely,” said Nall. “I feel I’ve dodged a bullet.

“They’ll always monitor me for issues with my heart. Breast cancer is a very possible side effect with some of the treatment I’ve had. For any person diagnosed with cancer, it’s always at the back of your mind.”

That’s because the longer that childhood cancer patients survive, the greater their risk becomes of developing health problems related to their treatment, according to results of the St. Jude Lifetime Cohort Study, an ongoing, comprehensive study of longtime survivors treated at St. Jude as children. In a real way, people who beat cancer as kids in the 1960s and ’70s are pioneers helping today’s doctors research the science of their survival.

James Eversull doesn’t remember his treatment – he was diagnosed with acute lymphoblastic leukemia, the most common childhood cancer, when he was only 18 months old in 1964 – but he remembers going back to St. Jude for tests until he was 15. The retail store manager, who lives in Dallas, returned to St. Jude in his early 40s as part of its survivor research.

“I thought I was in good shape,” said Eversull, now 50. “But they told me I was obese for my height, with high blood pressure and high cholesterol. The doctor said I was close to being diabetic.”

Researchers recognize that the early onset of blood pressure and cholesterol problems is a late effect of some childhood cancer treatments. So is diabetes.

“I said, ‘That ain’t happening to me,’” said Eversull.

He started working out, lost almost 50 pounds and has run three marathons – and he’s beaten back his diabetes and heart disease risks.

“You can’t take back that you got radiation or chemotherapy, but exercise and diet can reduce your overall risk of late effects,” said Ruth Rechis, a Livestrong Foundation official and pediatric cancer survivor. “Getting moving again is such an important issue. And knowing what you should be screened for is so important.”

It took a lot to save Evan Whisenant after she was diagnosed in 2008: round after round of increasing doses of chemotherapy, 13 rounds of cranial radiation and, finally, a bone marrow transplant.

“It was boom, boom, boom, save her,” said her mother, Shannon. “I would have done anything. The doctors said it was risky. It was a shot in the dark, and we knew there would be side effects.”

Even with aggressive treatment, Evan was given only a 50 percent chance of surviving five years. Yet she continues to thrive, despite the host of late effects that have required diagnosis and treatment. Today she’s a little girl who likes to wear pink and purple polish on her nails and bake cookies with her mother. Her favorite variety?

“Snickerdoodles,” she said. “They’re Santa’s favorite, too.”

On a cloudy morning, Evan ran upstairs in her family’s tidy home, then downstairs, then outside to check on the dog, Mason, who was barking.

Her mother is grateful beyond words for her daughter’s life. All the side effects of her cancer treatment – the cataracts, the secondary cancer, the possibility of other problems in the future – don’t seem fair to Shannon Whisenant, considering what Evan has already endured. But she has her daughter, and her daughter has a future.

“All the late effects haven’t presented yet,” she said. “Hopefully, she’ll have a very long life, but we don’t know what happens in 20 or 30 years. But I have no doubt she’ll conquer what comes.”

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