Author: Shelli Castor
Dental hygienist and practice-management consultant Barbara Boland discovered at the young age of 41 that she had oral cancer. Boland is now a 10-year cancer survivor, and she hopes her story and experiences will serve to start a continuing dialogue about oral cancer, especially among dental professionals.
Boland graduated from Temple University in Pennsylvania in 1982 and has been working as a practice-management consultant for 24 years. In December 2002, she discovered a peculiar white spot on her tongue that she knew she hadn’t noticed before. She kept an eye on the spot for a month, and because it was changing, she showed her tongue to a head and neck surgeon. The surgeon responded that it couldn’t be cancer for various reasons: she didn’t smoke or drink, she was female, and she was “too young” — there was no way the spot could be cancer.
While such an almost flippant response to a patient’s concerns seems wildly out of place and unexpected today, Boland notes that 10 years ago, dental and medical professionals were not well-educated on the signs, symptoms, and risk factors of oral cancer. For dental and medical professionals 10 years ago, the most common risk factors included tobacco and alcohol use, age, and the fact that males had a higher incidence of oral cancer than females. Boland fit none of those categories, and so her concerns were not seen as pressing.
Still, the spot on her tongue “didn’t feel right” to her. By this time, not only had the white spot grown, but a red spot had appeared as well. In April 2003, she again went to the head and neck surgeon, but received the same response.
Through her consultant practice, Boland worked with about 30 dentists. After the head and neck surgeon’s second dismissal, she began to go around to her clients and asked them to take a look at the spots. The dentists had the same response as the neck surgeon. She didn’t fit the categories, so what chance was there that the spots would be cancer?
Throughout the time Boland was seeking advice, the spots continued to grow.
Finally, a breakthrough presented itself: One of her clients had information on a new procedure called a brush biopsy that wasn’t even on the market yet. The client offered to try out the product on her, and she had a biopsy performed on the white spot only, as she hadn’t shown the client the red spot. The white spot biopsy came back atypical, which meant she needed to have a scalpel biopsy. That biopsy came back on May 16, 2003, and the result confirmed Boland’s growing fears that something was very wrong: oral cancer.
On July 1, 2003, Boland underwent surgery to remove 25% of her tongue. She also had lymph nodes removed from her neck to see if they contained cancer. Since the lymph nodes came back cancer-free, she did not have to undergo radiation or chemotherapy.
For the next few months, Boland gradually regained full functionality in her mouth. It took eight months for her speech to return to normal. Ten years later, the only lasting effects are a significant lack of taste buds and sensation on the affected right side of her tongue, and the fact that the right side of her face continues to be numb. However, she says, she can live with that; those are small side effects compared to the gravity of cancer.
In the 10 years since Boland’s diagnosis and treatment, new discoveries about the causes of oral cancer have been made. HPV — the human papillomavirus — is rapidly becoming one of the most common causes of oral cancer. The HPV link was not known at the time of Boland’s diagnosis, but is becoming better known as researchers continue to conduct tests on the disease. The HPV link was also briefly featured in the news media when Michael Douglas mentioned he had had treatment for oral cancer linked to HPV. Boland says that it is unlikely that her cancer is HPV-related because of the location of her lesion—most HPV-related oral cancers appear at the back of the mouth, while hers was located under her tongue.
While HPV is now increasingly recognized as a possible cause for oral cancer, the major risk factors are still drinking and smoking. However, age is no longer as much of a concern because of the HPV link; the under-50 population is at growing risk for developing oral cancer. Males are still diagnosed at a greater rate than females, but females are catching up. Still, about 25% of people do not fall within the above major categories, and about 6% of cases have undefined causes. Even so, most oral cancer patients today do find out what caused the cancer—most cancer patients’ tumors get tested for HPV.
Boland’s story offers a chance for the general public as well as dental and medical professionals to become more knowledgeable about oral cancer. It is important to remember that, while oral cancer is more common than cervical cancer and about as common as leukemia, 95% of oral changes aren’t cancerous. However, Boland informs, you can’t tell with your naked eye whether an oral change is cancerous or not.
Since Boland’s diagnosis and treatment, she has been speaking to dental professionals on the topic of oral cancer. She laments, however, that there doesn’t seem to have been a changed response to early signs of oral cancer — most professionals respond the way the surgeon and her dentist clients did years ago. Boland attributes the lack of knowledge and seeming indifference to the topic of oral cancer to how dental professionals are taught about it in school. She said that dental schools feature photographs of large lesions and teach future dental professionals to search for those large lesions when discussing oral cancer. Boland says that this type of training is why the five-year survival rate for oral cancer is so low — by the time oral cancer is detected, the cancer is at an advanced stage, which reduces the survival rate. Instead, dental professionals should be taught to pay attention to things that probably are benign, but shouldn’t be there, such as tissue changes. Small spots like Boland’s should also be paid attention to — the earlier the detection, the greater chance of survival rate.
In addition to changed curriculum in dental schools, Boland advocates that states should mandate a continuing education course every couple of years on the detection of oral cancer. The combination of better information on oral cancer with a frequent refresher on that information would, in Boland’s words, keep the dental professional from “getting complacent” about oral cancer.
Since she has been both a patient and a dental hygienist, Boland has advice for both dental professionals and patients about how to promote awareness and/or be aware about oral cancer.
She says dental hygienists and dentists should talk to their patients about oral cancer at every checkup. New tools, such as the brush biopsy that first indicated the presence of Boland’s cancer, should be incorporated into the dental armamentarium. Since younger people are now more likely to develop oral cancer because of the HPV link, Boland advocates starting regular oral conversations and oral cancer screenings with patients at age 12. The CDC, she notes, has fact sheets about HPV that could be given to patients. As far as how often screenings should be given, every checkup would be ideal, but screenings should be given at least annually. She says she wants patients to get in the habit of scheduling an oral cancer screening every year, just as women of a certain age schedule their mammograms every year.
For professionals and patients worried about the extra cost of a screening, Boland states that cancer screening should be considered a part of a comprehensive exam, and that patients not be charged an extra fee for that procedure. If the patient needs or requests a procedure such as a brush biopsy, for example, that could be considered a separate exam, and that dentists could charge for it if they absolutely had to. Boland does admit that there is some cost for the screenings and procedures, but that they are not much. For her, dental professionals should have the goal to screen as many people as possible. Dental professionals “have the professional responsibility to get the word [about oral cancer] out there to people,” Boland says, and that “public awareness needs to be increased.”
When asked, Boland said that people could do a “self-exam” for oral cancer. She said people can check for unusual things. If a person does see something new (not something that’s been there for a long time) or a change, Boland says to keep an eye on it for a couple of weeks; most trauma (such as cheek or tongue bites or burns) will heal within that time frame. If two weeks go by and the unusual thing is still there and/or has gotten bigger, Boland advises people to have it checked out. She says not to let someone check you with his or her naked eye. As for how often a person should check their mouth for possible signs of oral cancer, Boland says to check monthly or every three months; if you notice something, then check every day.
Barbara Boland has taken her admittedly scary experience with oral cancer and turned it into an opportunity to educate others, especially dental professionals, on the new information surrounding oral cancer. Her persistence in trying to find an answer to the curious lesions on her tongue, even after countless dismissals, paid off, and saved her life. Boland herself says that if she wasn’t a hygienist, she wouldn’t have been diagnosed with stage 1 cancer — if she had been a regular patient without dental hygiene training, had gone to her dentist, and had received the same dismissal, she wouldn’t have been worried about it, she says. Boland hopes her story will educate others about oral cancer. She also hopes that it will lead to changes in dental education and practice regarding oral cancer so that more people will be diagnosed earlier and therefore have a better chance of survival. Boland’s 10-year survival rate is “the exception, not the rule” — but Boland hopes to change that.