Adult Survivors of Childhood Cancer & Cardiovascular Disease, Social Outcomes

January 28, 2010

On this blog, we have touched on topics and issues surrounding the needs of adult survivors of pediatric cancers (ASPCs). A few months ago, the Director of the HEROs Clinic at Yale, Dr. Nina Kadan-Lottick, published work she had done to assess the long term relational effects of childhood cancers by examining the marriage statistics of ASPCs and comparing those statistics to the general population and sibling matches. The scary truth is that researchers are continuously finding new and more complicated late effects of childhood cancers. While it is scary to hear about these late effects, it is important to understand the effects – to understand the origination of effects – to identify if you are at risk for these effects – because understanding what effects you are currently experiencing or may experience in the future makes treating and controlling the fallout much more effective.

Research has shown that ASPCs are at higher risk for experiencing cardiovascular disease and at higher risk for dying from cardiovascular disease, but a recent study published from the Childhood Cancer Survivor Study sheds new light on the subject. The Childhood Cancer Survivor Study is a study which has data on thousands of ASPCs and their siblings. Researchers compare the health effects of ASPCs to the siblings (because the siblings are similar to the ASPCs in many ways except the siblings did not have cancer). In this most recent publication, researchers were trying to determine what other risk factors (besides being an ASPC) could be identified when considering Metabolic Syndrome. Metabolic Syndrome is just a name that identifies a group of symptoms that lead to cardiovascular disease. The study’s results are clear; among ASPCs, older cancer diagnosis age, high levels of radiation, and lack of exercise are all associated with Metabolic Syndrome. Of those three identified factors, only one is within the current control of ASPCs. You guessed it….Exercise. So the take home message is get outside and get moving.

It might be tempting to focus our attention on the physical health effects of pediatric cancer, but as Dr. Lottick’s research reminded us, there are very serious long-term social and lifestyle implications of pediatric cancer. A recent study out of Sweden,, published in the journal, Cancer, caught my eye because it identified an important lifestyle effect, educational attainment, and it identified a group of ASPCs that might be at higher risk for poor outcomes in educational attainment. The study compared nearly 2000 ASPCs with the 1.46 million Swedish population, and the researchers concluded that ASPCs who had survived a central nervous system tumors were likely to have far less education, make less money, and be less likely to be employed when compared to both the general population of Sweden and when compared to non-central nervous system tumor survivors. Certainly this calls out to the medical community to develop safer and more effective ways to treat central nervous system tumors among pediatric cancer survivors, but what does it mean for ASPCs who are living now, having survived a central nervous system tumor. These survivors should absolutely discuss the situation with their current physician. There are treatments available to improve nuero-cognitive functioning, and the treating physician can suggest the best path in each unique situation. Again, the take-home message is nuanced. If you are an ASPC, and you are worried that your ability to concentrate or cognitively function has been affected, you should absolutely discuss this with your physician, but what if you aren’t sure if this applies to you. Well, don’t panic. You can still raise this issue with your physician, and the two of you can discuss diagnostic and treatment options.

Taking one more step back, it is also imperative to examine the challenges faced by current pediatric cancer survivors (and their caregivers) as they make the transition from pediatric care to adult care. Small observational studies have been performed to assess issues associated with this transition. Anecdotally, two themes have jumped out at me as I have read the literature. First, cancer carries a stigma with it. The nature of the stigma differs by survivor, by family, by cancer, and by age. It seems that many survivors want to “get on with life” and that feeling may be at direct odds with seeking survivorship care. Parents and caregivers of childhood survivors are not likely to be different. They too might feel an urge to get on with life, and that urge could lead caregivers to fail to push for ongoing survivorship care. In other words, survivors and caregivers may not want to be reminded of cancer, so they may avoid opportunities for survivorship care. The second theme that seems clear to me that is that young bodies treated for cancer are bound to have long-lasting effects. I don’t want to be morbid, but the late effects of childhood cancer seem to be inevitable. At the CT Challenge, our suggestion is to confront these elements by seeking out the survivorship services that are available. If your child is soon to transition out of active treatment or if your teenager is soon to transition from pediatric to adult care, speak to the physicians on both ends of the transition to develop a care plan that ensures the best possible outcomes for both the survivor and your family. In the following video, you can watch Dr. Nina Kadan-Lottick discuss this issue!