In honor of April being Head and Neck Cancer Awareness Month, we wanted to catch up with Marci Nilsen, PhD, RN, CHPN, FAAN, who we featured a couple years ago and was recently named co-lead for our cancer center’s Biobehavioral Cancer Control Research Program. Learn more about her work in her own words.
Describe your research interests.
My research primarily focuses on understanding why patients with head and neck cancer experience different physical side effects from treatment, with a particular emphasis on co-occurring treatment-related effects. These patients are often treated with a combination of therapies, including radiation. While some report minimal changes in physical functioning, such as slight limitations in neck mobility, others experience severe and persistent issues, including chronic pain, tightness, muscle spasms, and, in some cases, difficulty swallowing. My goal is to better understand these variations and the underlying factors that drive them, such as changes in microRNAs, which regulate gene expression, in order to improve supportive care, enhance long-term outcomes, and ultimately help prevent or reduce these side effects.
Given the complexity of treatments that patients with head and neck cancer undergo, I am also deeply interested in how we can deliver high-quality, patient-centered care that addresses not only their physical needs but also their psychological well-being. To support this goal, we established a multidisciplinary head and neck survivorship clinic that brings together head and neck surgeons, nurses, dentists, physical therapists, dietitians, speech-language pathologists, and audiologists. Our research has shown that patients who are evaluated in our survivorship clinic before starting radiation therapy experience better quality of life, along with lower symptom burden and psychological distress at one-year post-treatment. We are continuously researching and testing innovative models of survivorship care to better support patients throughout their recovery journey.
What drew you to doing research, and specifically research in head and neck cancer?
During my research training, I had the opportunity to observe several of our head and neck surgical clinics. This experience allowed me to follow patients across the full spectrum of care—from those preparing for surgery to individuals who had completed treatment decades earlier. Most importantly, it gave me the time to speak with survivors and their loved ones. I was offered a glimpse into their stories and witnessed the complexity of their recovery, as well as their efforts to regain an aspect of normalcy.
Although the incidence of head and neck cancer is rising, mainly due to human papillomavirus (HPV), it still accounts for only about 4% of all cancers in the U.S. As a result, research on treatment-related sequelae, particularly how they develop and progress over time, has historically been limited. Recognizing this critical gap in care sparked the passion that continues to drive me: improving the lives and outcomes of head and neck cancer survivors.
What changes do you hope to see in the future of cancer research?
I’m excited to see the growing focus on survivorship care in both research and clinical practice, particularly through national initiatives such as the standards set by the National Institutes of Health. With a deeper understanding of the biological and genomic factors that contribute to persistent symptoms, I hope we can develop novel strategies to prevent or mitigate these issues before they arise. Our researchers at the University of Pittsburgh and UPMC Hillman are also actively working to develop novel approaches to de-escalate treatment, and I’m hopeful that these strategies will help reduce symptoms and treatment-related side effects.
What do you wish people knew more about H&N cancer?
Prevention is key! Quitting smoking and smokeless tobacco, limiting alcohol consumption, and getting the HPV vaccine can significantly reduce the risk of developing head and neck cancers. If you’re diagnosed with head and neck cancer, having a multidisciplinary team is crucial throughout your cancer journey—not only for treatment but also for recovery.
