TLC-Childhood Cancer Survivorship Program
In recognition of September being Childhood Cancer Awareness Month, SMA revisits the 2013 interview with Dr. Kimberly Whelan who discussed the Taking on Life After Cancer (TLC) Childhood Cancer Survivorship Program at Children’s of Alabama, the only multidisciplinary clinic in Alabama specifically for survivors of childhood cancer.
As survival rates for childhood cancer continue to rise and the outlook for survivors continually improves, there is now increased interest in, and emphasis on, the risks and complications related to survivors’ diagnosis and treatment. SMA had the opportunity to speak with Kimberly Whelan, MD, MSPH, Associate Professor of Pediatrics at the University of Alabama at Birmingham (UAB) and Director of the Taking on Life After Cancer (TLC) Childhood Cancer Survivorship Program at Children’s of Alabama the only multidisciplinary clinic in Alabama specifically for survivors of childhood cancer.
About the TLC-Childhood Cancer Survivorship Program
Established in 2004, the TLC program focuses on the needs of cancer survivors and helps educate them, as well as their families, regarding the aspects of the patient’s diagnosis and treatment. “We share with them the things that, at this time, we know they might be at risk for, which could be anything from fertility and cardiac complications to secondary cancers, and to really empower them to be advocates for themselves,” Dr. Whelan explained.
Treating survivors who are at least two years off treatment, the clinic has seen patients ranging in age from 4-49 years. The TLC program strives to help survivors lead successful lives by informing them and their families about their diagnosis and therapy; educating them about long-term effects of cancer treatment; screening for late effects; offering psychosocial support; and providing referrals to appropriate specialists when necessary. In meeting the needs of those they serve, the clinic staff are mindful of the relationships between the survivors and their physicians. “We don’t want to take over the role of the primary oncologist; they have a special bond with the family and with their patients.” Dr. Whelan said. “In a lot of cases, it’s really meant to be an educational and risk-based screening visit to let the family and survivor know the things that they need to be looking out for.”
With evidence indicating the potential for significant risks and complications associated with a patient’s diagnosis and treatment that can continue several decades beyond their initial cancer treatment, Dr. Whelan noted that a majority of childhood cancer survivors will likely develop a chronic disease by the age of 40 and of those, 25% could have a serious or life-threatening chronic medical condition, thus making follow-up treatment and care of utmost importance. “Many survivors may deal with multiple health conditions related to their diagnosis and treatment and that risk does not seem to plateau,” she said. “The risk for developing chronic conditions related to their treatment continues to increase as the survivors age.” Dr. Whelan further explained that risks are dependent on several things, including the age of the child at diagnosis, his underlying cancer diagnosis, and the types of treatment he received. She also indicated that certain therapies may yield greater risks and that some patients, such as brain tumor survivors, bone marrow transplant survivors, or some sarcoma survivors who were treated with more intensive therapies, are more at risk for having late complications of their treatment.
The majority of patients are referred to the program by their primary oncologist and the goal of the TLC program is for 100% of survivors to come for at least one clinic visit during which they receive a treatment summary that details their original diagnosis, known complications related to their cancer, surgeries they had, and the chemotherapy protocol and drugs that were used. “With drugs such as anthracycline agents, knowing the cumulative dose the patient received is very important in determining his risks for certain complications like cardiac dysfunction and how often he needs to be screened,” Dr. Whelan explained. Because communication among the medical team is key, survivors are not the only ones who receive the copies of the summary information. “We provide a copy to their primary care physicians because that’s where the majority of these survivors are being followed decades down the road,” Dr. Whelan said. “We want to let them know the details of the treatment and things that they may need to be aware of and screening for.”
Years of Progress
Dr. Whelan, who was in fellowship training at UAB when the clinic first opened, has witnessed its evolution over the past nine years. “There have been a lot of advances in the way that we treat children with cancer, particularly in trying to move toward more focused or targeted therapies that may potentially be less toxic down the road than our older chemotherapy agents,” she said. As with any new treatment regimen, Dr. Whelan acknowledges these therapies will require monitoring. “We do not yet have a lot of that long-term information and data to know what we will need to be aware of in regards to late effects.”
Therapy and treatment protocols are not the only things to have evolved since the program’s beginning. “Over the past decade there has been an increasing awareness among medical providers, the families, and the survivors themselves of the impact their cancer treatment could have on their current or their future health,” Dr. Whelan said. “We have certainly seen an increase in willingness from our pediatric oncologists to refer patients to come see us and receive [education] and risk-based screening.” Physicians, however, are not the only ones who can make referrals to the clinic. Survivors and their families also call or self-refer to the clinic due to problems they are concerned may be related to their past treatment or because they found information making them realize they needed to learn more about their treatment details.
Through her dedication to, and involvement in, the TLC program, Dr. Whelan recognizes changes that she herself has experienced. “What I’ve also come to appreciate is that when you’re talking to the family and the survivor [who is] 8 years old, you’re talking to the parents and then when [the survivor] is 18 or 20, you are having that conversation with the survivor herself,” she observed. “And what they’re concerned about at 8 years old, maybe school and neurocognitive issues, [is different] when they are 20, when they may be more concerned about future fertility.”
A Bright Future
Although much time at the TLC clinic is spent focusing on the high rate of chronic conditions, risks, and complications in survivors, Dr. Whelan said that data from the Childhood Cancer Survivors Study in which 9 out of 10 participants indicated “good” or “excellent” when asked to rate their quality of life and quality of health, have shown that the majority of survivors are doing very well. “This speaks to the fact that [many] of the late effects or complications that may occur are things that can be well managed and it also speaks to the real resiliency of this population as a whole,” she said. “There are so many survivors out there who are living their lives to the fullest and having a lot of success at it and they inspire me every day.”
Other articles in the Focus on Childhood Cancer Series:
In recognition of Childhood Cancer Awareness Month
