In Dec. 2017, Robert Russell brought donuts to the nurses on all three wards of the ninth floor of Duke Hospital — his tradition for the past three years. He says it’s the least he can do for those who saw him through the “scariest” couple weeks of his life, which began with an HPV-associated tonsil cancer diagnosis.
Tough Love And Healing For Tonsil Cancer Survivor
In December 2017 Robert Russell brought donuts to the nurses on all three wards of the ninth floor of Duke Medical Center — something he’s been doing regularly for the past three years. He started the tradition because he says it’s the least he can do for those who saw him through the “scariest” couple weeks of his life.
In July 2014, at age 52, Russell was diagnosed by Duke surgical oncologist Ramon Esclamado, MD, with advanced-stage human papilloma virus (HPV) associated squamous cell carcinoma of the oropharynx.
The oropharynx is the middle part of the throat, which includes the soft palate, the base of the tongue, the tonsils, and the side and back wall of the throat.
The first symptoms of oropharynx cancer are typically a lump in the neck, a sore throat and/or ear pain although oropharynx cancer can also be asymptomatic. Physicians say self-awareness and regular visits to the dentist, who does a thorough oral exam, are key to early detection.
Russell had a sore throat and had been coughing up blood for six or seven months by the time he was diagnosed. When his symptoms didn’t go away, following visits to two different primary care physicians, he had asked his wife to look down his throat.
“I think she passed out,” he recounted. “My tonsil was hanging inward and my throat was in bad shape. I went to my ENT doctor the very next day and he said he thought it was cancer, but not bad cancer, and referred me to Duke.”
Tough Love
Esclamado, radiation oncologist David Brizel, MD, and medical oncologist Frank Dunphy, MD, (now retired) initiated an intensive 7 week treatment plan consisting of radiotherapy and concurrent chemotherapy.
However, part-way through this outpatient regimen— Russell, increasingly weak, began battling nausea and loss of taste.. He was admitted to the hospital to help manage his symptoms and continued with his treatment during this period.
“It was to the point where I was asked, a few times, if I wanted to talk to a preacher and I finally said yes,” Russell, a father of three, said. “That was scary. I believe in God, but I wasn’t sure what God thought about me.”
He completed therapy, returned home in September 2014 and was scheduled for regular follow-ups. He went back to work at his two jobs that December — selling Hondas and Atlantic Breeze shutters — but something wasn’t right. His throat and tongue was so raw it burned, he still had no sense of taste, and he didn’t want to eat.
“The first time I went back to see Dr. Brizel for a follow-up, he said ‘Robert, your cancer is gone, but if you don’t eat, you’re going to die, and everything that you’ve gone through will have been in vain,’” Russell recalled.
“Deep-Sea” Healing
Russell, who describes himself as “hard-headed,” said Brizel’s “tough love” message got through. He started eating again, but couldn’t gain weight, so Brizel advised a feeding tube. Brizel also recommended Russell try hyperbaric oxygen — a unique therapy that uses pressurized oxygen to enhance the healing of the irradiated tissues in his pharynx that were not healing well.
“If that didn’t work, I may have needed surgery,” said Russell, who ended up making the “dives” in a The Duke Hyperbaric Chamber, at a pressure equivalent of being under 33 feet of sea water, twice-a-day for 35 days. “Thank God it worked.”
About a week after he returned home, his pain largely went away and he got his sense of taste and appetite back.
Rising Cases
While the HPV-associated oropharynx cancer that Russell survived remains a relatively rare cancer in the United States, it’s now constitutes the most common type of head and neck cancer and the number of cases is rising, some say to epidemic proportions.
As many as 80 percent of oropharynx cancer cases, like Russell’s, are caused by HPV, the most common sexually transmitted infection in the country. Actor Michael Douglas made headlines when he announced in 2013 that he had treated for HPV-associated oropharynx cancer in 2010.
Most HPV-associated oropharynx cancer patients that Brizel and his colleagues see at Duke are relatively young and male; in their 40s to mid 50s, with some in their late 30s. More males than females, by a ratio of four to one, get this cancer according to the Centers for Disease Control and Prevention, which estimated that about 13,200 new cases are diagnosed in men and 3,200 in women each year nationwide. Importantly, this disease is not associated with smoking.
It takes many years for an HPV infection to result in cancer, if it does at all, explained Brizel, who co-directs the Duke Cancer Head & Neck Cancer Program.
“The changes happen at a cellular level and you go from pre-cancer to a cancerous condition,” said Brizel. “The overwhelming majority of people who get infected with HPV clear it from their immune system. A small proportion of people don’t, and they are the ones who go on to develop the disease.”
Brizel said there’s some data suggesting that the reason more men than women get HPV-associated oropharynx cancer is because not all men mount as vigorous of an immune response as women, though nobody really knows why that is.
The HPV-associated oropharynx patients Brizel sees are too old to have had access to any of the new HPV vaccines, the first of which hit the market in 2006. While the vaccination is indicated up to age 26, the American Cancer Society currently recommends routine HPV vaccination for females and males starting at age 11 or 12 years — before they are sexually active — to protect against HPV infections that can could eventually lead to several cancers and pre-cancers. In addition to oropharynx cancer, various strains of HPV can cause cancers of the cervix, vagina, vulva, and anus, and the vaccine effectively protects against these diseases too.
The vaccine can be “nearly 100 percent effective” against HPV-associated oropharynx cancer, Brizel said, if given before teens are sexually active.
Evolving Treatment
Standard-of-care treatment for oropharynx cancer, meanwhile, is still evolving, said Brizel. Depending on the stage and extent of the disease, patients may be treated with radiotherapy and chemotherapy, like Russell was, but some may be well-treated with radiation alone, and some may be treated adequately with surgery alone or surgery and radiation without chemotherapy.
Oropharynx cancer that’s associated with HPV usually has a very favorable prognosis, more so than many other types of head and neck cancers and other cancers in general, said Brizel, with tumors less likely to recur than those not linked to HPV infection.
“Because the prognosis is very good and conventional therapies are extraordinarily effective, recent efforts have been focused on trying to figure out how to reduce the intensity of therapy so that we can reduce negative side effects of treatment — which is what Robert Russell had — without compromising the effectiveness of the cancer treatment,” said Brizel.
For example, Brizel and his team are now looking at the use of PET scanning during treatment to see if they can identify patients that don’t need as much radiation or chemotherapy. And they’re currently conducting a trial with a radiation protective drug that was developed at Duke to reduce some of the side effects of treatment.
Russell has been cancer-free for three years. He’s gained all his weight back, and eats pretty normally now, though he has to drink a lot of water. He has lingering tinnitus in his ear, a side-effect of his chemotherapy. He continues to enjoy a good game of golf and walks on the beach. He also said that with his physical appearance slightly altered by the disease he’s “not as confident as he used to be.”
The good news, he said, is that his care team has told him he can be “cautiously optimistic” about his prognosis.
“All my doctors were just amazing,” he said, adding that he also appreciated the hugs he got from the lady at the check-in counter, the gospel songs sung by the parking garage attendant, the church volunteers at Caring House who served him “the best meal of his life” (mashed potatoes), and of course, those ninth floor nurses.
“I actually enjoy going back to Duke, since I found out I was ok,” said Russell, who returns for follow-ups every six months. “And I like talking about my experience now because I know I’m lucky to be here and I want people to know.”
Related News
In August 2023, a team of volunteers led by Trinitia Cannon, MD (third from left), Leda Scearce, CCC-SLP, MM, MS, and Dina Abouelella, MPH, which also included Tammara Watts, MD, PhD (center) and Katharine Ciarrocca, DMD, MSEd, partnered with North Raleigh International Baptist Church and Duke Raleigh Hospital to offer head and neck cancer screenings. Dozens of families from the Cedar Creek Apartment Complex community came out for the free screenings, education, and games, and Duke Raleigh Hospital donated backpacks full of school supplies.
TheDuke University School of Medicine Department of Head and Neck Surgery & Communication Sciences (HNS&CS) recently launched Project CHECKERS (Community Head and NEck Cancer Knowledge, Engagement, Research and Screening) a Duke Cancer Institute-funded pilot project to bring head and neck cancer resources and education to the broader Durham community.
Led by DCI head and neck surgeon Trinitia Cannon, MD, an associate professor in the Department, the project will be the Department’s first community-based participatory research project and the first such head and neck cancer screening and cancer prevention education project in North Carolina.
Evolving Community Research
The Project CHECKERS team will use a mixed methodology, which includes traditional surveys and screenings as well as interviews and focus groups.
One of their community partners will be the Cedar Creek Apartment Complex community in North Raleigh. Many of these families are refugees — from at least seven different countries in Africa, Asia, and the Middle East — who speak Farsi, French, Swahili, Arabic, and other languages. They are building new lives in North Carolina, in a culture and language that is new to many of them. As is the case with many similar communities, their healthcare needs often go unmet.
The investigators believe that, compared to traditional methods, mixed-method research is an improved way to establish a community partnership, highlight gaps in the community’s knowledge and risk perception, and pave the way for successful future health interventions.
According to co-PI Nosayaba (Nosa) Osazuwa-Peters, BDS, MPH, PhD, an associate professor in the Department of Head and Neck Surgery & Communication Sciences, Project CHECKERS takes an important step in improving community engagement.
“Traditional research is very systematic, very top-down. The researchers have knowledge and decide what they believe the community needs. But these outside scientific experts do not know the values, the culture, the knowledge, or the risks inherent in that community,” he explained.
For example, traditional surveys restrict participants to answering either yes or no; for many people, that binary does not tell a complete story.
“Project CHECKERS will help us understand the lived experiences of people in these communities,” added Osazuwa-Peters. “We’ll learn about context, and we’ll learn to ask questions that allow community members to express themselves. We’ll get responses we would never get based on yes or no.”
Building a Partnership
Project CHECKERS kicked off this fall with focus groups and interviews with community members facilitated by Laura Fish, PhD, MPH, assistant professor in Family Medicine and Community Health, Duke University School of Medicine, and program director for the Behavioral Health and Survey Research Core (a DCI shared resource). An advisory board will provide feedback from both clinical and community perspectives.
Lessons learned from these conversations will help the team develop a knowledge and risk factor survey that will be administered during two head and neck cancer screening events with the community in 2024.
The CHECKERS team will also recruit providers outside the department to participate in these events to address other health concerns in the community such as primary care, mental health, and women’s health.
The long-term goal of Project CHECKERS is to show the benefits of tailoring head and neck cancer screening programs to the communities being served, and how that personalization can improve prevention, early detection, and overall survival in high-risk individuals who have limited access to care.
Noted Osazuwa-Peters, “The mixed-methods framework helps us understand not just whether an intervention works, but how, why, and for whom.”
Community Partners
Another plus to mixed-methods research is its appeal to community partners who might otherwise be hesitant to work with researchers.
“The design places a high value on the stories behind the numbers,” explained Cannon, “so these projects are especially attractive to community partners such as faith-based organizations, whose priority is improving practice and outcomes, more so than research and advancing knowledge.”
Project CHECKERS will provide a valuable bridge between Duke and the North Raleigh International Baptist Church (NRIBC), which ministers to a large immigrant community. NRIBC’s Pastor, Patrick Warutere, invited Duke to participate in the church’s inaugural Health and Dignity for All Fair in Raleigh in 2022. Cannon and CHECKERS co-PI Leda Scearce,CCC-SLP, MM, MS, a Duke speech pathologist and director of Community Engagement for the Department of HNS&CS, recruited nurses, medical students, and resident volunteers to provide HNC screenings for the event.
“We immediately felt a kinship with NRIBC’s Pastor Patrick Warutere and his leadership team,” shared Searce. “By the end of the day, we knew we wanted to continue to work together and set up a meeting the following week.”
Duke HNS&CS and the NRIBC team worked closely to develop the research plan and ensure that the goals and expectations of each group were aligned and transparent.
“That relationship with NRIBC has enabled us to incorporate the community’s perspectives into the development of Project CHECKERS,” said Scearce. “Our aim was to amplify the assets and expertise of the community members themselves.”
Cannon anticipates that Project CHECKERS will become a framework for future projects.
“We are looking forward to similar initiatives in hearing health for older adults, right-hemisphere stroke awareness, and more.”
Breast surgical oncologist and Mary and Deryl Hart Distinguished Professor of Surgery Eun-Sil Shelley Hwang, MD, MHS, with Oluwadamilola "Lola" Fayanju, MD, MA, MPHS, FACS, in early 2020.
Dr. Hwang was Chief of Breast Surgery at Duke at that time and Dr. Fayanju was an assistant professor of Surgery, Division of Surgical Oncology. Dr. Fayanju is currently Chief of the Breast Surgery Division at Penn Medicine.
A study initiated at Duke University School of Medicine lays bare significant racial and gender disparities in America’s surgical leadership.
Of the 2,165 faculty members included across 154 departments, men overwhelmingly claimed the top spots in surgical leadership, making up 85.9% of department chairs, 68.4% of vice chairs, and a staggering 87% of division chiefs.
What’s more a mere 8.9% of these leadership roles were filled by those from underrepresented racial or ethnic groups.
While women made a modest showing as vice chairs at 31.6%, they remained underrepresented elsewhere. Many of these women and those from underrepresented racial or ethnic groups were clustered in roles linked to diversity and faculty development, which might not pave the way to top department positions.
The study in JAMA Surgery — led by Oluwadamilola “Lola” M. Fayanju, MD — stands out because the research team of surgeons, trainees, and biostatisticians looked in detail at different leadership roles and the implications these disparities have for the pipeline to department chair.
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