“I just want to be able to smile.”
In 2010, those words came from Evelyn, a favorite patient. She had tears in her eyes as we talked about our weekend plans at her hygiene appointment. Evelyn, a human papillomavirus (HPV) oropharyngeal cancer survivor, was going to a friend’s wedding that weekend. “Susan, I want to go to this wedding and have fun, laugh out loud, and take pictures. I just want to be able to smile like everyone else without the constant fear that someone will see what my teeth look like.” This cancer had devastated her mouth and teeth and affected her entire life. It wasn’t until that moment I realized just how much.
At that point, Evelyn had been my patient for about a year, and I was doing all I knew to help her manage the oral side effects from this cancer. Evelyn’s words gave me a sick feeling in the pit of my stomach. While she was headed to her friend’s wedding, I was going to Las Vegas to attend the Donny Osmond Fan Club Get Together with my sister and about 300 other fans. What was my concern? Are my teeth white enough? Compared to Evelyn’s concern, mine was downright silly. Evelyn weighed heavy on my heart that weekend. I hoped she was having a great time at the wedding.
As a teen, Donny’s pictures from Tiger Beat magazine were strategically placed on my bedroom wall, so interacting with him in person at his Get Together was surreal. While there, Donny announced the start of his Make a Difference program. He asked us to submit ideas of what we would do to make a difference in our communities, and before the weekend ended, he would select 10 to be a part of his program for the coming year. With Evelyn heavy on my heart, I knew immediately what my submission was: to raise awareness about HPV and oral and oropharyngeal cancer. As part of God’s plan, I was selected for this program. Donny gave us $300 and a camera and encouraged us to make a difference and to return the next year to present what we had accomplished.
I had no idea what would happen in the coming year. What I did know: Evelyn needed to be able to smile without the constant fear someone would see her teeth. I returned home with a profound sense of purpose and passion to raise awareness about HPV and oral and oropharyngeal cancer. I made the decision to change how I practiced—specifically, the importance I was giving to the extraoral/intraoral (EO/IO) exam. As a new RDH, I was always thorough with the EO/IO exam. However, as my hygiene career went on, I let the “busyness” of my day, a late patient, time constraints, required tasks, and production-oriented procedures take precedence. While I always performed the exam, I wasn’t as thorough and consistent as I once was.
Having been where I’ve been, there is no judgment in where other dental professionals are, only a desire to encourage others to change and to save lives.
Evelyn changed my life that day. Shortly after that, I set out on a journey to “be part of the change” in early detection.1 I joined the Oral Cancer Foundation (OCF) as a regional coordinator and started offering free screenings at community events. I also organized the first Oral Cancer Walk/Run in Colorado. We raised about $10,000 in 2011 to support OCF and the important work they do.
I often wonder if I had missed a patient’s lesion, sign, or symptom that should have been referred, or worse yet, if someone had died because of my choices. Sharing this story of an imperfect journey and why oral cancer has become my passion and purpose comes from a place of vulnerability, humility, and some shame in admitting my mistakes and imperfections as a dental hygienist. It is also a story of redemption of sorts in recognizing the need to change, making that change, and providing better care for my patients. Having been where I’ve been, there is no judgment in where other dental professionals are, only a desire to encourage others to change and to save lives.
The state of oral cancer
It has been 10 years since my conversation with Evelyn. In that time, progress in awareness has been slow. According to the OCF, approximately 53,500 Americans will be diagnosed with oral/oropharyngeal cancer in 2020, and of those diagnosed, approximately 57% will be alive in 5 years.2 While most cancers are on the decline, this cancer is continually on the rise and has reached epidemic numbers as a result of HPV-16. The OCF states that “historically the death rate of this cancer is particularly high not because it is hard to discover or diagnose, but due to the cancer being routinely discovered late in its development.”2
The toll on those who survive this cancer is high. They experience side effects that affect everyday functions, activities, and celebrations that we take for granted.
Screenings are still not done often or equitably enough. A 2011–2016 study of individuals age 30 and older who had seen a dentist in the last two years found that only 31% self-reported receiving an extraoral exam and 38% an intraoral exam. The study also found that individuals in minority ethnic groups, those with lower income and education levels, and those covered by Medicaid were less likely to receive an exam.3
The toll on those who survive this cancer is high. They experience side effects that affect everyday functions, activities, and celebrations that we take for granted: enjoying the taste of a holiday meal or any meal with family; loss of their voice; loss of a job; radiation-induced carotid stenosis; esophageal dilation to reduce choking incidence; addictions due to pain; financial ruin; continual anxiety that cancer will return; and disfigurement. Of those who survive the cancer, only 48% are able to return to work.4 Cancer patients have an increased suicide rate compared to the general population. In one study, the cancers with the highest suicide rate were lung and bronchus first, stomach second, and oral cavity and pharynx cancer third.5
Why I have hope
There are many days I am saddened by the state of oral and oropharyngeal cancer awareness in dentistry. Yet I have hope. Hope that one day persistent lesions and other signs and symptoms are referred immediately instead of being “watched,” and late-stage diagnosis is no more. Hope that one day saying the word “cancer” in the dental office will be seen as educating, not frightening, to patients. Hope that one day every team member will have the knowledge to discuss signs and symptoms, HPV, and etiologies just as easily as caries, whitening, and brushing and flossing.
I am hopeful that one day the dental hygiene appointment will no longer be shortened in the name of production, and the RDH will be given the time needed to perform the many lifesaving assessments, evaluations, and procedures we as health-care providers should be performing, including the thorough EO/IO exam and risk assessment.
I am hopeful that one day every office will value educating all team members about oral and oropharyngeal cancer and the synchronized EO/IO exam as much as handoffs and case presentations.
I am hopeful that one day, just as dental providers are required to renew our basic life support skills and education every two years, we will also be required to receive a regular hands-on review of the EO/IO exam and an update on new research and information on oral and oropharyngeal cancer. I am hopeful that one day the visual and tactile EO/IO exam will be standardized across our industry, just as CPR is standardized and recognized.
I am hopeful that one day replacing teeth after cancer will no longer be considered esthetic. I am hopeful that one day oral and oropharyngeal cancer will be history, along with every other cancer.
I am hopeful because the American Dental Association’s (ADA) official policy now includes oral and oropharyngeal cancers and recommends screenings for all patients.6 Since 2018, the ADA has also supported the HPV vaccine. The Centers for Disease Control and Prevention estimates that 70% of US oropharyngeal cancers are associated with HPV.6
“Just as your medical providers adjust their exams, screenings, and assessments based on new information and research, we do the same in dentistry.”
Introducing the exam to patients
The ADA’s updated policy means that all patients should be offered an exam. If you need to make a change and are wondering what to say to your patients, you can use this phrase that my very wise dad, who was a veterinarian, shared with me. Simply state, “What we know now is …”
An example conversation might include the following: “What we know now is this cancer has changed. Tobacco and alcohol are no longer the only risk factors. There are new causes, such as the human papillomavirus, specifically HPV-16, the most common sexually transmitted virus in the United States. Because I want to provide you with optimal care, you will notice a difference in how the exam is performed. There will also be additional questions on your health history questionnaire and verbal inquiries from me as I perform the exam. Just as your medical providers adjust their exams, screenings, and assessments based on new information and research, we do the same in dentistry.”
Time for a lifesaving code
As dental hygienists, CDT codes are extremely important for documenting what we do, and can even determine the amount of support a hygienist has from a practice for performing a certain procedure. What procedure code provides an important metric for the EO/IO exam? Currently the oral cancer exam is part of the D0150 comprehensive evaluation and the D0120 periodic evaluation codes. Wording for these evaluation descriptors says “ . . . includes an oral cancer evaluation where indicated.”
Where indicated seems inappropriate as well as inaccurate. This language implies that this lifesaving exam can be skipped with some patients. Our patients trust their oral health and their lives to us—for which of them is this exam not “indicated”?
I have wondered why there is not a separate procedure code for this exam when there is a separate procedure code for an adjunctive screening device. How do we determine when to use this device? What type of risk assessment is needed when, in fact, all patients are at risk?
It is time for this exam to have a separate procedure code. When you want to make a change, you join a tribe of movers and shakers who are doing just that. So I joined Patti DiGangi’s Beyond Oral Health DentalCodeology Consortium (DCC) group. We decided, as a group, to submit a CDT Code Action Request form to the Code Maintenance Committee (CMC) for a separate procedure code for the oral and oropharyngeal cancer exam, along with other procedure code submissions. Our DCC group of 250-plus hygienists and other supportive professionals spent several months meeting, researching, writing, and rewriting. The final draft of a CDT Code Action Request form was submitted to the CMC in late 2019. In March 2020, the CMC (which does not currently have a voting hygiene member) will meet to discuss and decide on new procedure code submissions and changes.
By the time this article is published, we will know if we will have an oral and oropharyngeal cancer exam procedure code and the specifics of that code. It is my hope, and the hope of the other dedicated hygienists who worked diligently on this procedure code submission, that this will become a reality. All our patients need to have this lifesaving exam, and we need to have this important metric to measure our success.
Editor's note: View Susan Cotten's companion screening protocol reference to this article here.
- “Be part of the change” campaign. Oral Cancer Foundation. August 2016. https://oralcancerfoundation.org/ocf-rdh-part-change-campaign/
- Oral cancer facts. Oral Cancer Foundation. https://oralcancerfoundation.org/facts/
- Gupta A, Sonis S, Uppaluri R, Bergmark RW, Villa A. Disparities in oral cancer screening among dental professionals: NHANES 2011-2016. Am J Prev Med. 2019;57(4):447-457. doi:10.1016/j.amepre.2019.04.026
- Jacobson JJ, Epstein JB, Eichmiller FC, et al. The cost burden of oral, oral pharyngeal, and salivary gland cancers in three groups: commercial insurance, Medicare, and Medicaid. Head Neck Oncol. 2012;4:15. doi:10.1186/1758-3284-4-15
- Misono S, Weiss NS, Fann JR, Redman M, Yueh B. Incidence of suicide in persons with cancer. J Clin Oncol. 2008;26(29):4731-4738. doi:10.1200/JCO.2007.13.8941
- Versaci MB. ADA expands policy on oral cancer detection to include oropharyngeal cancer. American Dental Association. October 1, 2019. https://www.ada.org/en/publications/ada-news/2019-archive/september/ada-expands-policy-on-oral-cancer-detection-to-include-oropharyngeal-cancer
Susan Cotten, BS, RDH, OMT, is a passionate speaker, consultant, and subject-matter expert on HPV and the head and neck oral/oropharyngeal cancer exam. She is owner of Oral Cancer Consulting. She developed the “Cotten Method,” a comprehensive office system specific to oral cancer, assisting dental providers in early detection while reducing risk for liability. She is a 2018 recipient of the Sunstar/RDH Award of Distinction and Colorado Dental Hygienists’ Association Outstanding Contribution award.