Backed by U resources and a generation of research, childhood cancer survivors are thriving decades after treatment
Danielle DuRoche was diagnosed with Hodgkin lymphoma at age 17. Since then, she has survived cancer three more times—another bout with Hodgkin, then thyroid and breast cancer. The thyroid and breast cancer are likely the result of radiation treatment DuRoche received the first time she had lymphoma.
Today she’s cancer-free again. But the Prior Lake, Minnesota, mom and teacher says cancer treatment and survival exact a unique toll on a person’s mental and emotional health.
“That’s the hardest,” she says. “Every day, wondering if it’s going to come back. I think it eats away at me; it has really shaken me.”
That’s why she is grateful for her physician, Anne Blaes, M.D., at M Health Fairview and the integrated, comprehensive, and tailored approach to helping cancer survivors stay healthy throughout their lives.
Under Blaes’ direction, the survivorship program goes far beyond restoring physical health and preventing or mitigating “late effects” of cancer treatment, which can include heart problems, new cancers, bone frailty, hormone imbalances, infertility, and memory or learning issues.
It also helps survivors address common quality-of-life issues such as experiencing lasting depression and anxiety, coping with financial fallout, finishing school, beginning or resuming a career, confronting changes in family dynamics, and more.
“The way the people at the U work together—it’s amazing. Anne is amazing,” DuRoche says.
A longer, healthier life
Thanks to ongoing advances in cancer diagnosis and treatment, there are now an estimated 16.9 million cancer survivors in the United States, according to the National Cancer Institute. That number represents nearly 5 percent of the country’s population—and it is steadily increasing. Today more than 80 percent of people with pediatric cancers (those diagnosed at age 19 or younger, generally speaking) survive.
That’s good news, of course. The bad news is that all cancer treatments—chemotherapy, radiation, blood and marrow transplant, and surgery—can lead to late effects. The type and severity of such late effects can depend on the kind of cancer treatment(s), the patient’s age at the time, and other individual factors. But typically, the younger a person is at the time of treatment, the more severe the late effects can be.
That underscores how critical the growing field of cancer survivorship care has become and how important the decades-old cancer survivorship program at the Masonic Cancer Center, University of Minnesota continues to be.
The notion is not lost on Blaes. When she spoke about late effects at a cancer survivorship conference last spring, she asked for a show of hands: “How long have you been dealing with this? Five years?”
Countless hands went up. “Ten years?” Many, many hands. “Fifteen?” Dozens of hands. “I went up to 20,” she says, and still, quite a few hands went up.
“A handful of people came up to me after [my talk] and said, ‘You needed to ask me about 30,’” Blaes says.
Generations of learning
Jeanne Blum is one of those three-decades survivors. She was treated for Hodgkin lymphoma at 21 and later underwent painful and elaborate treatment for tongue cancer, probably a late effect of her lymphoma treatment.
“I got literally blasted with radiation,” Blum says. “There’s a lot of things they know about treatment now that they didn’t know then.”
Cancer physicians know now, for instance, that treatment involving radiation—like what DuRoche and Blum received—increases the risk of secondary cancers, so doctors today try to minimize that exposure. They also know now that certain types of chemotherapy can cause heart failure. So they avoid those chemotherapies whenever possible.
But still, there’s much to learn. A new study led by Lucie Turcotte, M.D., M.P.H., an assistant professor in the Medical School’s Department of Pediatrics and a pediatric hematologist-oncologist at University of Minnesota Masonic Children’s Hospital, set out to learn whether childhood cancer survivors who had chemotherapy but no radiation have the same risk of future cancers as people who never had cancer. Researchers combed through data in the landmark Childhood Cancer Survivor Study—started at the U in 1994—to compare the two groups.
The results were a mixed bag. The good news: Survivors of childhood cancer who were treated only with chemotherapy have a substantially lower risk of future cancer than do survivors who had radiation (7.4 percent vs. more than 13 percent). The bad news: Their risk of cancer was still nearly double that of the general population.
Turcotte says the study underscores the need to counsel childhood cancer survivors about vigilant follow-up care. Cancer survivors, and especially those who received treatment as children or young adults, need specific screenings throughout their lives to find and address any late effects—before they become crises.
Blaes, who directs Cancer Survivorship Services and Translational Research for the Masonic Cancer Center, and her team are working on a couple of mobile applications aimed at helping patients make the most of follow-up care, prevent and detect late effects, and connect with other survivors for support. They’re also investigating how and why many survivors experience a multitude of chronic health conditions at earlier-than-expected ages.
These efforts are supported by the Minnesota Lions’ new Lions Childhood Cancer Foundation, which is raising $100,000 this year to advance survivorship research and care at U of M Masonic Children’s Hospital. Children’s Cancer Research Fund and the University of Minnesota Foundation are matching the Lions’ donation.
As the number of cancer survivors increases, so does the knowledge about enhancing their quality of life in what Blum calls “the new normal.” The Masonic Cancer Center is a big contributor to that knowledge, and a leader in assembling the resources survivors need in a way that’s comprehensive and seamless.
“They said, ‘This is what we know about the treatment you had; here are the various people you need,’” Blum recalls. “To have all of that in one place, and not have to figure out all of these different things [by yourself], is wonderful.”
That’s great news for families like the Vaiths. Brooklyn Vaith, diagnosed with leukemia as a toddler, is now a spunky 6-year-old who recently celebrated one year as a cancer-free kid. Following a chemotherapy regimen that spanned 859 days, Brooklyn now enjoys reading, drawing, playing tee ball, taking gymnastics classes, and playing with friends.
And as she grows up, “Dr. Lucie” [Turcotte] and team will keep a close watch for late effects—and connect the family with any resources they should need.
“I just can’t say enough about her team of doctors and nurses,” says Brooklyn’s mom, Michelle Vaith. “They have done such a great job of communicating with us as a family—what to look for as signs of recurrence or issues that may come up after treatment, looking out for what’s coming next. After you do all that to her little body, it feels very reassuring.”
Make a gift to support childhood cancer survivorship research, or learn more by contacting Jen Foss of the University of Minnesota Foundation at 612-626-5276 or email@example.com.