From describing surgery for head and neck cancer patients to guiding them through survivorship struggles, oncology nurses are the navigators for what can be life-changing treatment.
Heightened anxieties come with these cancers because treatment most often involves a combination of surgery, chemotherapy and radiation. Head and neck cancers make up about 3% of all cancers, reports the National Cancer Institute, and can affect appearance and threaten basic life functions, such as speaking and eating.
Part of a nurses role is reassuring patients — often middle-aged and providing for their families — that survival rates are improving and head and neck cancers, even in stage IV, are by no means a death sentence.
Alicia Price, RN, ANP, MSN, a nurse practitioner in the medical oncology department at Mount Sinai Medical Center in Manhattan, said head and neck cancer is curable.
“For head and neck patients, any nodal disease in their necks makes them a stage IV,” Price said. “What were really dealing with is a locally advanced cancer. Theyre not having a cancer thats spread to their liver and bones and all these other organs. But when you say stage IV to most people, they think, ‘Im definitely dying. Even at stage IV, were dealing with a curable disease.”
Rita Babu, RN, BSN, OCN, an office practice nurse who works with Price at Mount Sinai, said scheduling intensive treatments can be especially difficult because it involves coordinating the surgical team with the medical and radiation oncology teams.
A calendar, usually for seven weeks, helps patients and families visualize the treatments. The calendar outlines when side effects may start, what medicines patients should take and how often, and includes phone numbers for the nutritionist, social worker, nurses and physician. The concurrent radiation and chemotherapy may come either before or after surgery.
“In week two or week three, they may start experiencing pain from the radiation therapy, pain in their throat or mouth,” Babu said. They may have nausea, constipation or acid reflux, and the timing for these side effects is outlined in the calendar.
Head and neck cancers occur twice as often in men than in women, NCI statistics show. Babu and Price said sometimes male patients are reluctant to admit their pain and fears and, if they are the family breadwinners, they are worried about taking too much time off from work. Babu said she works with patients and their employers to help minimize the time missed. But most people dont have the energy to keep working after about week four, she said.
At Mount Sinai, the nurses meet weekly to discuss each patient with the radiation oncology team, social workers and a nutritionist. The nurses and social workers also help match former patients with new patients for one-on-one mentoring.
Its one thing for nurses to tell a patient “what youre going through is normal for the stage in the treatment. Youre expected to feel pain, youre expected to feel nauseous, youre going to get better,” Babu said. “Its different when you have someone who has gone through it telling you this.”
Swallowing may be difficult
Depending on the location of the tumor, swallowing can be a long-term issue for head and neck cancer patients. This may be caused by surgical removal of parts of the throat involved in swallowing or by scarring from radiation.
“Often this is a short-term problem but sometimes it can be chronic,” said Catherine Sarta, RN, BSN, head and neck cancer coordinator, Montefiore Einstein Center for Cancer Care in the Bronx. “We have a speech and swallow team here who get involved in these issues starting while the patient is still in the hospital.”
Nurses do a great deal of pretreatment counseling so patients know what to expect. For swallowing, she said, patients need to exercise their swallowing muscles — going through the motions of swallowing — even though they may not be able to actually swallow for a period during and after radiation. “Its the use-it-or-lose-it principle,” she said.
During treatment, nurses closely monitor weight as swallowing difficulties make adequate nutrition difficult, she said.
Primary causes of cancer
Tobacco and alcohol use are important risk factors for head and neck cancers. Nurses are key in connecting patients with the help they need to stop drinking and smoking.
Donna Marie Curran, RN, BSN, OCN, office practice nurse who works in head and neck surgery outpatient services at Memorial Sloan-Kettering Cancer Center in Manhattan, said one thing researchers are studying is whether having smoking cessation nurses speak to patients directly will help more patients stop smoking.
“Any patient who currently smokes has to be referred for smoking cessation,” Curran said. “The patient can refuse it, but at least the smoking cessation team will contact them.”
She said they used to ask patients whether they would be willing to have a smoking cessation consult and a lot of them would just say “No” right off the bat.
Nurses also work to screen patients for alcohol use and work with them to stop drinking as they prepare for surgery. People used to drinking every day may experience withdrawal symptoms that can complicate postoperative recovery, such as delirium tremens and withdrawal.
Though smoking and drinking are the biggest causes of head and neck cancers, the human papillomavirus also is a growing factor.
Recent studies show about 60% of oropharyngeal cancers may be linked to HPV, which is spread through sexual contact, according to the Centers for Disease Control and Prevention.
Price said nurses may need to counsel patients who are carrying guilt that sexual behavior may have caused their cancer. Its important to let them know that researchers dont yet know why most people carry the virus, but some people shed it and some hold onto it and develop head and neck cancer, Price said.
Options when speech is lost
One of the greatest fears for some head and neck cancer patients is the loss of their voice, either temporarily or permanently.
Preparing patients for a total laryngectomy takes considerable education, said Sandra Tushingham, RN, NP, who works with a team of head and neck surgeons at Beth Israel Medical Center in Manhattan. Involving families with ways to communicate is important for these patients. She encourages family members to bring a whiteboard, for instance, so they can write out conversations.
Taking out a patients voice box has lifelong implications. But there are options.
One is a voice prosthesis, which emits speech that may sound slightly hoarse and a little deeper than the patients normal voice, Tushingham said. Another option is electrolarynx, a mechanical version of your voice projected with a device placed under the jaw. With this option, a patients voice wont be as strong as with a prosthesis, she said. Working with patients and families takes a great deal of compassion and sensitivity from nurses, along with education, she said.
… nurses tend to be good at taking that step back and saying, ‘How is this affecting you?
Latent effects may go unreported
After surgery, radiation and chemotherapy, nurses start a long-term relationship with patients, guiding them through survival with either one-on-one interactions or support groups.
The need for this is highlighted by data released in May from a University of Pennsylvania study that found many late effects from head and neck cancers may be going unreported to physicians.
Patients in the study who filled out a LIVESTRONG care plan online reported significant late effects included difficulty swallowing/speaking (83%), decreased saliva production (88%), decreased neck mobility (60%), tinnitus (40%) and reduced cognitive function (53%).
They also reported discussing these care plans with their physicians in only 55% of the cases. The most common reasons for not sharing this information with providers was “I did not think they would care,” and “I did not want to upset or anger them,” the study reported.
Brandon Hayes-Lattin, MD, senior medical adviser for LIVESTRONG, said one reason communication may suffer is because providers and patients may stop discussing head and neck late effects such as dry mouth because its understood to be such a common side effect.
Tools such as LIVESTRONGs care plans, available at LIVESTRONGCarePlan.org and through the OncoLink website, may help bridge that communication gap, he said.
Nurses roles are critical in asking the right questions long after the surgery.
“The doctor is going to go through the minutiae of the primary cancer treatment, but nurses tend to be good at taking that step back and saying ‘How is this affecting you?” Hayes-Lattin said. “It may be from an oncology perspective things are going great, but that may not reflect the day-to-day experience.” •
Marcia Frellick is a freelance writer.