Frequently asked questions
Radiation mucositis is a painful and ulceration of the mouth whereas Pharyngitis is inflammation of the pharynx and both are common side effects of radiation therapy to the head and neck. They can cause painful swallowing known as odynophagia and sometimes begin as early as 2-3 weeks after starting treatment and can peak at 2-4 weeks once radiation ends. This can result in severe throat and mouth pain often leading to enteral nutrition or needing a tube for feeding in order to maintain nutrition. During treatment, your oncology team will monitor and manage these side effects weekly. Some common treatments can include:
Topical pain relief (e.g., viscous lidocaine, cocaine mouthwash)
Opioid medications for more severe pain
Antifungal treatments like Nilstat drops and bicarbonate rinses for oral thrush, a common secondary infection
You should contact your oncology team is these symptoms persist 6-8 weeks after completion of treatment in order to schedule an evaluation.
Koh J, Walsh P, D'Costa I, Bhatti O. Head and neck squamous cell carcinoma survivorship care. Aust J Gen Pract. 2019;48(12):846-848. doi:10.31128/AJGP-08-19-5032
Lymphedema is a chronic swelling of the skin or soft tissue that can occur after radiation or surgery. It occurs from damage to the lymphatic system leading to build up of fluid. This is a common side effect in head and neck cancer patients. Some of the first symptoms include neck tightness or stiffness before you can see the swelling. Treatment can include compression therapy, manual lymphatic draining and exercise programs. Ask your oncology team for a referral to physical therapy as early treatment can help mitigate future complications
Koh J, Walsh P, D'Costa I, Bhatti O. Head and neck squamous cell carcinoma survivorship care. Aust J Gen Pract. 2019;48(12):846-848. doi:10.31128/AJGP-08-19-5032
Once completing treatment you should expect to see your oncology team:
Year One: every 1-3 months
Year Two: every 2-6 months
Year three through 5: every 4-8 months
After 5 years: every 12 months
Imaging will be completed after 3-6 months following treatment completion and then at the discretion of your oncology team. Imaging can include Magnetic Resonance Imaging (MRI), Computed Tomography (CT) or a Positron Emission Tomography (PET) to evaluate for potential reoccurrence. Should you develop new symptoms of hoarseness, problems with swallowing, new lumps or masses, oral bleeding or coughing up blood please contact your oncology team as soon as possible to set up an appointment.
American Head and Neck Society. Surveillance and Education. AHNS. https://www.ahns.info/survivorship_intro/surveillance-education/
Voice and speech changes may be temporary or long-term, depending on the treatment area. A speech-language pathologist can evaluate and assist in recovery. Ask your oncology team for a referral.
Hazzard E, Gulliver S, Walton K, McMahon AT, Milosavljevic M, Tapsell L. The patient experience of having a feeding tube during treatment for head and neck cancer: A systematic literature review. Clin Nutr ESPEN. 2019;33:66-85. doi:10.1016/j.clnesp.2019.07.005
After completing treatment, head and neck cancer survivors should monitor for any new or persistent symptoms. While these symptoms may be troubling it does not mean that you have a recurrence but rather report them immediately to your oncology team.
New or worsening pain in the throat, mouth, or neck
Difficulty swallowing (dysphagia)
Difficulty speaking or voice changes (e.g. hoarseness)
New lump or swelling in the neck or under the jaw
A persistent sore or ulcer in the mouth
White or red patches on the gums, tongue, or mouth lining
Keep track of any new symptoms by filling out a symptom tracker.
Some patients work during their treatment while some opt to take a leave of absence while undergoing treatment and in the weeks following completion. Some patient work under special conditions or accommodations. Returning to work can depend on a variety of factors. Talk to your oncology team to determine the best course of action for you. They will be able to advise you on how soon you can return to your normal activities and may be able to help you with employment forms.
Many cancer survivor groups, counseling, and online communities can offer peer support and shared experience. Be sure to check out the community forum to hear about similar experiences from other cancer patients. Other resources include:
Changes in taste and loss of appetite are common side effects after head and neck cancer treatment, especially following radiation or chemotherapy. This results from damage to the taste buds, gustatory nerves or the central nervous system. These symptoms can make eating less enjoyable and may contribute to weight loss or poor nutrition.
Some tips to help with taste or loss of appetite:
Experiment with flavors and temperatures
Maintain good oral hygiene
Eat smaller, frequent meals.
Consult a registered dietician
Stay hydrated
If you are having maintaining a steady weight or losing weight please contact your oncology team as there may be a need for nutritional supplementation.
Alfaro R, Crowder S, Sarma KP, Arthur AE, Pepino MY. Taste and Smell Function in Head and Neck Cancer Survivors. Chem Senses. 2021;46:bjab026. doi:10.1093/chemse/bjab026
When discussing your cancer history, focus on facts: the type of cancer, treatment completed, any ongoing limitations or accommodations needed, and your current functional status. Be sure to share information that you are comfortable with when talking to employers. Provide the necessary information required for insurance companies. Please visit your insurance companies website to contact a representative.
Body image can affect up to 75% of head and neck cancer survivors. This can cause social anxiety, emotional challenges and a decreased quality of life. Challenges can include personal dissatisfaction with appearance, being upset when others comment about the way you look, attempting to conceal signs of your head and neck treatment. Hiding from others at meal times for concerns of drooling or eating differently. Behavioral therapy can reduce body image issues and improve physical perceptions. Seek help from support groups and consider therapy and counseling tailored to body image concerns. Talk to your providers about reconstructive, rehabilitative or cosmetic options.
Cancer Rehab can help with side effects caused by cancer and its subsequent treatment which can include help with physical, mobility and memory problems. These side effects can delay your return to your normal activities and cancer rehab can help you return back to normal sooner. They can help improve your quality of life and reduce some of the side effects such as dysphagia (trouble swallowing), trismus (muscle spasms) that many head and neck cancer patients experience.
It is provided by medical professionals such as physical therapist, occupational therapist, speech language pathologist, dietitians and psychologist. Ask your oncology team if this is something that you would be interested in.
Cheng JT, Ramos Emos M, Leite V, et al. Rehabilitation Interventions in Head and Neck Cancer: A Scoping Review. Am J Phys Med Rehabil. 2024;103(3S Suppl 1):S62-S71. doi:10.1097/PHM.0000000000002384
