BY PATTI DIGANGI, RDH, BS

Even with our best efforts, oral cancer continues to have a nearly 50% mortality rate at five years. This equals 40,000 deaths annually in the United States with 370,000 worldwide. It is predicted that there will be a world-wide oral cancer epidemic by mid-21st century. Predictions are based on what has been and current situations. The wonderful part of predictions is they can be wrong. Two people, Alison Stahl and Eric Statler, are leading the way to circumvent that future death rate. They challenge all of us across the country not to be reactive — but rather to be proactive in our approach.

Volunteers welcome participants to the oral cancer walk.

 

Eric Statler is a stage IV oral cancer survivor. As happens far too often, he was initially misdiagnosed and thought to be experiencing pain related to wisdom teeth. An infection that followed his extractions was treated with antibiotics and he was dismissed. With no resolution and increasing pain, he went back to the dentist who immediately referred him to a specialist.

Someone You Should Know: (from left to right:) Mike Stahl, Kim Benkert, Denise Snarski, Bonnie Chisholm-Green, Trish DeDios, Patti DiGangi, Donna Grzegorek, Alison Stahl, Amy Frazin, Lois Roewade, Ewa Posorski, Tracy Fritz, Zuzana Buc, Cynthia Pfeiffer, and Eric Stadler.

 

At the age of 33, Eric was diagnosed with stage IV HPV related oral cancer. Chemotherapy and radiation treatments followed along with multiple disfiguring surgeries and some facial paralysis. Treatments were initially unsuccessful; cancer was winning the battle. Eric, once the epitome of health, was near death. Due to the extreme pain of his care, his medical team prescribed an addictive medication protocol. This oft told story could have been different.

Alison Stahl, RDH, BS, lives in the Chicago area, the home to the ADA, ADHA, Chicago Dental Soceity, and countless numbers of dentists and specialists. Alison put Illinois on the map when it comes to oral cancer awareness and advocacy. As a passionate dental hygiene professional, Alison says she simply wanted to be more involved and initially to be a volunteer for a cause that supported oral cancer awareness.

When finding no local charitable event for this devastating disease, she decided she would start one herself. It was difficult to know just how large this event would be but the decision to start a charity walk in Illinois could not be delayed any further. People are dying every hour from this disease, yet the public remains very unaware of current risk factors. The Northern Illinois Oral Cancer Awareness (NILOCA) was born. Alison’s vision and thousands of hours of hard work have become a reality giving oral cancer a louder voice.

Alison knew she couldn’t do it alone. She created a committee of people — mostly unknown to each other before this effort — bonded by their passion to bring public awareness to this dreaded disease. Many students, dental, and dental hygiene professionals stepped up as volunteers to make this event possible as well as many generous sponsors.

It took an entire year of planning but the day finally arrived. On June 10, 2012, by 8 a.m., the committee welcomed over 600 registered participants for the event. Families walked in honor of those they had lost. Survivors found comfort and community through this event. Dental professionals were inspired and have vowed to never miss an opportunity to perform that life-saving exam. The walk broke all records for an inaugural event, grossing just over $70,000 as well as breaking all records to date at the Oral Cancer Foundation (www.oralcancerfoundation.org) for attendance and fundraising.

Eric was a guest speaker and helped participants understand that he is a thriving survivor — someone who loves life despite the challenges and struggles that remain after cancer. Four years later, Eric spends much of his time supporting others who are living with this disease and tries to help survivors thrive. Eric has become an expert on the latest options, facilities, and protocols for treatment and understands first-hand the emotional toll oral cancer can have on the person, their caregivers, and loved ones. Eric’s words furthered our resolve to do more to carry out his mission and spread the message about the importance of early detection and prevention.

Alison had no prior event planning experience before taking on this endeavor. She learned so much and developed amazing new friendships along the way. Her journey is only just beginning, and NILOCA is already talking about how we can make the 2013 events even bigger and better. Much more can be done. There is room to double or even triple the remarkable numbers. Ways must be found to create awareness in our communities throughout the year. What if we had more dental hygienists, dental offices, oral surgeons, and ENT’s and other health care providers supporting our cause? We have the opportunity to prevent stories like Eric’s.

Alison’s efforts will save lives; she is someone you should know as well as her entire team. Are you talking about current trends and risk factors like the HPV virus and importance of the vaccine? Can you collaborate with other colleagues in your part of the country and create your own awareness and/or screening events? It can be a walk, a golf outing, a dinner gala, or even a block party. The Oral Cancer Foundation has wonderful people who can guide you through the process. We need you and hope you will join us as we continue to “Spread Awareness — Save Lives!” RDH

Patti DiGangi, RDH, BS, is a vision-driven practicing clinician that brings experience and news-you-can-use the next day. Patti is an American Dental Association Evidence Based Champion and Current Dental Terminology Licensee currently writing a series of min-books on insurance coding for hygienists. She is a certified presenter through the Academy of General Dentistry National Speaker’s Bureau for Periodontal Disease and a member of multiple key opinion leader boards. She is a member of the National Speaker’s Association and a Certified Speaking Professional candidate. Patti is a certified Health Information Technology trainer and a member of the American Health Information Management Association taking an active role in our shaping the changes in our electronic world.

Reference

Thomason P. Oral Precancer: Diagnosis and Management of Potentially Malignant Disorders. (2012) Hoboken, NJ: Wiley-Blackwell.

Suggestions for volunteering to fight oral cancer (sourced from the OCF volunteer files)

Suggestion #1: Start where you are. You don’t need to know everything, and you certainly don’t need to be perfect. Many are novices regarding oral cancer despite being part of our individual struggles with it. You bring unique insights and contacts to the fray that would be less likely without your involvement. That compensates for shortcomings. We all remain capable of learning.

Suggestion #2: Take things step by step. You set the pace of your engagement. Don’t worry about being swallowed up, because you’ll determine how much you get involved. No single person can keep up with it all. We are on a learning curve and that requires patience. Burnout is always a possibility and that is nonproductive in all respects.

Suggestion #3: Build a supportive community. You can accomplish far more with even a small group of good people than you can alone. Volunteers are formed on that principle and it will become even more powerful as they gain experience, clarity —and more members.

Suggestion #4: Be strategic. Ask what you’re trying to accomplish, where you can find allies, and how to best communicate the urgencies you feel. Our vision and mission are dedicated to being both realistic and expansive in what we can do. Creativity and the “six degrees (or less) of separation” will be called into play often. Our intent to continue finding outreach opportunities (e.g., Relay for Life model) and building awareness on a much larger scale which offers each individual a way of sustaining meaningful involvement. We are not all the same in this regard and we don’t have to be. What we must do is continue to find ways of getting the most bang for our involvement buck.

Suggestion #5: Enlist the uninvolved. They have their own fears and doubts, so they won’t participate automatically; you have to work actively to engage them. If you do, there’s no telling what they’ll go on to achieve. This entails opportunistic searches through all of our contacts and associations. What we are now engaged in can make the world a better place for people who would otherwise suffer greatly; most are currently uninvolved because they are unaware.

Suggestion #6: Seek out unlikely allies. The more you widen the circle, the more you’ll have a chance of breaking through the entrenched barriers to change. This should be invigorating as well as productive. Some of this potential lies in communities of interest that may appear far removed from the world of oral cancer. That is not so because they are all populated with people who are at risk — or worse. No cluster of interests should be immune to your message if we can connect with them.

Suggestion #7: Persevere. Change most often takes time. The longer you continue working, the more you’ll accomplish. We seek to contribute to a reversal in the growth of oral cancer by a specific year but will not stress out if it takes longer — as long as we continue to make progress.

Suggestion #8: Savor the journey. Changing the world shouldn’t be grim work. Take time to enjoy nature, good music, good conversation, and whatever else lifts your soul. Savor the company of good people working with you for a change. We have a lot of other people in our lives to help this happen. Sustained effort without relief will destroy us, not oral cancer. Our particular world is rich in recharging opportunities. No one is in the way of our taking a break when we need it.

Suggestion #9: Think large. Don’t be afraid to tackle the deepest-rooted injustices, and to tackle them on a national or global scale. Remember that many small actions can shift the course of history. This one is pivotal. It means that we can connect with and engage people who wield great influence, bringing their formidable presence to the task. Simply put, there is no one with whom it is automatically beyond our ability to connect. This won’t define all of our activity, but it offers the greatest rewards in terms of return on the time invested.

Suggestion #10: Listen to your heart. It’s why you’re involved to begin with. It’s what will keep you going. This one is simple, but like many simple things, not easy. Remember why we are doing this: to honor the memory and the gift of others Our hearts are already involved; we just need to remind our bodies of it occasionally.

This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.