Holt Allums didn’t lose her taste buds during cancer treatment, but she did lose her salivary glands. Ulcers climbed up her throat, coating the top and sides of her tongue. Anything she tried to consume she would throw up. The oozing sores in her mouth either made her choke or cough, and she had to carry around a cup to spit in. She still had her taste buds, but food didn’t taste the same. Even if it did, she couldn’t produce the saliva needed to chew and swallow, anyway. “My kids used to put a Hershey’s Kiss in my mouth, and it wouldn’t melt because I had no saliva to break it down,” says Holt Allums. “Plus, it tasted nasty anyhow. Sweets didn’t taste good to me anymore.”
An Unexpected Diagnosis: Oropharyngeal Cancer
At age 43, Holt Allums was diagnosed with oropharyngeal cancer, a type of cancer that affects the tonsils, base of the tongue, and soft palate. Different from oral cancer, which is found in the front of the mouth and is primarily caused by tobacco and heavy alcohol use, around 70 percent of oropharyngeal cancers may be caused by the human papillomavirus (HPV) — the most common sexually transmitted infection in the world. Brian Schmidt, DDS, MD, the director of the New York University Oral Cancer Center and NYU Bluestone Center for Clinical Research, says that head and neck cancers are among the fastest growing cancers in the United States, and are projected to keep increasing until 2030. Last year, there were more than 51,500 new cases of cancers related to the oral cavity and pharynx, a 12 percent increase since 2015, according to the American Cancer Society. “That’s all driven by HPV and oropharyngeal cancer,” Dr. Schmidt says. “And the treatment for oral cancer can be horrific.” The rates of HPV-related throat cancers are more than double in men compared to women — experts can’t quite pinpoint why this is, but it could have to do with men’s sexual practices, their ability to fight off infection, or engagement in activities, like smoking or drinking, that could lead to cancer.
HPV Vaccine Is Shown to Prevent Oropharyngeal and Other Cancers
When Holt Allums was diagnosed in 2009, she had never heard of oropharyngeal cancer. This was three years after the first HPV vaccine was introduced, which Holt Allums wouldn’t have been eligible for at the time, and even if she were, there was no way to know if the vaccine would have prevented her cancer. This was also a time when there was a lot of skepticism around vaccines in general, something that persists to this day, despite the wealth of scientific research supporting the HPV vaccine as the No. 1 preventative for many cancers. The HPV vaccine protects against nine strains of the virus and has been found to be effective against cervical cancer, genital warts, and HPV-related oropharyngeal cancer. In a study published in January 2018 in the Journal of Clinical Oncology, the prevalence of HPV-related oral infections was 88 percent lower in those who reported to have had at least one dose of the HPV vaccine. Holt Allums underwent surgery to remove the lump, as well as chemotherapy and radiation to destroy any residual cancer. And as Schmidt mentioned, the side effects were horrible. Along with ulcers, Holt Allums developed oral thrush, a fungal infection that filled her mouth with white lesions. She could hardly drink water, let alone eat, and relied on a feeding tube for nutrients. During her treatment, Holt Allums says she dropped from 160 pounds to 99. “I wanted to die,” she says. “The radiation supposedly killed the cancer, which I’m not worried about at all anymore, but it completely fried me.”
Treatments Evolving, but Diagnosis Often Delayed
One of Holt Allums’s doctors was Cherie-Ann Nathan, MD, the director of head and neck surgical oncology and cancer research at the Feist-Weiller Cancer Center in Shreveport, Louisiana. She says not all cancer patients will suffer the severe side effects Holt Allums did, but because oropharyngeal cancer is notoriously difficult to detect, many patients don’t get a diagnosis until they’ve already advanced to stage 3 or 4 cancer, which can then usually only be treated by surgery and a combination of chemotherapy and radiation. “The other reason it’s a harder diagnosis is because it only occurs in areas that aren’t as easy to examine,” Nathan says. “Very often the tumors are smaller in size and hidden within muscles in the base of tongue or deep in the tonsils.” Adding to diagnosis difficulties, Nathan says unlike cervical cancer, there are no premalignant lesions, or abnormal tissues, to screen for in oropharyngeal cancer. Historically, as was the case for Holt Allums, treatment for oropharyngeal cancer was invasive, and the intense doses of radiation posed serious risks to patients. Nowadays, doctors have successfully treated patients using transoral robotic surgery, a less invasive procedure that uses robotic arms to access tumors through the mouth and cut them out. In 2018, researchers from the UNC Lineberger Comprehensive Cancer Center in Chapel Hill, North Carolina, shared their findings on a new blood test, or liquid biopsy, able to detect minute traces of DNA from the HPV virus that could help predict early signs of a relapse for patients in remission.
How Dentists Can Play a Part in Prevention
Alessandro Villa, DDS, assistant professor of oral medicine at the Harvard School of Dental Medicine and associate surgeon at Brigham and Women’s Hospital and Dana-Farber Cancer Institute, focuses on prevention and early diagnosis of oral cancer. Dr. Villa helped develop a special toolkit to educate dentists about HPV and oropharyngeal cancers, and says oral health professionals could play a key role in identifying the first signs of oral cancer. In a study published March 2019 in the Journal of Cancer Education, Villa and his research team found that after educating dentists on oropharyngeal cancer and preventative measures like the HPV vaccine, they in turn were more comfortable talking to their patients about it. “Dentists really are in a unique position and have the potential to do an amazing job in promoting HPV awareness among their patients,” Villa says. “It’s important they have increased HPV-related knowledge and know-how to communicate with their patients about HPV-related cancer and preventative strategies.”
Advice From a Patient: Get Your Children Vaccinated
Still suffering the side effects of her treatment nine years ago, Holt Allums can no longer maintain a full-time job, but substitute teaches at a local school. She is open with students, sharing her cancer journey, and even showing them how her feeding tube works. For parents, her biggest piece of advice is to get their children vaccinated. Previously, the HPV vaccine was believed to be effective only if received before a person’s first sexual contact. But in October 2018, the U.S. Food and Drug Administration expanded the indication for Gardasil 9, making it available to men and women between the ages of 27 and 45. The vaccine can’t protect against a strain of HPV with which a person is already infected, but it can protect against strains a person hasn’t been exposed to yet. “A lot of parents have a real stigma about the vaccine,” Holt Allums says. “But do you want your child to end up like me?”
