Kristin Leonardi-Warren and Drs. Tim Garrington, Linda Overholser, Brian Greffe, Kristin Kilbourn and Alison Jones of CU Cancer Center’s TACTIC Clinic.
Story by Lynn G. Clark. Photos by Thomas Cooper.
Five caregivers sit at the round table in the internal medicine team room on the fifth floor of University of Colorado Hospital, a stapled pack of papers flipped open in their hands. The nurse coordinator, Kristin Leonardi-Warren, begins to tell the story: diagnosis at age 14, confusion about the type of cancer, the final settlement on Burkitt’s lymphoma. The treatments. The reported adult health issues. Pediatric oncologist Dr. Brian Greffe chimes in about drug dosing, answering a question of the internist, Dr. Linda Overholser. Pediatric oncologist Dr. Tim Garrington confirms the information. Psychologist Dr. Kristin Kilbourn follows along, considering how the cancer treatments may have impacted cognitive and psychological factors.
As the cancer caregivers discuss his case in the team room around the corner, Arthur Liu has his temperature and blood pressure checked by a nurse. She leads him to a long clinic room—cream walls, a desk at one end and the exam table in the center, with fluorescents overhead. He checks email on his phone as he waits for the doctor to arrive.
The scene could be unfolding at any multidisciplinary cancer clinic at the University of Colorado Cancer Center. The difference here: Liu is 39 years old. He is 25 years out from his diagnosis. He is a survivor of pediatric cancer, and a patient at the CU Cancer Center TACTIC clinic for adult survivors of childhood cancers.
Until about 40 years ago, cancer was a death sentence for most children. Even as late as the early ‘90s, focus was on a cure, not on what happened after the cure. Today, about 80 percent of children diagnosed with cancer will be alive five years later, or even decades later. The National Cancer Institute estimates there are 270,000 survivors of childhood cancer alive in the United States.
They have been saved by science administered by caring hands, treatments that killed the cancer cells and perhaps left scars that will not appear for years. These scars are called late effects: stroke, heart problems, infertility issues, secondary cancers and more.
“Survivors of childhood cancer have unique health care needs,” said Dr. Kerry Moss, a pediatric oncologist who is also trained in adult internal medicine. “Many people who had cancer as a child don’t remember it, or if they do, may not consider it important to their health today. After all, they survived, right? Or, they may simply not know where to turn for follow-up care.”
Creating something different
In the spring of 2007, Moss was looking for a project to finish her pediatric oncology fellowship at the University of Colorado Denver. She had been working in Children’s Hospital Colorado HOPE Clinic for young adult survivors of pediatric cancers, one of the oldest cancer survivorship clinics in the nation, and noticed that a lot of people in their 30s, 40s and even a 60-year-old had come to the clinic.
“The HOPE Clinic is staffed by people who know about the late effects of pediatric cancer treatment, but no one who is an expert in a 50-year-old’s heart problems,” Moss said. “Our network usually extends to other pediatric specialists who also don’t have expertise in adult medicine. My mentor, Brian Greffe, and I saw a need for something different. I put out a call for internists and others at the university who were interested in adult survivors of childhood cancers.”
Responding were Dr. Alison Jones, director of CU Cancer Center’s LIVESTRONG™ Cancer Survivorship Center of Excellence, and Dr. Linda Overholser, assistant professor of internal medicine at CU Denver and internist at University of Colorado Hospital. Greffe and CU Denver’s section head of internal medicine, Dr. Jean Kutner, joined the team to cement the vision of a clinic for adult survivors of pediatric cancers. The result is a unique collaboration between an NCI cancer center, a children’s hospital and an adult hospital, called Thriving After Cancer Treatment is Complete, or TACTIC clinic.
The planning team decided that patients would see one of two pediatric oncologists, an internist, a cancer psychologist and a nurse educator. If they needed help with nutrition or community resources, those experts were on hand at CU Cancer Center. The team sees up to four patients each month.
A transition clinic for adult survivors of childhood cancer
The TACTIC clinic is unusual in that it’s set in an adult care primary care environment rather than a pediatric oncology clinic as similar clinics in the United States are.
“Because we are dealing with adults here—adults who had cancer as children but adults nonetheless—it made sense to us to put the TACTIC clinic in the adult primary care setting,” Overholser said.
Jones said research shows most adults in their 20s and early 30s don’t have primary care providers, let alone someone who intimately knows their health care history.
“We think of TACTIC as a transition clinic as well, one that helps these adults who still may be seeing pediatric oncologists move to adult primary care providers,” she said. And she’s right. Already a handful of TACTIC patients have followed Overholser to her internal medicine practice.
Back at the TACTIC Clinic, Greffe joins patient Arthur Liu in the clinic room, going through his history and discussing current health issues. When Greffe returns to the team room, he’ll discuss any issues or thoughts with the rest of the TACTIC team, as will each of the providers after their visit with Liu.
When they are finished with the visit—which can take two to three hours—the care team may recommend Liu have certain blood work or other tests and offer referrals to adult specialists such as cardiologists, endocrinologists and counselors. Several weeks after the visit, Liu will receive a letter that outlines all the cancer medications and treatments he received as a child and their possible late effects and general health maintenance recommendations. His primary care provider, if he has one, will also receive a copy of the letter as guidance for future health surveillance.
“Some patients seem to have a good sense of the risks in general (from childhood cancer treatment) but usually don’t know the specific late effects associated with specific treatments they received, and their doctors don’t either,” Overholser said. “For example, girls who are treated with chest radiation for Hodgkin’s lymphoma have a much higher risk of breast cancer and may need to start having mammograms at age 25, depending on when they finished treatment, and they might also want to consider having children earlier because of a risk of early menopause related to having received chemotherapy.”
Kilbourn, the health psychologist, finds that pediatric oncology survivors often report traumatic memories associated with their cancer treatment.
“They are outside the window for their primary cancer to recur, but they may have heard they’re at risk for other health problems related to their initial cancer diagnosis,” she said. “They may also experience psychosocial challenges associated with their past treatment. Often they’re feeling guilty about the burden they placed on their family, the sacrifices made by their parents, as well as the lack of attention that their siblings received when they were sick. Sometimes you see survivor guilt, especially if they were treated in settings where they knew other children who didn’t make it.”
Kilbourn talks to the patients about their coping skills, self-care behaviors, social support and stress levels.
“We see people who had cancer at various developmental stages, which can lead to different effects on long-term coping abilities,” she said. “If you were 18 months old and had leukemia, you probably don’t remember. But if you were 13, at that critical stage when you are developing peer relationships and you were pulled out of school for a extended period to complete your cancer treatment, you may experience long-lasting difficulties forming and maintaining relationships. During clinics we ask questions about these topics and may refer patients for specific help.”
Research-based care plan
The TACTIC and HOPE clinic teams are advising patients based on strong scientific evidence coming out of The Childhood Cancer Survivor Study, a cohort of more than 13,000 childhood cancer survivors who were treated at 27 North American hospitals between 1970 and 1986. The study, which also followed 3,700 of patients’ siblings as controls, began in 1993 with the goal of better understanding the late effects of treatment.
Because treatment protocols have changed significantly since 1986, in 2007 the study identified a second cohort and will soon be enrolling another 14,000 patients who were treated between 1987 and 1999. In each study, investigators delved into patients medical records and engaged them in long-term follow-up to correlate late effects with specific types of chemotherapy, surgeries and radiation treatments.
“There have been scores of papers published so far with interesting results,” said Greffe, who is principal investigator of The Children’s Hospital’s study location. “For example, we learned that these survivors are much more likely to have chronic health issues than their siblings. These survivors also engage in risky behaviors such as smoking and alcohol use even when they may be at risk for long-term effects of their cancer therapy that may be exacerbated by these behaviors. These are important things to know as we counsel our patients, so we can educate and guide them.”
The clearest result of the initial study is a comprehensive list of common late effects—something that adult-onset cancer doctors have less knowledge of simply because they haven’t been studied as thoroughly in adults, Jones said. “But late effects for adults are becoming more and more important for us to understand because there are now more than 11 million adult cancer survivors in America,” she said.
“We know some things about older treatments, but there are so many brand new treatments for adult cancers now that we know nothing about in terms of late effects. It’s definitely a new area of emphasis both in research and in treatment.”
To that end, in January 2009 CU Cancer Center launched its first adult cancer survivor clinic, called THRIVE. That clinic runs similarly to TACTIC, and for now is being piloted with breast cancer patients who are transitioning from their oncologist to their primary care doctors.
“The THRIVE patients have different kinds of psychosocial issues than the TACTIC patients because they are dealing with the initial anxieties of losing their day-to-day care teams, and facing a future of uncertainty about recurrence,” Kilbourn said.
Overholser said THRIVE, like TACTIC, is an attempt to add one step to the continuum of cancer care. “Even if you have a cure, we’re beginning to treat cancer like a chronic disease, like diabetes for example, that needs regular monitoring,” she said. “Most primary care physicians don’t have the knowledge or the time to spend with their patients to thoroughly review all the aspects of survivorship care with patients returning their practice after cancer treatment. In our clinics, we can educate survivors and hopefully, help them educate their PCPs about preventing recurrences and other illnesses.”
Cancer Survivorship Research at CU Cancer Center
As a comprehensive cancer center, CU Cancer Center conducts research that extends beyond cancer biology and treatments and into cancer survivorship and cancer prevention. CU Cancer Center is one of eight centers designated by the Lance Armstrong Foundation as LIVESTRONG™ Centers of Survivorship Excellence. Here’s a taste of cancer survivorship research going on at CU Cancer Center.
Dr. Betsy Risdendal is working to identify factors that might predict why some people do better after cancer than others and to develop ways to better intervene and improve cancer survivorship and quality of life. She is also studying the effectiveness of the TACTIC and THRIVE clinics.
Drs. Anna Baron, Tim Byers and Risdendal are working on a long-term study of Latina breast cancer survivors, called the SUNSHINE Study.
Dr. Tom Beresford is investigating how psychological adaptive styles might predict who does well in cancer survivorship.
Dr. Ellyn Matthews is studying interventions for insomnia, pain, psychosocial distress and symptom management in cancer population. She has an NIH grant to test therapy for chronic insomnia after completion of breast cancer treatment.
Dr. Michael Galbraith’s research focuses on couples who are long-term survivors of prostate cancer, looking at quality of life and relationship, relationship satisfaction, intimacy, communication and symptoms.
Dr. Linda Burhansstipanov leads the Native American Cancer Education for Survivors project, which aims to improve quality of life for Native American breast cancer patients from diagnosis through treatment and beyond.