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by Paul Bergman, DDS
The ultimate question about oral cancer is, "Why me?" But when I think about it, I have to say, "Why not me?" At 61 years old, I"m surprised something didn"t happen sooner!
Currently, I"m in week seven of an eight-week regime of radiation and chemotherapy combined treatment, but let"s go back and see what got me here in the first place.
I have always thought that if I got cancer, it would most likely be lung cancer. I grew up on a small farm surrounded by crops that were sprayed and dusted for insects and/or weeds. My family applied chemicals, sprays, and dusts to fruit trees and strawberries — all without protection. We used solvents, gasoline, oil, paint, etc., without any thought of protection. That"s the way it's been most of my life.
The lichen planus I developed on my mucous membranes was first noticed in the early 1980s when I became sensitive to toothpaste and mouthwash. My dentist noticed a mild inflammation on the left border of my tongue in 1991 that stayed the same over the next few years.
In 1996, I began working on a friend's race car. After five years of working with methanol, brake cleaners, spray paints, and particulates, the tissues changed. During this time, I was also building a 30-foot sailboat, so the exposure levels from that were additive. However, since some of the fumes seemed to bother me more than others, I began to wear an organic-level respirator or enclosed fresh-air mask for certain volatile products that recommended protection.
In August 2000, I developed a fast-growing leukoplakia on the left lateral border and underside of my tongue. This lesion ulcerated and became painful very quickly. One week after examination, an ENT specialist in our area removed it. The pathology report was benign, but there was severe dysplasia. The surgical site healed, and 90 percent of the excised area grew back to form.
I quit crewing on race cars after July 2001, and the boat was finished in early 2002. In 2003, the lesion returned to the border area of the previous lesion. This lesion was red in color and not painful. I was referred to the University of Washington Hospital's Department of Otolaryngology Oncology. The lesion was removed and the pathologist reported benign moderate dysplasia. The lesion was much smaller, and the area healed quickly.
One year later the lesion was back, but on the left dorsal surface of the tongue. It was deemed nonthreatening and looked and acted like geographic tongue (glossitis areata exfoliativa). This was treated with topical steroids and nystatin rinse — the recommended therapy for these types of lesions. It healed and disappeared, except for a minor hyperkerototic patch which I could not see, but was able to feel.
This patch stayed the same except when I ate highly acidic foods, spices, or used any alcohol (Peridex, mouthwash, wine, beer, etc.). It burned for a short time with all of these and would reappear as a red spot after a few days, only to return to pink with short-term topical agents. This was the pattern for the next two years.
In January 2007, the patch was back and responded rather slowly to the topical agents and remained sensitive. During our vacation at Whistler in February 2007, it became enlarged, painful, and ulcerated within several days. I called the University hospital and made an appointment for the most immediate time available to see my surgeon, Dr. Ernest Weymuller, department chair and chief of surgery for otolaryngology; he was on an African safari trip and wouldn"t be available until March 16.
My appointment couldn't have been sooner, but I wished it were due to the pain I was experiencing. Immediately, punch biopsies were done and came back benign, but I was scheduled for surgery two weeks later. The surgery was done just before our previously planned two-week vacation to Mexico beginning the last days of March. I thought it would be great to heal in a very nice vacation spot.
However, the entire lesion was not removed, just the part deemed most dangerous. Four days into the vacation the pain returned, so I called the clinic in Seattle. Dr. Weymuller called two days later with the pathology report — invasive squamous cell carcinoma. We made immediate plans for the entire excision as soon as I returned. The remainder of the lesion was removed with very defined, clean margins. I was considered a very safe surgery because of this. No radiation or chemotherapy was deemed needed.
My first follow-up involved a CT dye scan in early June. My tongue had healed, but had not repaired the contours due to a larger portion that was removed. A small lymph node was palpable next to the left submandibular salivary gland, but due to the recent surgery/healing was not deemed threatening; it would be followed. The CT dye scan was negative.
My next recall wasn"t until early September and another CT dye scan was done. Again, it was negative, but the lymph node remained about the size of a small grape.
I was placed on a two-week regimen of antibiotics to "knock it down," since I had had an extended upper respiratory infection in July. I was rescheduled for a one-month follow-up on Oct. 3, and this time a CT/PET scan.
I went to an Oral Cancer Symposium in September that was one of the best I have ever attended, but the statistics for oral cancer were devastating, to say the least. I felt like a walking time bomb. I got up the nerve to give a brief report of my plight and said I was hoping to become a cancer survivor, a very humbled one.
The Positron Emission Tomography scan, basically a circular collector for radioactive sugar isotopes, was positive for a lesion in my neck and one very brightly glowing lymph node. This scan looks like a starry sky, but when combined with the CT scan is positioned in 3-D. The extremely active cancer cells absorb the sugar and show up as glowing dots or cloudy areas in the combined scan.
I was scheduled for surgery. A malignant lymph node and small-area thin mass were removed with no lower lymph nodes being positive. I was scheduled two weeks later for a radiation exam at our local cancer center. My exam there revealed a new lymph node in the right lower mandibular area that had not been there during the PET scan.
I was sent back to the University for surgery of that node on Nov. 15. In postop, an undetected bleeder filled my neck with blood, bruising my trachea, and required a temporary tracheotomy to prevent airway obstruction from inflammation. This node was also malignant, but with no further involvement beyond that node.
A new PET scan was negative, and I began chemotherapy and radiation simultaneously in mid-December due to the metastatic nature of the cancer. During the fourth week, when I.V. chemotherapy was done every day and a 96-hour medication pump was used, I began to feel real fatigue. By Friday afternoon, I was tired, my throat hurt, and the skin on my neck was "sunburned," but I thought I had made it through without exceptional symptoms. Two hours later, my throat began to burn, swell, and excrete thick phlegm. The dry nausea came on, and the pain became excruciating.
The next day, my tongue was dark gray and all the tissue in the submandibular area and tongue began to slough, leaving a raw, bleeding oral cavity, oro- and nasopharynx, and tongue. I couldn"t eat, could barely drink fluids, and was more miserable than I could imagine. By Monday I needed I.V. fluids so I reported to the cancer care center. I was given fluids again on Tuesday and felt better by Wednesday morning. I went to my office for three hours and did some dental care to cheer me up.
Early Thursday morning my heart went in A-fib, and I headed for the emergency room and ICU. Eighteen hours later, I was converted back to normal heart rhythm after massive I.V. electrolytes and was released after three days.
I was given a month's "vacation" from cancer treatment to allow my oral tissues and surface skin to heal before resuming radiation and chemotherapy.
Because of chemotherapy, the tissues regenerate at one-third the normal rate, so recovery was slow. Water became something I could drink only with moderate pain after two weeks of healing. All foods and liquids had to be warm to temper the "cold shock" that burned tissue likes to remind you is there. Food was extremely limited due to many of the additives, flavorings, preservatives, or spices which were very irritating. Almost all food had to be naturally prepared. Dry mouth and taste were the real shockers that severely limited what could be chewed or tolerated, and everything had to be washed down. I came across some very helpful products to create comfort, healing, and eating assistance.
After completing my remaining treatments, I will have an excellent prognosis. I continue to work three to four hours each day to keep my spirits as high as possible. My practice has been well supported by my associate, Dr. Alice Dellisanti, and a really great dental team.
My plight will continue with frequent follow-up examinations, but hopefully I can become a permanent cancer survivor.
Cancer is present in almost every dental practice, whether it is the patient, the dental team, or the dental family. If you don"t look for it, it will find you!
Dr. Paul Bergman practices in Burlington, a small town in northwest Washington. He is married and has an adult son. He graduated from the University of Washington School of Dentistry in 1975. Reach Dr. Bergman at [email protected].