Despite advances in early detection, treatment and prevention, cancer is the No. 1 disease killer of adolescents and young adults (AYAs), people aged 15-39. An estimated 72,000 AYAs are diagnosed with cancer annually, and about 10,000 of them die of these diseases each year.
AYA survival has not improved at the same rates as it has for other age groups. The reasons include unique tumor biology, less access to clinical care, inadequate insurance coverage, feelings of invincibility, delayed or missed clinical diagnoses and lack of awareness that cancer is a leading cause of death for the age group.
Also, cancers in AYAs may be biologically different than the same cancers in children and older adults, and a lack of research and low clinical-trial participation make it difficult to identify suitable treatments. Finally, once treatment is completed, AYA survivors can find it difficult to make friends, to date, to get careers and finances back on track and to have children.
The OSUCCC – James survivorship program works in partnership with specialists at Nationwide Children’s Hospital in Columbus to meet the diverse needs of this unique patient population.
“These young patients are our future, and we are working to help them live longer and better lives after diagnosis, and we do so through dedicated treatment and research programs,” says Maryam Lustberg, MD, MPH, medical director for survivorship at the OSUCCC – James.
“We strive to address the unique needs of the AYA population,” Lustberg adds. “As we further expand our program, we hope to provide additional AYA-specific services to address social, psychologic, fertility, and family and return-to-work issues throughout the cancer continuum.”
Optimizing reproductive potential is an important goal of the program, says oncofertility specialist Leslie Appiah, MD, associate professor clinical of Obstetrics and Gynecology at The Ohio State University Wexner Medical Center.
“We see both male and female patients at diagnosis to discuss the risk their treatment regimen poses to their fertility,” says Appiah. For fertility concerns, the program follows female AYA survivors through age 45 and male survivors through age 50; otherwise, the AYA program follows survivors through age 39.
Appiah provides care for female patients; Lawrence Jenkins, MD, clinical assistant professor of Urology and a specialist in male reproductive health, cares for male patients.
Appiah and Jenkins collaborate with local reproductive endocrinology and infertility providers to offer pretreatment assisted reproductive technologies that include egg and embryo freezing and sperm banking. “When pretreatment measures are not an option,” Appiah says, “we discuss fertility-preservation choices that can be implemented after treatment. Equally important, we provide reassurance for those patients who are not at risk of infertility after treatment.”
Contraception is also important. “Contraception is a widely under-appreciated aspect of oncofertility,” Appiah says. “We want to be sure that AYA patients use contraceptives appropriately and understand the implications of an unplanned pregnancy either during or after treatment.”
The program also addresses late effects of cancer treatment that affect quality of life, such as ovarian or testicular failure and radiation injury to the reproductive organs. In women, these changes can lead to hot flashes and an inability to engage in sexual activity; in men, they can cause fatigue and sexual dysfunction, and reduce endurance. In both women and men, they can reduce bone-mineral density, leading to osteoporosis.
The goal of the program, Lustberg and Appiah add, “is to reach these young people before they begin treatment and help them maximize their quality of life as cancer survivors.”