Survivorship: Life After Head & Neck Cancer

Long-Term and Late Effects of Treatment

There are a number of treatments used for head and neck cancers such as surgeries, radiation, and medications (chemo, targeted therapy). These can result in long-term effects (those that continue after treatment such as fatigue) or late effects (those that develop months or years after treatment). These effects can cause trouble chewing, swallowing, speaking, and breathing. Specific issues can include:

• Aspiration (the inhalation of food or liquids into the lungs, which can lead to pneumonia).
• Decreased range of motion in the neck and shoulders.
• Difficulty opening the mouth fully (trismus).
• First bite syndrome (pain brought on by salivation or chewing).
• Spinal accessory nerve palsy (weakness of muscles in the neck and shoulder area).
• Lymphedema (swelling as a result of lymph nodes removed in surgery).
• Dry mouth (xerostomia).
• Changes in how you taste, smell, and hear.
• Changes in how you look and speak.

These effects may be temporary, last for months after treatment, or become permanent. Some issues don't happen right away but develop months to years after treatment. Physical, occupational, and lymphedema therapists, physiatrists (cancer rehab doctors), speech and swallowing experts, dietitians, plastic surgeons, prosthetic manufacturers, pain management, and orthodontic specialists can all be helpful in managing these concerns.

When to Call Your Provider

Be aware of signs of cancer coming back (called recurrence), which may include:

• Weight loss.
• Coughing or spitting up blood.
• Difficulty swallowing or opening your mouth fully, a sore in your mouth that does not heal, a change in your voice, or earache (particularly when swallowing).
• Contact your healthcare provider if any concerning symptoms occur.

Nutrition, Speech, and Swallowing

It is important that you can get in enough calories to prevent weight loss. If you have difficulty eating and/or maintaining your weight, you should consult with an oncology dietitian for help. Some survivors may need a feeding tube to provide nutrition if eating and/or swallowing are extremely difficult. A speech and swallowing pathologist (SLP) can help you manage issues with speech and using devices to communicate if your speech is not clear. An SLP can also help manage swallowing issues - even when they develop years after treatment.

Healthy Living

Work to make healthy behavior changes or just getting back to healthy behaviors you had prior to treatment.

• If you are a smoker, ask your provider to help you quit. Smoking can greatly increase the risk of a second cancer or recurrence.
• Limit the amount of alcohol you drink, if any.
• Get regular exercise. This can mean a walk with a friend - you may not be ready for much more! Start where you are and gradually increase your activity.
• Good dental care and regular follow-up with a dentist are especially important after surgery and/or radiation. You are at a greater risk of developing tooth decay (cavities) because of the dry mouth that often results from surgery and/or radiation.

Quality of life can be a big concern for survivors of head and neck cancers. Depression and anxiety are common issues faced by survivors. You should feel free to discuss your concerns with your healthcare provider. Joining a support group can be a great way to see how others live life to the fullest after cancer. SPOHNC.org is a support organization specifically for people with head and neck cancers. They have chapters around the United States and a helpline you can call. You may also face challenges due to changes in your appearance, ability to speak or eat. Joining groups and accessing supportive counseling can help you manage these concerns.

Key Takeaways

• Report any signs of recurrence, including weight loss, coughing up blood, difficulty swallowing, difficulty opening your mouth, sores in your mouth, change in voice, or earache (especially when swallowing).
• Speak with a dietitian for any nutrition or weight concerns.
• There are a number of specialists who can help with the late effects of head and neck cancer treatment. Ask your oncology team to refer you to specialists based on your specific concerns.
• See your dentist twice a year and practice good oral care. Your dentist may recommend frequent fluoride treatments.
• Do not smoke. If you do smoke, ask your provider for help with quitting. Limit how much alcohol you drink, if any.
• Report any concerns of depression or anxiety to your healthcare provider. Consider counseling or support groups to help you cope.