Oral cancer: a personal journey
By Barbara Boland, RDH, MBA
Do you know that ...
... one American dies every hour of every day from oral cancer?
... and that 25 percent of all oral cancer patients have none of the traditional risk factors we were all taught about in school?
... and that the fastest growing group of oral cancer patients is nonsmokers, under the age of 40, with females outnumbering males?
... and that there is a proven link between oral cancer and human papilloma virus (HPV)?
I didn’t know any of these facts either. Oral cancer was not on my radar screen at all until, on May 23, 2003, at the age of 41, I was diagnosed with stage I, poorly differentiated, squamous cell carcinoma of the tongue. This was never a subject I thought I would develop an expertise in, but my journey through diagnosis and treatment convinced me to use my experience as an oral cancer survivor to raise awareness. There is an absolute necessity for the profession of dentistry to embrace the concept of early detection of oral cancer.
My story began in December of 2002 when, while flossing, I noticed a very small, maybe 2 mm by 2 mm, round, soft, white lesion on the posterior ventral surface of my tongue. I kept my eye on it for about three weeks, and when it didn’t go away, I showed my tongue to a head and neck surgeon who told me it was “nothing.” When it didn’t go away by April 2003, and the area of leukoplakia had actually gotten larger, the head and neck surgeon took another look and again declared it “nothing.” He said there was no way I could have cancer because I had never smoked, was a social drinker, and it was soft and round – something cancer never is.
I am a licensed dental hygienist and, at the time, I was working as a practice-management consultant. In May, when I arrived at the office of clients Dr. Patrice Ohman and Dr. Hank Wright, I noticed an atlas of oral lesions from CDx Labs, the distributor of brush biopsy kits. I pointed to a picture and told them I had something that looked just like that on my tongue. A brush biopsy was performed that day and about four days later, Dr. Ohman called to tell me that the results had come back as “atypical.” The report contained a description of the atypia, including increased nuclear to cytoplasmic ratio, loss of polarity, and increased nuclear staining.
The next step was a scalpel biopsy, which was scheduled in the office of an oral surgeon. I was nervous and I made sure he knew I was a hygienist, thinking it might help with the communication. After I corrected him and explained that I was not, in fact, there to have a tooth extracted, but rather to have a biopsy, he examined my tongue. He was unimpressed with what he saw until I pointed out to him a second lesion that had cropped up over the previous couple of weeks. I had noticed a small erythroplakia that would come and go. Some days I could see it, some days I couldn’t.
Occasionally I would get a shooting pain from that area of my tongue all the way back into my ear. He performed an excisional biopsy of the erythroplakia and an incisional biopsy of the leukoplakia. I left the office with six sutures in my tongue and a promise from the surgeon that he would call with the results early the next week.
The following week, I went back on the road to see my clients, and all of my dentist clients reassured me that I couldn’t have cancer – after all, I didn’t smoke or drink much and I was too young. The week passed and I did not hear from the oral surgeon, so I called his office on Friday morning. I explained to the staff member who answered the phone who I was and that I was waiting for biopsy results. She put me on hold and after several minutes the doctor got on the phone and said, “Yeah, the biopsy came back as cancer. You still have the tumor on your tongue so I want to treat that with the laser. You will have to come to this office because that is the only place I have the laser. Oh, wait. You are only 41? You don’t smoke? You should be treated medically.”
Before delivering the news, he never asked if I was alone. He never suggested that I come in to speak with him. He never even followed up with me. As far as this oral surgeon knows, I may never have had treatment and I could be dead.
I saw four head and neck surgeons for consultations before deciding to be treated at the Hospital of the University of Pennsylvania. I did research and decided that I wanted to have my lymph nodes removed because this is the major way oral cancer spreads to other parts of the body, most commonly the lungs. Even with negative CAT scans and MRIs, there is still a 20 percent chance that there is metastasis to the lymph nodes. The only way to know for sure that the lymph nodes are clear is to remove them and look at them under the microscope. On July 1, 2003, I had a partial glossectomy during which 25 percent of my tongue was removed, and a modified neck dissection during which the first four levels of lymph nodes and my submandibular gland were removed. Thankfully, my lymph nodes and salivary gland were cancer free, so I did not need radiation or chemotherapy.
It took about six weeks for me to be able to eat solid food and about eight months for my speech to be completely normal. Immediately after surgery, the right side of my lower lip was paralyzed and remained that way for about five months. My lip did ultimately come back to life just as my surgeon was ready to declare the paralysis permanent.
After what I had seen in the head and neck tumor clinic at Temple University Hospital while I was a dental hygiene student, and at Thomas Jefferson University Hospital where I worked as a dental hygienist and helped treat oral cancer patients, I would have been thrilled to come out of this with just a paralyzed lip. Thankfully, my smile is normal again. My permanent side effects are that I don’t have taste or sensation on the right side of my tongue and much of the right side of my face and neck are numb. All of that is easy to live with, especially when you consider the alternatives.
Life after oral cancer
So what did I learn from my experience? The first thing I learned is that if I had not been a dental hygienist, I would never have been diagnosed with a stage I cancer. Thankfully, I knew enough not to take the doctor’s word for it when he looked at my tongue with his naked eye and said, “It’s nothing.” I also learned a sobering fact. The mortality rate for oral cancer is 50 percent, and it has not changed in well over 30 years. I realized that, unfortunately, I was not the only dental professional who was out of touch with the realities of this horrible disease and that, at least partly due to our profession’s lack of awareness, 75 percent of oral cancer cases are diagnosed at stage III or stage IV, when the five-year survival rate is less than 20 percent.
It is up to us, the dental profession, to make a difference in the five-year survival rate. Every time you examine a patient, you have the chance to save a life if you remember that you are looking for early oral cancer, subtle tissue changes, and not big tumors. There are new technologies available to help make early detection more likely: specifically chemiluminescence, tissue autofluorescence, and brush biopsies. In my opinion, you are obligated to incorporate these technologies into your practice and to never look at something in a patient’s mouth with your naked eye and say, “It’s nothing.” If that is your approach, you will be wrong about leukoplakias about 25 percent of the time and about erythroplakias 90 percent of the time. Most oral cancer patients do not have the great outcome that I had. It simply is not worth taking the risk of being wrong about an innocent-looking lesion. The worst thing that happens is that you find out something you suspected was nothing, really is nothing. The best thing that happens is that a lesion is removed when it is dysplastic or stage I. The only way to improve survival rates and to have patients avoid debilitating and disfiguring treatment is to increase the rate of early detection. I am committed to doing everything I can to make that happen. Please join me in my fight.
Barbara Boland, RDH, MBA, founder of Boland Consulting, LLC, works with dental practices to help them formulate and implement early oral cancer detection programs utilizing the latest early detection technologies, as well as lectures to groups of dental professionals on early detection. She can be reached at firstname.lastname@example.org.