How to Maximize Comfort and Quality of Life With Advanced Head and Neck Cancer

“Ultimately, successful head and neck cancer care requires treating the whole person, not just the cancer,” says Karthik Rajasekaran, MD, a head and neck oncologic and microvascular reconstructive surgeon at Penn Medicine in Philadelphia. “The combination of thoughtful surgical planning, reconstructive expertise, rehabilitation, mental health support, and connection with other survivors can help patients regain not only function but also confidence and quality of life.”

“Head and neck cancer and its treatment can cause significant discomfort,” says Andrew G. Shuman, MD, a head and neck cancer surgeon at University of Michigan Medical School in Ann Arbor, Michigan. However, various pain management options are available, he adds. “Depending upon presenting symptoms and functional concerns, a multimodal approach using medications, health behaviors, and specific forms of therapy are often used together to individualize a strategy for each patient.”

Pain management in advanced head and neck cancer is somewhat unique. “Unlike pain in other parts of the body, patients cannot simply avoid using the affected area,” says Dr. Rajasekaran. “Functions such as swallowing, speaking, and eating are essential and can directly aggravate the tumor and surrounding tissues, making pain management especially important.”

Management interventions may include the following, according to Rajasekaran:

• Over-the-Counter Pain Medications If there are no contraindications, over-the-counter medications like acetaminophen (Tylenol) and ibuprofen (Advil, Motrin) can be taken in an alternating fashion, so that one medication is given approximately every three hours, he says. “This provides more consistent baseline pain control, rather than waiting until the pain becomes severe,” says Rajasekaran.

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• Opioids Talk to your doctor about possibly adding this type of medication, as needed, for breakthrough pain when the baseline regimen is insufficient. Opioids should only be taken as prescribed by your cancer care team and should always be used very carefully, as they can have side effects and be addictive.

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   “The goal is not necessarily to eliminate all pain, but to bring the pain to a manageable level — ideally around 3 out of 10 — while allowing the patient to continue eating, drinking, speaking, and maintaining their daily activities,” says Rajasekaran.
• Topical Anesthetic Preparations Your doctor may prescribe topical anesthetics such as “magic mouthwash,” which contains lidocaine (an anesthetic) and may provide temporary relief by numbing painful areas of the mouth or throat. However, the benefit is generally modest and short-lived, says Rajasekaran.

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• Antidepressants and Anticonvulsants Gabapentin and pregabalin, for example, are anticonvulsants that have been shown to help nerve-related pain.

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  Likewise, amitriptyline and duloxetine are antidepressants that also help nerve pain.

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• Local Nerve Blocks Anesthetic medications are injected close to a targeted nerve or group of nerves to “block” the pain.

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   “They can be considered in selected patients, although they can be technically challenging in the head and neck and do not consistently provide durable pain relief,” says Rajasekaran.
• Complementary and Integrative Approaches Integrative options such as acupuncture and other techniques have also proven successful in certain circumstances, says Dr. Shuman.

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• Cannabis There is growing interest in the use of cannabis and cannabinoids (chemicals in cannabis that cause drug-like effects) to treat cancer pain.

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  While research has been inconsistent regarding how effective cannabis is for pain in general, it’s been found to be most effective for cancer pain and nerve pain.

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  However, you should speak to your doctor before using cannabis, as evidence that it helps with head and neck cancer pain is limited. It may also cause side effects such as stimulating tumor growth.

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  Furthermore, while most states now permit cannabis for medicinal purposes, several don’t, so check your state laws.

“Tumors may narrow the airway in the throat or voice box, while surgery or radiation can cause swelling, thick secretions, or scarring that makes breathing more difficult,” says Kyle Hatten, MD, a head and neck surgeon at the University of Maryland Greenebaum Comprehensive Cancer Center and an associate professor of otorhinolaryngology at the University of Maryland School of Medicine in Baltimore. “New noisy breathing, rapidly worsening shortness of breath, difficulty speaking, or the sensation that the airway is closing should be treated as an emergency.”

Airway management is an important consideration from the time a head and neck cancer is diagnosed, explains Rajasekaran. “Airway function should be assessed proactively as part of the patient’s overall cancer evaluation and treatment plan,” he says. “It’s important for patients to be aware of [potential breathing difficulties] and communicate clearly with their medical professionals about any significant problems, as these may require urgent treatment.”

If there’s a chance that a tumor or treatment could compromise the airway, it’s safer to establish a plan before breathing becomes an emergency, adds Dr. Hatten. “Patients and families should understand which symptoms require an immediate call to the treatment team and which require calling 911,” he says.

Strategies to safeguard your airway include:

• Change Positions “Interventions may begin with positioning techniques that help patients breathe more comfortably, such as elevating the head,” says Hatten. You can try sitting upright and leaning forward slightly or using pillows to prop up your head and upper body while sleeping.

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• Use Controlled Breathing Techniques These techniques, such as pursed-lip breathing, can help make each breath you take more effective.

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  Pursed-lip breathing is done as follows: Breathe in through your nose and hold your breath for two counts, and then breath out slowly with your lips puckered. This will feel like you are whistling. Exhale for four counts. Always breathe out for a longer period of time than you breathe in.

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• Plan Activities Wisely Schedule your daily activities in a way that ensures you have time to do the things that are most important. Go at a pace that doesn’t tire you out and that works for you.

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• Try Oxygen Therapy If your oxygen levels are low, your doctor may suggest oxygen therapy. Oxygen levels can be measured by placing a small sensor on your finger. If levels are low, oxygen can be delivered through a mask or nasal prongs.

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• Run a Humidifier The lining of your mouth, nose, and throat may be more sensitive to dry air if you’ve undergone radiation or had certain surgical procedures, so using a humidifier can be helpful to ease breathing, says Hatten.

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  Alternatively, you can run a hot shower for about 10 minutes to steam up the bathroom and then breathe in the warm mist for 30 minutes.
• Address Underlying Causes An underlying cause, such as asthma or heart failure, may also contribute to breathing problems. “Patients with head and neck cancer may also experience medical problems that cause breathing difficulties that are not due to airway problems, and medical professionals can help make these diagnoses as well,” says Shuman.
• Find Ways to Relax Research suggests that certain relaxation and techniques, such as meditation, may ease stress and anxiety.

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  In turn, feeling more relaxed may help you breathe better.

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• Manage Secretions Radiation therapy can cause changes to your saliva. It can make your mouth dry, with saliva becoming thicker and more “sticky.”

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   Or it can also cause you to produce too much saliva.

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  It can also affect your ability to swallow normally, so you may be unable to clear the saliva in your mouth and throat, which can put you at risk of respiratory issues. Portable suction equipment allows you to clear your mouth of excess mucus or saliva, prevent airway blockages, and make breathing easier.

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  “For patients who have difficulty clearing saliva or other secretions, suction devices can provide temporary symptomatic relief and help patients manage secretions at home,” says Rajasekaran.
• Seek Medical Interventions In some circumstances, more definitive interventions may be necessary, such as medications to relieve swelling related to the cancer and its treatment, or surgeries to bypass or open the blocked airway, says Shuman. It’s important for patients to be aware of these possibilities and communicate clearly with their care team about any significant breathing problems, as these may require urgent care, he adds.
• Tracheostomy If the airway becomes significantly compromised or is expected to become compromised because of the tumor or treatment-related swelling, a tracheostomy may be necessary to establish a secure airway, says Rajasekaran.
  A tracheostomy is an alternative airway that allows you to breathe through a hole in the front of your neck.

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  However, a tracheostomy doesn’t necessarily have to be permanent. “In some patients, once the tumor has been treated and the airway is no longer compromised, the tracheostomy can be removed,” says Rajasekaran.

“One of the most significant, yet often underappreciated, challenges of head and neck cancer is the impact that the disease and its treatment can have on a patient’s appearance, self-image, confidence, and overall mental well-being,” says Rajasekaran. “Because the face, neck, mouth, and throat are so closely tied to identity and social interaction, changes related to surgery, scarring, swelling, or loss of function can have profound emotional consequences. Addressing these concerns should be an integral part of cancer care, rather than something addressed only after treatment is complete,” he adds.

Hatten agrees that changes in appearance and voice can have a profound effect on identity, confidence, relationships, and social interactions. However, it’s important to understand that these changes may evolve as time passes. “What patients see immediately after treatment is not always the final result, because swelling, bruising, weakness, and scarring often improve over time,” he says. “Reconstructive care, scar and lymphedema (swelling of lymph nodes) treatment, dental or facial prostheses, and speech and swallowing rehabilitation can further improve both appearance and function.”

Strategies for coping with appearance changes include the following:

• Know What to Expect Before undergoing surgery, speak with your healthcare team. Get the details about the procedure and what outcomes you can reasonably expect.

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  “Clear communication with medical professionals can assist patients in both knowing what to expect and how to manage the physical and emotional components of these [changes],” says Shuman.
• Seek Emotional Support It can be helpful to share your feelings with people who are close to you.

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  One recent study found that nearly half of all patients with head and neck cancer reported experiencing some degree of emotional distress.

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  The findings also highlighted the importance of emotional and social support in lowering the risk of distress. “Open conversations with loved ones can help patients recognize that emotional recovery is an important part of cancer care,” says Hatten.
• Connect With Others Talking to other people who have had a similar experience can be helpful.

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  “Peer support can also be particularly powerful because patients often find it helpful to speak with someone who has experienced similar changes and understands the challenges of head and neck cancer firsthand,” says Rajasekaran. Your healthcare team may be able to connect you with someone who wants to share their experiences. The Head & Neck Cancer Alliance has a program where it will match you with a mentor.
• Join a Support Group Support groups, both in person and virtual, provide a safe space for individuals to share experiences, feelings, and coping strategies. Some research suggests that participation in a support group improves both quality of life and survival.

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  Many hospitals and cancer centers offer support groups, as do cancer advocacy organizations. One organization, Support for People With Oral and Head and Neck Cancer, has more than 100 chapters throughout the United States.
• Get Specialized Counseling This is a more personalized type of therapy, where you speak with a licensed therapist, psychologist, or counselor to discuss your personal concerns. One-on-one therapy can help address emotional distress, anxiety, depression, or other psychological concerns. Sessions can be done either in person or via Zoom (or any virtual platform).

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• Look Into Reconstructive Care The goal of reconstructive surgery is to restore, as much as possible, not only your appearance but also your ability to function (for example, your ability to speak and eat).

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  The good news is that advances in surgical techniques have made it increasingly possible to improve both cosmetic and functional outcomes, says Rajasekaran. “From a surgical perspective, reconstruction and preservation of function are important components of treatment planning from the very beginning,” he says. “The goal is not simply to remove the cancer, but whenever possible, to reconstruct the patient in a way that allows them to return to as normal a life as possible.”