Adolescents and young adults who survive cancer are at an increased risk for post-treatment side effects, including cardiovascular problems, infertility, and secondary cancers. However, a recent study on youth cancer survivors shows that many young people in the United States are not following up with their oncologists once treatment ends, and the study may help explain why, the American Society of Clinical Oncology (ASCO) reports.

Currently, survivorship guidelines from ASCO and other leading cancer organizations suggest that all former cancer patients stay up to date with future checkups and cancer tests to help track the potential long-term effects of treatment and to stay healthy posttreatment. However, a study presented at the Cancer Survivorship Symposium this month in Orlando, Florida, found that the longer young survivors are from the end of treatment, the less likely they are to receive follow-up care at a cancer center. This was independent of health insurance status and disease type, leading to many questions from those involved in the research.

For the study, researchers analyzed data collected from more than 1,500 adolescent and young adult cancer survivors treated at Roswell Park Comprehensive Cancer Center. The most common types of cancers studied were leukemia/lymphoma, melanoma, germ cell tumors and thyroid and breast cancers. All survivors had been diagnosed between 2005 and 2014.

Ultimately, researchers found that 48 percent of people diagnosed between 2005 and 2009 did not have a follow-up visit in 2016, compared with 33 percent of those diagnosed between 2010 and 2014. Researchers also found that the more time had elapsed since patients had completed cancer treatment, the less likely they were to return for a follow-up visit. 

So what’s to blame for this? One theory is that young adults are unaware of their increased risk for long-term effects posttreatment. Another is that the cost of cancer treatment before and after recovery may be prohibitive. Either way, ASCO expert Timothy Gilligan, MD, moderator of the organization’s press briefing on the study said, “This highlights an important challenge in terms of trying to get cancer survivors to take advantage of what we know and what we can help with.” 

Moving forward, study authors say further research is needed to determine additional implicating factors for the lack of follow-up cancer care, including age at diagnosis and the type and intensity of the cancer treatment received.