Author: Marijke Vroomen Durning, RN
When Cindy Stemple of Westerville, Ohio, noticed a sore on her tongue, the last thing she imagined was that she may have head and neck cancer. After all, she was only 27 years old. She finally went to see her dentist when the sore wouldn’t heal. Since Stemple didn’t have any known risk factors for head and neck cancer, the dentist didn’t expect cancer either. After trying several treatments, they decided it was time for a biopsy. Stemple still wasn’t concerned.
“It wasn’t even in the realm of possible things,” she says. “I didn’t even take anybody to the appointment when I got the results and found out it was cancer because it was the furthest thing from my mind.”
She received a diagnosis of stage 3 oral squamous cell carcinoma — which is a cancer that occurs in the mouth and/or throat.
Tremendous Change in Head and Neck Cancer
Historically, head and neck cancer, the seventh most common cancer globally, was predominantly diagnosed in older individuals and was often linked to tobacco and alcohol use. As smoking rates began to decline, so did tobacco- and alcohol-related cases among older individuals.
But head and neck cancer rates began rising in another group — younger and middle-aged adults — driven by HPV infections, predominantly HPV type 16, which has been shown to be a clear risk factor for head and neck cancer as well as cervical cancer.
HPV-positive oropharyngeal cancers in the United States increased from 16.3% of head and neck cancers in the 1980s to more than 70% in the 2000s. Researchers, however, expect an eventual decrease as the effects of the HPV vaccine take hold, but it may take up to three decades to get to that point.
“I’ve been in the field for about 25 years, and it has changed tremendously,” says Adena Dacy, associate director of health care services in speech-language pathology at the American Speech-Language-Hearing Association in Rockville, Maryland. “Most of my patients tended to be older, usually with a long history of tobacco or alcohol use. Today we still see some of that, but we are seeing much younger patients, often (those who are) tobacco- or alcohol-free.”
Improving Survival While Increasing Quality of Life
In most cases, different treatment approaches are used for the two groups. For instance, since many patients with tobacco- or alcohol-related head and neck cancer are often older and have other comorbidities, treatment options are limited.
On the other hand, patients who are younger and healthier are likely better able to tolerate side effects and extended treatment regimens, if deemed necessary. Additionally, HPV-related head and neck cancers are more likely to respond better to treatments, meaning less aggressive therapy may be used.
Initially, the primary treatment of head and neck cancer revolved around removing as much of the tumor as possible to extend life.
But surgeries often left patients disfigured, and high doses of radiation destroyed healthy tissues along with the tumors. These issues led to a significantly diminished quality of life for many patients, including not wanting to appear in public and being unable to enjoy a meal with friends and family.
In the early 1990s, researchers investigated a combination of chemotherapy and radiation aimed at better organ preservation. New drugs were also approved, such as Salagen (pilocarpine) to increase saliva production, which in turn reduced complications caused by dry mouth.
Survival rates also improved.
In 2016, the Food and Drug Administration approved Opdivo (nivolumab) after clinical trials showed that the drug doubled one-year survival (the percentage of patients who remained alive from diagnosis or start of treatment) for recurrent or advanced head and neck cancers and caused fewer severe side effects, compared with standard-of-care chemotherapy.
Shifting the Focus of Treatment
The earlier the disease is detected, the better the survival rate. In fact, some estimates suggest that patients with locally advanced HPV-related head and neck cancer have up to an 80% long-term survival rate.
These results, according to researchers, depict how harsh treatments can have a long- lasting effect on a patient’s quality of life.
“Over the past 20 years, we’ve seen more of an emphasis on organ preservation and less aggressive surgical intervention,” Dacy says. “(For) 70% of the people who came in years ago with cancer of the throat or larynx, the gold standard was that they would have a total laryngectomy.”
Now, surgical treatment is less invasive and more focused on improving quality of life, according to Dacy.
“Twenty or 30 years ago, the only focus was on a cure,” says Dr. Scott Roof, a head and neck oncologic and reconstructive surgeon at Mount Sinai Health System in New York.
“Now it’s somewhat shifted to (asking), ‘Not only can we cure patients, but how are we going to leave them with the best functional outcomes?’ Speech and swallowing are integral to what we do in our everyday life and how we interact with people.”
Location, Location, Location
The location of the cancer also plays a role in long-term recovery, according to Roof.
“The head and neck involve everything from your lips all the way down to your esophagus,” he explains. “If you have cancer in your mouth, the side effects are different than if it’s in the larynx, or voice box.”
The location of the tumor also affects the type of long-term rehabilitation required after treatment.
Dr. Theodoros (Ted) Teknos, president and scientific director for the University Hospitals Seidman Cancer Center at University Hospitals Cleveland Medical Center and deputy director of the Case Comprehensive Cancer Center, explained that some head and neck cancers result in more extensive deficiencies than others because of tumor location.
Despite the widespread adoption of advanced reconstructive surgery, according to Teknos, cancers of the tongue base, jaw and throat often leave patients with both functional and cosmetic abnormalities, which require extensive rehabilitation.
In general, there are many possible side effects from head and neck cancer treatment. Surgery may lead to difficulties with chewing and swallowing, affecting not only nutritional status but socialization. Speech may be difficult or impossible for some patients. And if the surgery involves removing the larynx, cutting into nerves or removing lymph nodes, patients may be left with weakness in the shoulder and neck muscles.
Radiation alone or in combination with other treatments may also cause short-term sores and pain in the mouth, difficulty swallowing, changes in taste, nausea and even difficulty opening the mouth as wide as before treatment.
But even if these side effects don’t occur or resolve over time, radiation treatment may lead to the development of radiation fibrosis syndrome (injury to the skin, connective tissues, muscles and more) weeks or even years after treatment.
“Functional deficits can arise many years after the initial treatment,” Teknos explains. “Patients (with HPV-related cancers) are typically treated with chemo and radiation therapy. And while those are highly effective treatments typically delivered to younger patients, as the patient ages, their ability to compensate for the damage caused by therapy decreases and they start developing swallowing and musculoskeletal deficits many years after their treatment.”
Teknos also mentions that about a quarter of patients develop significant hearing loss, which may require hearing aids.
Long-term Effects Become Less Common
But as treatments improve, these long-term effects occur less frequently.
Dacy notes that she has seen a reduction in the effect of radiation fibrosis syndrome on patients’ quality of life compared with when she started working with this patient group. The reason, she says, is because of lower dose regimens, newer delivery methods and preventive habilitation techniques.
Mike Jirousek, from Hamden, Ohio, received a diagnosis of head and neck squamous cell carcinoma four years ago at the age of 59. After noticing a rapidly growing lump in his throat, he went to a local urgent care clinic.
The attending physician was so concerned that Jirousek was immediately transported to the hospital by ambulance.
“They were afraid of (the lump) closing off my airway,” he says.
After a CT scan, Jirousek was rushed to the UH Seidman Cancer Center in Cleveland.
“I was admitted to the hospital that day, and things began to move very quickly,” he says.
The treatment plan was to remove the tumor and then start chemotherapy and radiation. But his treatment didn’t stop there, as Jirousek met with several other care professionals.
According to Teknos, a team approach is necessary for the recovery of patients with head and neck cancer.
He notes that this multidisciplinary team includes speech pathologists, audiologists, physical medicine/ rehab experts, physical therapists and nutritionists, along with specialists in dentistry, prosthodontics and anaplastology (the use of removable facial and ocular prosthetics).
Over time, there was a shift toward preparing patients for the aftereffects of surgery and other debilitating treatments.
“We used to get (other health care professionals) involved on the back end, once patients had gone through their treatments and were dealing with some of the functions afterward,” Roof recalls. “We’ve realized this is not as good, so there’s a big push to have patients work with people like speech and language pathologists pre-treatment, during treatment and then post-treatment.”
If scarring develops, Roof mentions, patients need to counteract the side effect by regularly using the muscles and structures to prevent stiffening of the area.
He likened it to the notion of if you don’t use it, you lose it.
Now, patients are also encouraged to swallow, eat, drink and speak during treatment. Actively participating in these activities may help retain some of those functions after treatment has stopped.
“We learned that if you can encourage patients to learn to swallow, eat, drink and speak throughout their treatment, they’re more likely to preserve (these functions) after treatment,” says Roof.
Jirousek says his first head and neck cancer diagnosis and treatment happened so fast that he was ineligible for prehabilitation, but he notes he met with therapists when his treatment began.
“I met with the oncologists, radiation specialist, and then the nutritional experts and rehabilitation as well,” he recalls.
The therapists helped Jirousek prepare for potential difficulties with swallowing and limited nerve function in his neck and shoulder.
“During my first time, I was convinced that I would be able to keep eating and swallowing, and I was able to,” he says.
Unfortunately, Jirousek’s disease returned 18 months later, and his treatment was more invasive. He underwent a radical neck dissection — a notable surgery that consists of a significant removal of muscle, tissue and lymph nodes from the collarbone to the jaw — followed by chemotherapy and radiation.
As a result, Jirousek needed a feeding tube, and although he remains on the feeding tube, he is still able to speak.
Feeding tubes are not uncommon among patients treated for head and neck cancer. Data from a study published in 2017 in the journal Cancer demonstrated that more than 50% of patients with head and neck cancer required a feeding tube.
Of note, in many cases feeding tubes are temporarily placed during and after treatment. But they are often removed later as a patient’s swallowing function returns.
Stemple, whose disease returned five years ago, says that she didn’t see rehabilitation therapists before treatment for her primary diagnosis. She only recalls seeing them briefly during her radiation treatment.
It was after her treatment was completed that she received extensive therapy.
“I would definitely have been open to doing other therapies before treatment,” she says. “It wasn’t really presented to me as an option at the time.”