This December will mark the 20th anniversary of the day my life was forever changed by the news that what I thought was an innocent swelling on my neck was in fact stage 4 oral cancer. Upon getting my diagnosis, my immediate impulse was to learn everything I could about this disease, including how I likely contracted it and, more importantly, what was the best way to treat it.
You can imagine my disappointment and dismay to discover what little information was available at the time, not only to the public but also to the dental and medical communities. This revelation motivated me to conceive and eventually found the Oral Cancer Foundation (OCF). I was determined to make needed information more accessible to other oral cancer patients and to do everything in my power to reduce the impact of this deadly and debilitating disease in the future.
As I contemplate this imminent anniversary, I think it might be appropriate to take stock of the progress our foundation and the dental and medical communities have made in the last 20 years. We have made much progress, but we have only scratched the surface of what we can and must do.
Increasing Incidence
As of the late 1990s, the annual incidence rate for oral and oropharyngeal cancer had held steady for many decades at about 30,000 Americans. Today, the number is almost 50,000.
Specifically, OCF estimates that 49,750 Americans will be newly diagnosed with oral or oropharyngeal cancer in 2017, which is higher than the number for 2016. About 9,750 individuals, or one person per hour per day, will die from this cancer in 2017, which is also an increase compared to last year.
Does this mean that our efforts have had no impact? No. As you will see, the degree of difficulty for reducing oral cancer incidence has clearly increased during the past few decades.
An Evolving Demographic
You may be asking yourself how oral cancer’s incidence can possibly have increased given the significant reduction in tobacco usage during the past several decades. After all, for decades tobacco has been known to be the leading cause of oral cancers. But if you are not asking yourself this question, it is probably because you also know that we have discovered a new etiology for oral/oropharyngeal cancer within the past 15 or so years: human papillomavirus (HPV) version 16.
Thanks in large part to the pioneering and prolific research of Maura Gillison, MD, much of which OCF has been proud to help fund, we now know that this sexually transmitted virus, known for years to be the primary cause of cervical cancer, is now also a leading cause of oropharyngeal cancer.
Historically, the dental and medical communities have considered the high-risk demographic for oral cancer to be as follows: older than 50 years old; predominantly male; twice as likely to be African American as white; tobacco users; and heavy alcohol users. And while that group remains high-risk, the fastest growing segment of the oral/oropharyngeal cancer population are males between 40 and 55 years old who are nonsmokers.
Too Late Too Often
If there is one fact about oral cancer that is more damning than others, it is this: approximately 70% of oral cancer is discovered as late-stage 3 and 4 of this disease. These late stages are accompanied by dismal survival rates, which are the reason the 5-year survival rate for all stages of oral cancer is only about 57%. This is one of the lowest survival rates of all types of cancers.
In addition to the low survival rate, patients with oral cancers discovered in late stages also experience significant morbidity and permanent quality-of-life issues, which could include severe facial disfigurement, the loss of the ability to swallow and eat normally, and an inability to speak.
Late-stage diagnosis oral cancer is not occurring because most of these cancers are hard to discover, although HPV-caused oral cancers have unique discovery issues. It is occurring because of a lack of public awareness coupled with the lack of a national program for opportunistic screenings that would yield early discovery by medical and dental professionals.
The good news is that when oral cancer is found at early stages of development, the 5-year survival rate leaps to an average of 80% to 90%. Our challenge, clearly, is to ensure that oral cancer is detected in its earlier stages.
Proof Positive
In those cancers where we have made the greatest progress in reducing mortality rates, the cause of the progress is the same: a meaningful increase in public awareness and early detection. Colon, prostate, cervical, skin, and breast cancers all have experienced significantly reduced mortality rates following concerted efforts to make the public aware of the risk of the disease and the need to pursue early detection. There is no reason to believe that the outcome would be any less successful for oral cancer.
There is no need to reinvent the wheel. We know what needs to be done, and it is far from an insurmountable task.
So where do we go from here? As the oral cancer incidence numbers I shared with you earlier attest, reducing the impact of this disease remains a formidable challenge. But as the history of other oral cancers also attests, there is a proven formula at our disposal.
First, we need to get more health professionals to screen their patients for oral cancer annually and their high-risk patients semi-annually. For dental practices, this means at minimum a visual and tactile exam, using visual inspection and palpation to identify any abnormal tissue. This may be supplemented by one of several adjunctive screening devices that are now available. Please note that this screening is about detection, not diagnosis. Surgical biopsy remains the only definitive means of determining if abnormal tissue is in fact cancerous or pre-cancerous tissue.
Second, we need to increase the public’s awareness of not only the threat posed by oral cancer, but the need for people to regularly check themselves for any abnormal lesions or swellings on their neck or face. At OCF, we have significantly increased our focus on initiatives educating consumers about the need to “Check your mouth.” Dentists and hygienists can also play a crucial role in educating and encouraging their patients to be on the lookout for potential signs of oral cancer.
While the challenge we face is significant, it is far from insurmountable. After all, we are not trying to find a cure for oral cancer. We are simply trying to detect it earlier. As other health professionals fighting other types of cancer have proven, following these simple steps can have a profound impact on our ability to achieve that goal.
Mr. Hill is the founder and executive director of the Oral Cancer Foundation. A former successful entrepreneur and executive in the pharmaceutical and medical device industries, he is a stage 4 oral cancer survivor. He can be reached at bhill@oralcancerfoundation.org.
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