Oral Cancer Advocacy from a Survivor

Linda Edgar, DDS


In October 2015, I found myself as one of the 132 individuals diagnosed daily in the United States with lip or oral cancer.

If my diagnosis alarms you, my occupation will send you into disbelief. I am a dentist.                                                                                          

It was already an extremely stressful time in my life. I was operating my dental practice, serving as past president of the Academy of General Dentistry (AGD), and traveling every two weeks from Seattle to Virginia to coordinate care and take care of my aging mother. My life had become a 24/7 work cycle. Then I noticed what looked like a fever blister on my lower lip.

Like most people trying to heal a fever blister, I tried over-the-counter medication. When those ointments didn’t work, a dermatologist examined me and prescribed a cream. The blister ulcerated, crusted, and fell off several times but never fully healed. 

My husband, also a dentist, examined the blister under the microscope and recommended a biopsy. A week later, the pathology report showed that I had squamous cell carcinoma of the lower lip, and my life has never been the same.

The Treatment Plan

The entire process from diagnosis to working with a head and neck surgeon to determining that Mohs surgery would be the most precise treatment was overwhelming.

Mohs surgery is a technique developed by Dr. Frederic Mohs in the 1930s that allows surgeons to precisely remove visible cancer cells and a very small margin of healthy skin and tissue all at once. The procedure is most effective in curing and reducing the chances of followup surgery or additional treatments.

During this entire process, I just remember wondering how much of my face would be removed. Some people I have met have lost half their jaw.

I buried my mother at Arlington Cemetery in February 2016. By March, the Mohs surgery was done, and the cancer cells were removed with two cuts and the removal of most of my lower lip. The vermillion border was able to be saved.

I underwent a two-hour reconstruction surgery, 42 stitches, and 10 long days of bandages across my entire bottom lip. I wore a mask to do dentistry. I was on my way to recovering from oral cancer, but the road ahead was a long one, and side effects remain.

It has been two years, and my lower lip is still numb. It was painful to brush my teeth for about six months. It still hurts to touch the area and apply lipstick. The area is also very sensitive to spices and sugar. I am constantly aware of the tingling in my lower lip. 

Difficulties in Diagnosis

Diagnosing oral cancer can be very complicated. Like several other medical conditions, it can be masked as something less serious like a cold sore or blister. According to some clinicians, oral cancer is difficult to diagnose due to its low prevalence, although about 51,550 people are expected to be diagnosed this year.

Fewer individuals are being screened, and fewer medical professionals are screening for oral cancer. Patients need to be taught what to look for and how to recognize its signs and symptoms.

So, why did this happen to me? And should I have been able to recognize the symptoms?

I think the answer is a simple no. My cancer probably occurred because I was a serious competitive runner and triathlete in the 1980s, often running 120 miles a week and biking several 100-mile rides out in the sun. I have never smoked, I rarely drink alcohol, and I have been with my husband for nearly 45 years. I have never had Botox or anything injected into my lips or face.

As a general dentist, I am the first line of defense in recognizing abnormal screenings. I am encouraging general dentists all over the world to make oral cancer screenings a mandatory procedure for patient visits. I also am challenging individuals to keep regular dental appointments. A dental visit can be as comprehensive as a visit to a medical provider.

Patients and dentists should recognize abnormal sores or lesions in and around the mouth. More dentists should refer patients for biopsies and not just watch abnormalities. According to the Oral Cancer Foundation, patients have an 80% to 90% survival rate if the cancer is detected early. More than 50% of people diagnosed with oral cancer die. 

As the president of the AGD Foundation, I support its mission of promoting oral cancer awareness and education, including our Oral Cancer Awareness Month, and providing screenings. Although this mission has become much more personal for me, there are thousands of lives that can be saved if we promote awareness of lesser-known causes of this silent killer like sun exposure, alcohol, and HPV. We have also partnered with the American Cancer Society to encourage parents to vaccinate their children when they are 11 or 12 years old to protect them against HPV-related cancers in the future.

It is up to all of us to educate our patients and help save their lives. 

Dr. Edgar practices general dentistry alongside her husband Dr. Bryan Edgar in Seattle, Wash. She received her doctorate of dental surgery from the University of Washington Dental School and received a Mastership from the Academy of General Dentistry, where she is a member. She is currently president of the Academy of General Dentistry Foundation and is a past president of the Academy of General Dentistry.

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