In 2013, the television show host from HGTV’s Flip or Flop, Tarek El Moussa, received a concerned email from a fan of the show. The email came from an experienced registered nurse to tell him that while watching the show she noticed a lump in the front of his throat and was extremely concerned the star may have thyroid cancer. She urged the star to see a doctor and get a thyroid biopsy. Thankfully, the star heeded her advice, as she was indeed correct and he was diagnosed with thyroid cancer that had already spread to lymph nodes. Shortly thereafter, the host underwent treatment for thyroid cancer; four years later he is in remission. At the time of diagnosis, he was 31.
According to the American Cancer Society, the most common group diagnosed with thyroid cancer is 45-54 year olds, affecting three times more women than men. Thyroid cancer accounts for 3.4 percent of all cancers and will result in about 2,010 deaths this year, and is the most common cancer in young Americans (age 16-33); the very age group in which El Moussa was at the time of diagnosis.
The high prevalence of thyroid cancer in adolescent and young adults provides the impetus for an understanding of the specific challenges this population experiences in receiving care. Researchers at Mayo Clinic, along with external collaborators, reviewed the epidemiology and challenges of thyroid cancer care among young people, and proposed a research agenda to improve their care in a recent special report in Future Oncology.
Senior author and endocrinologist, J.P. Brito Campana, M.D., explains, “Adolescent and young adults with thyroid cancer face challenges including overdiagnosis, reduced access to health care and inconsistent care. Successful treatment of these patients results in additional challenges, due to ongoing side effects of treatment, as well as lasting impacts on their quality of life.”
For example, inconsistent care is partially a byproduct of a shortage of pediatric endocrinologists available to care for adolescents or young adults with thyroid cancer; leading to treatment by a physician inexperienced in treating this age group. Care disparities for younger patients also can exist because this age group tends to be more financially unstable, which coupled with complex insurance barriers, can result in fragmented and expensive care. Young adults are more likely to experience bankruptcy than their counterparts without cancer due to the high cost of treatment and survivorship care. Side effects of treatment are also problematic: those that receive radiation treatment are placed at increased risk of secondary cancers such as leukemia and salivary cancer.
Given the prevalence of thyroid cancer in adolescent and young adults, one would assume that the field would be saturated with research focused on understanding this population, but Dr. Brito Campana explains, “Information about thyroid cancer in adolescent and young adults is remarkably sparse. Indeed, a literature search resulted in only 19 papers, which strongly suggests that the burden of thyroid cancer in this population has not been adequately studied.”
Dr. Brito Campana and his colleagues believe these challenges and lack of applicable research should fuel a collaborative research agenda aimed at improving the quality of care for adolescent and young adults with thyroid cancer across the spectrum of diagnosis, treatment and survivorship.
The research team urges their research colleagues to:
- Study the impact of over and under diagnosis and factors related to increased incidence;
- Identify socioeconomic factors and disease specific characteristics influencing access to care; and
- Conduct effectiveness and pharmacovigilance research, promote appropriate referral and treatment, create and support a robust research infrastructure.
Related Mayo Clinic resources: