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.

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."