Sometimes I hesitate to tell people what I do for a living. This isn’t because I don’t love what I do (I do), but because the idea of kids with cancer seems to make people uncomfortable. Perhaps this is because they think of their own children and feel that urgent need to protect them, coupled with sudden gratitude that their own kids are healthy. Perhaps they think of the heartstring-pulling commercials featuring cute, bald children. Or, maybe they think of melodramatic movies where the patients with cancer always die. Perhaps they relive their own experiences involving older adults, friends or family members who suffered from cancer.
Regardless of their reasoning, the expectation seems to be that pediatric cancer must be sad. And sometimes, it is. But there’s also a lot of hope. So, in honor of Childhood Cancer Awareness Month, I thought I would take this opportunity to share what I think of kids with cancer below.
- Most will survive. This is true thanks to decades of collaborative clinical research taking place worldwide. For example, until the 1970s, almost all children with acute lymphoblastic leukemia (ALL) died. Then, physicians and researchers started pooling resources to generate a critical mass of data from which we could learn. They designed studies to rigorously test ideas and combinations of known chemotherapies. By the 1980s, survival rates were greater than 70%. Today, they are nearly 90%. We’ve made similar strides with almost all types of pediatric cancer.
- How they survive, and thrive, after cancer is important. There are more than 360,000 survivors of childhood cancer in the United States and this number will only grow as we continue to improve our treatments.1 For this reason, more research is focused on the experiences of patients after they complete their cancer therapy. We have learned that the cost of curing cancer can be high. More than half of childhood cancer survivors have at least one chronic health condition, including cardiovascular disease or secondary cancer.2 Likewise, cancer in childhood can impact other life experiences like school, employment, emotional health, starting a family and the achievement of social milestones. Compared to their siblings, childhood cancer survivors are less likely to go to college, more likely to be unemployed, and less likely to get married.3 Much of what we do on a daily basis and in our clinical research is try to minimize these costs and improve the long-term wellbeing, and resilience of our patients.
- Cancer is a family disease. No parent is unaffected by his or her child’s cancer. Normal responses include stress, worry, powerlessness, fear, frustration, uncertainty, hope and gratitude. Relationships and world views change – sometimes for the better. Parents often stop or cut back on work to care for their child. Some families move great distances to be close to Seattle Children’s during their therapy. This is not only emotionally and socially stressful, but it can also put significant financial strain on families. In one study of parents whose children were receiving bone marrow transplants, for example, 38% of parents reported either food, housing or energy insecurity due to their cancer experience.4 Cancer also impacts well siblings, who may feel neglected by the disproportionate attention paid to the patient. They may be scared, angry or vulnerable. They may be isolated. Their own sibling, family and peer experience will also, undoubtedly, change. Because of this, we include the whole family in our care decisions and support systems. And we conduct clinical research specifically directed at parents, siblings, families and patient-peers.
- Some children with cancer still die. This is unacceptable. And it is the single most important driver of all we do as pediatric oncologists. It is why we devote so much of our training and careers to the development of new drugs, targeted “personalized” agents, novel combinations of medications and other interventions. It is why we are so excited about the potential and ground-breaking results of recent immunotherapy research. It is why we continue to offer clinical trials to every patient we see: We believe we can (and will) do better.
So, the next time you think of pediatric cancer, please remember this: While there are moments of profound sadness and struggle, there are more moments of celebration and resilience. I hope you, like me, will be inspired.
Dr. Abby Rosenberg is the medical leader of Seattle Children’s Adolescent and Young Adult (AYA) Cancer Program. She is also a researcher in Seattle Children’s Research Institute’s Center for Clinical and Translational Research.
1. Mariotto AB, Rowland JH, Yabroff KR, et al. Long-term survivors of childhood cancers in the United States. Cancer Epidemiol Biomarkers Prev 2009; 18: 1033–1040.
2. Bhatia S, Armenian SH, Armstrong GT, et al. Collaborative research in childhood cancer survivorship: the current landscape. J Clin Oncol 2015; 33: 2055-3064.
3. Gurney JG, Krull KR, Kadan-Lottick N, et al. Social outcomes in the childhood cancer survivorship study cohort. J Clin Oncol 2009: 27: 2390-2395.
4. Bona K, London W, Guo D. Prevalence and impact of financial hardship among New England pediatric stem cell transplantation families. Biol Blood Marrow Transplant 2015: 21: 312-318.