Karen Kinahan and Julia Stepenske Karen Kinahan (left) and Julia Stepenske at an event celebrating the STAR program's tenth anniversary. The STAR program provides comprehensive long-term care for adult survivors of childhood cancers at Northwestern University's Lurie Comprehensive Cancer Center.
'Last summer I was diagnosed with bilateral Avascular Necrosis in my hips from all of the prednisone I received throughout the years [of chemotherapy]. In the fall I had core decompression on my left hip and it was pretty useless in resolving my chronic bone pain.… Because of my age (21) my orthopedic surgeon does not want to perform hip replacement surgery and I feel like I'm sort of just stuck with the pain without any resolution.'
—Post on stupidcancer.com forum
Cataracts, hearing loss, chronic pain, amputation, hypopituitarism, osteonecrosis—these are just a few of the many late effects of cancer and its treatment that survivors can experience. For survivors of adolescent and young adult (AYA) cancers, these conditions can mean a lifetime of disability. Survivors of AYA cancers, like their pediatric counterparts, are also at increased risk for life-threatening problems such as second primary cancers and cardiac conditions, as well as psychiatric issues such as post-traumatic stress disorder and depression.
Unfortunately, studies indicate that many survivors of AYA cancers are often unaware of or underestimate their heightened risk for late effects; the same is true of many of the doctors and health care providers these survivors see after leaving the confines of active cancer treatment and follow-up.
For a number of reasons, research on AYA survivors has lagged. With nearly 70,000 AYAs diagnosed with cancer every year, the dearth of data can have serious consequences. 'Significant knowledge gaps impede the care of this high-risk population,' Drs. Kevin Oeffinger and Emily Tonorezos of Memorial Sloan-Kettering Cancer Center recently wrote in Cancer.
But positive changes are afoot.
More pediatric hospitals and cancer centers, for example, have established units tailored to help survivors deal with the long-term and late effects of care. The Children's Oncology Group (COG) has also developed an array of resources, including clinical guidelines for monitoring and treating common late effects in pediatric and AYA cancer survivors. Various advocacy and support organizations—such as Planet Cancer and the I'm Too Young for This! Cancer Foundation, among others—have programs to help AYA patients and survivors.
And some studies have been launched to test different ways to reach out to AYA survivors and help them take the necessary steps to monitor their health and ensure that they don't exacerbate the risk of late effects.
'That's an important part of what we need to do—move on to intervention studies,' said Dr. Greg Armstrong of St. Jude Children's Research Hospital. 'We've described the problems. Now we need to test ways to step in and intervene on them.'
Treatment Can Be a Life Saver and a Life Changer
Numerous studies, including many from the Childhood Cancer Survivor Study (CCSS), include AYA participants and 'have opened up the black box of long-term survivorship by describing what it really looks like to be an adult survivor of not only childhood, but adolescent and young adult cancer,' Dr. Armstrong said.
Just last month, a study from the CCSS led by Dr. Armstrong showed that survivors treated during childhood or adolescence have an increased risk of not just second cancers, but third and fourth cancers. The study also identified the development of nonmelanoma skin cancer as an important risk factor for new cancers in this population.
Such findings and studies are a step in the right direction. But what's also needed is a more sophisticated understanding of late effects in AYAs, stressed Dr. Jackie Casillas, a pediatric oncologist and associate director of the Patients and Survivors Program at the UCLA Jonsson Comprehensive Cancer Center.
'We need to understand what's happening at the biological level that produces these late effects,' she said. A better understanding of the biological mechanisms by which treatments are causing late effects 'can help to identify possible interventions, including pharmacologic and behavioral interventions' that may curtail those risks, Dr. Casillas said.
Many survivors of AYA cancers are often unaware of or underestimate their heightened risk for late effects.
Studies that aim to help prevent late effects in AYA survivors or minimize their impact are being launched. At St. Jude, for example, a study is under way to promote the use of telephone quitlines to survivors of pediatric and AYA cancer who smoke.
And at the City of Hope Comprehensive Cancer Center in Duarte, CA, Dr. Melanie Palomares and her colleagues have launched a clinical trial to determine whether treatment with low-dose tamoxifen can reduce the risk of breast cancer in female survivors of pediatric and AYA Hodgkin lymphoma.
These women are at increased risk of breast cancer because of the radiation treatments they received to the torso area, according to Dr. Smita Bhatia, director of the Center for Cancer Survivorship at City of Hope and COG associate chair.
Awareness and Monitoring are Critical
Diagnosed at age 18 with Burkitt lymphoma, Joe Schneider recalls the short but grueling high-dose chemotherapy treatment he received as part of a clinical trial at the NIH Clinical Center. The vomiting, fatigue, and other effects of the chemotherapy were far worse than he had anticipated. 'If this comes back, there is no way in hell I'm going to go through treatment again,' Schneider, now 35, remembers thinking.
After surgery for a small, localized recurrence and 3 years of monitoring, his time in the cancer system, so to speak, was completed.
'They were like, 'Now you're on your own,'' he said. 'I didn't really know what that meant.'
Schneider's experience of more than a decade ago is not uncommon today, Dr. Casillas acknowledged. 'Many survivors of AYA cancers are not receiving risk-based, long-term follow-up care when they transition from completion of active treatment to the survivorship phase of care,' she said.
Depending on the type of chemotherapy regimen they received, for example, many AYAs should be routinely monitored for cardiovascular problems like high blood pressure and congestive heart failure, she explained.
The approach to monitoring and surveillance for late effects should be tailored to the types of treatments survivors received, Dr. Bhatia stressed. 'For the vast majority of late effects, there is a very clear relationship with specific chemotherapeutic agents and radiation exposures,' Dr. Bhatia said, such as the breast cancer risk in female Hodgkin lymphoma survivors.
Schneider, an active member of the cancer advocacy community, learned enough in his interactions with other survivors to realize that he needed to monitor his health more carefully. He enrolled in a long-term care program for pediatric cancer survivors and some AYA cancer survivors, called STAR, at Northwestern University's Lurie Comprehensive Cancer Center.
It wasn't until he enrolled in STAR, Schneider said, that he realized the high doses of the chemotherapy drug methotrexate that had been part of his cancer treatment could have a deleterious long-term impact on his bones.
Many survivors of AYA cancers are not receiving risk-based, long-term follow-up care when they transition from completion of active treatment to the survivorship phase of care.
—Dr. Jackie Casillas
Now in its tenth year, the STAR program offers comprehensive long-term care specifically for adult survivors of childhood cancers. STAR only accepts survivors who were diagnosed with cancer at age 21 or younger, explained Karen Kinahan, the program's clinical nurse specialist.
Approximately two-thirds of the STAR participants were treated at Children's Memorial Hospital in Chicago, which offers a pediatric version of the STAR program, said Kinahan, who works closely with the Northwestern program's medical director, Dr. Aarati Didwania, a general internal medicine physician, and Dr. Lynne Wagner, the adult program's clinical psychologist.
Survivors who enroll in STAR are seen at least annually and treated or directed to the appropriate specialists according to the COG clinical guidelines, Kinahan said. The program also includes a research component to assess outcomes such as quality of life and treatment effects, as well as an education component for survivors and their families about late-effect and long-term care issues.
'When many of the relatively older survivors, who have been dealing with their health problems on their own, find our program, they are really grateful,' Kinahan stressed. 'Many will say, 'I've been looking for something like this my whole life.''
Learning from History
Another initiative to improve the long-term care and quality of life of pediatric and adolescent survivors is the Passport for Care (PFC) program. Spearheaded at Texas Children's Cancer Center and the Baylor College of Medicine, the PFC is an Internet-based tool that provides a detailed summary of a childhood or adolescent survivor's cancer treatment history. This information is then plugged into an algorithm that generates tailored recommendations for monitoring and managing that individual's health, based on the COG guidelines.
'It provides all of the information that the survivor needs to know [and] what they need to guide their care through the rest of their lives,' explained Dr. David Poplack, director of Texas Children's Cancer Center, who co-developed the PFC program with Dr. Marc Horowitz, also of Texas Children's Cancer Center. 'Most importantly, it provides an opportunity to share that information with their physician. In effect, it makes any physician a cancer survivorship expert.'
National rollout has already begun, with over 20 institutions currently using the PFC. The tool is also now available to all COG institutions, and within the next year most COG sites expect to be using it, Dr. Poplack said. A 'survivor portal' that will include tailored follow-up guidelines and information, and an array of social media tools, is nearly finished.
The PFC addresses the needs of AYA survivors who were diagnosed with pediatric and adolescent cancers prior to age 21. As clinical guidelines are developed for survivors of cancers that affect young adults in the older age range of the AYA population, they will likely be rolled into the PFC, Dr. Poplack said.
—Carmen Phillips
Addressing Fertility Concerns for AYA Cancer Patients
Cancer treatments such as certain types of chemotherapy and radiation can pose a threat to fertility for both male and female AYAs with cancer. Although most young people will not be rendered infertile as a result of treatment, potential effects on fertility can be psychologically devastating, particularly if the effects are not acknowledged or addressed.
Indeed, the Science Task Force of the LIVESTRONG Young Adult Alliance recently identified issues regarding future fertility for AYA cancer patients as a high-priority research question for this population.
In particular, the task force focused on 'the communication that does or doesn't go on between health care providers, primarily oncologists, and patients about fertility risks of cancer therapy and the opportunities for fertility preservation,' said task force member Dr. Brad Zebrack of the University of Michigan. Those conversations should occur early on so that AYA patients can make informed decisions, yet physicians often do not initiate them.
In the clinic, researchers are testing strategies for preserving fertility for patients undergoing cancer treatment. Results of a randomized clinical trial published July 20 in JAMA showed that premenopausal women with early-stage breast cancer who took the synthetic gonadotropin-releasing hormone drug triptorelin during chemotherapy had lower rates of chemotherapy-induced early menopause than those who did not take the drug.
Twelve months after completing chemotherapy, the rate of early menopause was 25.9 percent among the 133 women in the chemotherapy-alone group and 8.9 percent among the 148 women in the chemotherapy plus triptorelin group.
For more information on fertility risk and fertility preservation for patients undergoing cancer therapy, read 'Preserving Fertility While Battling Cancer.'
—Elia Ben-Ari
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