October 1, 2013 Features

Casualties of Intimacy

As an epidemic of HPV-related oropharyngeal cancer takes hold, SLPs are uniquely positioned to help affected patients navigate the grueling treatments.

When actor Michael Douglas revealed in June that his throat cancer was caused by human papillomavirus, some people were surprised to learn that this virus, most often sexually transmitted, and most commonly associated with cervical cancer in women, also poses such a danger to men.

But for many speech-language pathologists, the link between HPV and head and neck cancer was no surprise.

Casualties of Intimacy

HPV-positive oropharyngeal squamous cell cancers have increased 225 percent between 1988 and 2004, especially in white males, according to a 2011 article led by Anil K. Chaturvedi and published in the Journal of Clinical Oncology. That study linked more than 70 percent of new cases of oral cancers to HPV infection, which now surpasses tobacco use as the leading cause of such cancers. And HPV-positive oropharyngeal disease is on course to double the incidence of every other type of head and neck cancer over the next 20 years, says SLP Jan S. Lewin, professor in the Department of Head and Neck Surgery at the University of Texas M.D. Anderson Cancer Center in Houston.

"HPV-associated head and neck cancers will really dominate the future," says Lewin, who also serves as section chief of speech pathology and audiology at M.D. Anderson. "This is an incredible opportunity that we [SLPs] have to help increase the quality of life for patients who have an improved overall prognosis and a chance to survive much longer."

Indeed, some good news in the face of the dire medical statistics is that people with HPV-associated tumors in the oropharynx tend to respond better to treatment and have a survival advantage over those who are not HPV positive, says Edward Damrose, associate professor of otolaryngology at Stanford School of Medicine in Palo Alto, Calif. The two- to three-year survival rate in patients with HPV-positive squamous cell tumors is 80 to 95 percent, while for HPV-negative cancers it is 57 to 62 percent, according to data published in the New England Journal of Medicine in 2010.

A 2012 study from the Centers for Disease Control and Prevention and published in the Journal of the American Medical Association, found that men have three times the prevalence of oral HPV infection than do women (10.1 percent vs. 3.6 percent). Whereas head and neck cancer caused by heavy tobacco and alcohol use typically has appeared in older patients, the CDC study found oral HPV infections peaked in two much younger age groups: 30- to 34-year-olds (who had a 7.3 percent chance of infection), and 60- to 64-year-olds (who had an 11.4 percent chance of infection).

"These people are going to have years of life after they complete treatment," Damrose says. "If they do have side effects, they'll be alive and likely cancer-free and needing to deal with these side effects. This raises the question of how we treat these folks now and how we plan for the future of this group."

To be sure, the short- and long-term effects of the standard treatments for oropharyngeal squamous cell cancers—surgery, chemotherapy and radiation—can be incredibly difficult. Physicians and SLPs who have treated the growing number of HPV-positive oropharyngeal cancer patients in their practices say that refined medical treatments, in addition to early and aggressive speech and swallowing treatment, are critical to improving outcomes for these cancer survivors.

Debilitating treatment effects

While it is encouraging that cure rates are better for HPV-positive patients, the treatment for head and neck cancer is not an easy one, says Christa P. Likes, an SLP at Greenville Ear, Nose and Throat Associates in Greenville, S.C. The side effects of treatment can harm two very important aspects of quality of life—speaking and swallowing. Radiation, in particular, can cause fibrosis and scarring in neck tissues that may not occur until years later.

"Radiation is the gift that keeps giving and can be cumulative over time," Likes says. The structures for swallowing that lift, move and close may not move as well because of fibrosis and scarring. Radiation also can affect the voice and movement of the vocal cords or vocal folds.

"We see patients who were treated five or 10 years ago with radiation therapy alone, or more commonly in combination with chemotherapy, coming back with debilitating effects," Lewin concurs. "Their necks are woody and hard, like the surface of a desk. In some of the more severe cases, patients come back spitting in a cup because they can't swallow their own saliva."

Research shows that intensive regimens of swallowing exercises that are aggressively implemented during treatment result in maintenance of head-and-neck musculature and improved swallowing indexes. Findings published last year in The Journal of International Radiation Oncology*Biology*Physics about one such exercise regimen, a standardized high-intensity one known as "pharyngocise," show promising long-term outcomes for swallowing function.

Lewin also notes the importance of recent treatment advances that spare uninvolved organs and tissues to preserve long-term function. The use of molecular and biological chemotherapeutic agents that target the genetics of the tumor, and early trials using proton beam radiation therapy, hold promise for avoiding the significant debilitation associated with irreversible swallowing dysfunction.

"We can't continue to use the same treatment regimens that really put muscles and tissues that don't have cancer in them at risk for severe, irreparable deterioration," Lewin says. "Clinicians agree that collateral damage must be avoided."

Lewin describes new important investigative trials by such cooperative research groups as the Radiation Therapy Oncology Group and the Eastern Cooperative Oncology Group to examine contemporary approaches to the treatment of both HPV-positive and -negative tumors in the oropharynx. The trials will evaluate the use of new endoscopic, minimally invasive surgical approaches (such as transoral laser microsurgey and transoral robotic surgery) as an alternative to or in combination with standard or reduced radiation therapy. The goal of both studies is for patients to show progression-free survival while still maintaining functionality. Other studies have shown that the presence of HPV confers a comparable survival advantage in patients treated surgically versus those treated with chemoradiation.

"For the first time ever we are looking at a major change in treating this disease," Lewin says. "But also, it is the first time ever that my specialty will systematically and objectively analyze functional outcomes, particularly swallowing. We will be able to delineate what it is we are saving physiologically, as opposed to simply relying on patient-reported outcomes that are not always reliable indicators of true swallowing function."

SLPs take the lead

Experts agree that a proactive and preventive focus in therapy is crucial to head off the very real risks of impaired functionality. Once the head and neck physician has diagnosed and staged a patient's cancer and established a plan of care—whether that involves surgery, radiation, chemotherapy or a combination of these—it is time for the SLP to step in.

"We need to begin before the cancer treatment begins, and continue during and after so we prevent the potential occurrencesof these devastating treatment effects," Lewin says.

Edward Damrose of the Stanford School of Medicine notes candidly that the concept of voice and swallowing problems after medical treatment is not something physicians often tackle adequately. Therefore, the SLP should feel secure in advocating for the patient for referral or therapy during treatment, he says.

Because the SLP may be spending an hour or more with the patient several times a week, he or she also is in a position to develop an enhanced relationship with the patient, Damrose says. An SLP who keeps abreast of the changing trends of HPV-positive cancer and its treatment can be a boon to his or her patients, who may be more comfortable speaking with their SLP about various aspects of the disease and its treatment.

"Whether SLPs like it or not, they will find themselves as the chief or lead," Damrose says. "They should be confident that their recommendations will be well received, because the SLP will be perceived as having the expert advice on these issues."

And the work is never straightforward: Data show that late radiation-associated swallowing dysfunction does not always respond to standard swallowing therapies, Lewin notes. In addition, data at M.D. Anderson—cited in a June article in ASHA Special Interest Group 13's Perspectives on Swallowing and Swallowing Disorders—indicate that the swallowing results for patients who do well early on are not durable. So researchers are looking at aggressive swallowing therapies—what some have termed "boot-camp therapy"—to see if they can make a difference in patients who are returning with significant swallowing deterioration as a result of the late effects of treatment.

Ann Kearney, the SLP and voice and swallowing specialist at Stanford who works closely with Damrose, also stresses the importance of starting treatment as soon as possible. For example, because HPV cancers tend to affect the base of the tongue, she recommends rigorous base-of-tongue strengthening exercises.

But Kearney is only too aware that the treatment patients undergo can be grueling, with painful side effects, regardless of the type or cause of cancer. She reminds SLPs to try to maintain their empathy and remember that the effects can be cumulative and get worse with each treatment.

Mucositis, for example, occurs when cancer treatments break down the epithelial cells lining the gastrointestinal tract, leading to open sores in the mouth. Pain from these ulcers and nausea caused by chemotherapy can result in an inability or lack of desire to eat, leading to nutritional problems, weakness and fatigue.

"It is a really tough treatment, so we have them try to do the oral motor exercises and swallow as much as they can, but sometimes they just can't," she says. "There may come a point where it is too hard, and that's OK . They have to get through the treatment, and whatever it takes to get through treatment, that is more important."

One of the biggest challenges for any patient, she says, is that even when they have completed their treatment regimen, the effects can last another six to eight weeks, and sometimes longer.

"You think you're done, but things can get worse before you really start to see improvements," Kearney says. "It's very discouraging. I tell patients from the get-go that this will happen."

Yet Kearney says the relative youth and high survival rates of HPV-positive cancer patients can be an advantage for coping.

"It is a big change from the past, with a whole different emotional component regarding treatment," she says. "They are much more motivated because they foresee having a long future ahead of them."

Elizabeth Thompson Beckley, is a freelance medical writer in Evergreen, Colo.

cite as: Beckley, E. T. (2013, October 01). Casualties of Intimacy. The ASHA Leader.

It Takes Two: HPV Vaccination for Boys and Girls

Human papillomavirus occurs in 25 percent of all head and neck squamous cell carcinomas, and 45 to 100 percent of all oropharyngeal squamous cell carcinomas. More than 100 strains of HPV cause health issues ranging from common warts to cancer. HPV 16 and HPV 18 are the types that cause about 70 percent of cervical cancers, and HPV 16 is the high-risk type linked to most oropharyngeal lesions. Researchers predict that in fewer than 20 years, there will be four times as much oropharyngeal cancer in men due to HPV than there will be cervical cancer in women.

For many working in the field and treating these patients, this potential epidemic of HPV-positive oral cancers bolsters the argument for HPV vaccination. The Centers for Disease Control and Prevention recommends HPV vaccination for girls and women ages 9–26 and for boys and men ages 9–21. Two HPV vaccines are available. Gardisil, manufactured by Merck & Co., protects against HPV 16, 18, 6 and 11, and is approved for preventing cervical, vaginal and anal cancers and genital warts in girls, and for anal cancer and genital warts in boys. Cervarix, made by GlaxoSmithKline, protects against HPV 16 and 18, and is approved for preventing cervical cancer in girls.

However, the efficacy of these vaccines to protect against oral HPV infection has not yet been proven. Therefore, vaccination cannot now be prescribed as the primary prevention for oropharyngeal cancer. Still, many who work in the field and have seen firsthand the devastation of these cancers advocate for the HPV vaccine to be given to both girls and boys.

"We probably are not vaccinating nearly as well as we should," says Edward Damrose, associate professor of otolaryngology at Stanford School of Medicine in Palo Alto, Calif. "Perhaps parents have a misunderstanding of what vaccinating may imply, that maybe it will be perceived as license to go have sex. And perhaps there is a hesitation on the part of primary care doctors to push this vaccine among their patients."

More advocacy is needed to get young boys, in particular, vaccinated for the HPV virus, concurs Cathy Lazarus, associate professor in the Department of Otorhinolaryngology-Head and Neck Surgery at Albert Einstein College of Medicine of Yeshiva University in New York.

"People really do not realize the number of individuals who get the virus and carry it for many years," says Lazarus, who also serves as research director of the THANC Foundation in the Department of Otolaryngology-Head and Neck Surgery at Beth Israel Medical Center. "There is a lack of education on public health. It is a very simple thing to have kids vaccinated."

John Centonze, an otolaryngologist with Finger Lakes Otolaryngology in Rochester, N.Y., also recognizes the hesitation, but emphasizes the potential benefits of HPV vaccination.

"If you can remove the virus, you can save a life," Centonze says.

Tests and Screens: SLPs as Public Health Advocates

Early detection of HPV might one day enable physicians to follow infected patients and act quickly should tumors appear. Recent studies show blood tests can detect antibodies to HPV 16 years before the development of mouth and throat cancer. However, researchers need to confirm and build on these findings to develop a readily available screening tool. Such a tool could still be years away.

In the meantime, SLPs are in a good position to offer physical head and neck cancer screenings to high-risk patients, says Edie R. Hapner, associate professor of otolaryngology-head and neck surgery at the Emory University School of Medicine in Atlanta. A screening—which includes exploring swallowing function, examining the oral cavity for tissue changes and listening for changes in vocal quality—is a chance to identify early signs of disease in people who may not have complaints or overt symptoms, or who appear to be asymptomatic, says Hapner, who also is ASHA vice president for planning and serves as director of speech-language pathology at the Emory Voice Center. A screening is not a diagnostic tool, but rather a chance to educate and target health issues in the larger community, she says.

Hapner is on the board of A Voice for Hope, an organization whose members have, since 2006, provided free head and neck cancer screenings to thousands of fans at NASCAR events. Because SLPs know and work with the mouth and throat so intimately, Hapner says, it is imperative for them to improve the public health in regard to head and neck cancer.

"We are sitting in a pretty position to educate people about head and neck cancer in general," she says, as well as to listen and act on complaints or anxieties. "If we find something concerning, instead of adding it to our notes or ignoring it, we need to say, 'The person who needs to look at this is an ENT doctor. Let me help you get to that doctor.'"


Ang, K. K., Harris J., Wheeler, R., Weber, R., Rosenthal, D. I., Nguyen-Tan, P.F., ... Gillison, M. L. (2010). Human papillomavirus and survival of patients with oropharyngeal cancer. New England Journal of Medicine, 363(1), 24–35.

Carnaby-Mann, G., Crary, M. A., Schmalfuss, I., & Amdur, R. (2012). "Pharyngocise": Randomized controlled trial of preventative exercises to maintain muscle structure and swallowing function during head-and-neck chemoradiotherapy. Journal of International Radiation Oncology*Biology*Physics, 83(1), 210–219.

Chaturvedi, A. K., Engels, E. A., Pfeiffer, R. M., Hernandez, B. Y., Xiao, W., Kim, E., ... Gillison, M. L. (2011) Human papillomavirus and rising oropharyngeal cancer incidence in the United States. Journal of Clinical Oncology, 29(32), 4294–4301.

Fakhry, C., Westra, W. H., Li, S., Cmelak, A., Ridge, J. A., Pinto, H., ... Gillison, M. L. (2008). Improved survival of patients with human papillomavirus-positive head and neck squamous cell carcinoma in a prospective clinical trial. Journal of the National Cancer Institute, 100(4), 261–269.

Fischer, C. A., Zlobec, I., Green, E., Probst, S., Storck, C., Lugli, A., ... Terracciano, L. M. (2010). Is the improved prognosis of p16 positive oropharyngeal squamous cell carcinoma dependent of the treatment modality? International Journal of Cancer, 126(5), 1256–1262.

Gillison, M. L., Broutian, T., Pickard, R. K., Tong, Z. Y., Xiao, W., Kahle, L., ... Chaturvedi, A. K. (2012) Prevalence of oral HPV infection in the United States, 2009–2010. Journal of the American Medical Association, 307(7), 693–703.

Haughey, B. H., Hinni, M. L., Salassa, J. R., Hayden, R. E., Grant, D. G., Rich, J. T. ... Krishna, M. (2011) Transoral laser microsurgery as primary treatment for advanced-stage oropharyngeal cancer: A United States multicenter study. Head Neck, 33(12), 1683–1694.

Hutcheson, K. A. (2013) Late radiation-associated dysphagia (RAD) in head and neck cancer survivors. Perspectives on Swallowing and Swallowing Disorders (Dysphagia), 22(2), 61–72.

Kreimer, A. R., Johansson, M., Waterboer, T., Kaaks, R., Chang-Claude, J., Drogen, D., ... Brennan, P. (2013) Evaluation of human papillomavirus antibodies and risk of subsequent head and neck cancer. Journal of Clinical Oncology. Published online June 17, 2013.


Advertise With UsAdvertisement