Head and Neck Cancer Survivorship Follow-Up Questions

This page is for people who have finished treatment for head and neck cancer. It covers common late effects such as thyroid, mouth, swallowing, hearing and jaw problems, and the questions to bring to survivorship visits.

"Head and neck cancer" covers the oropharynx, larynx, hypopharynx, oral cavity, nasopharynx, salivary glands and sinuses, and NCI keeps a separate summary for each. The figures below are drawn from the oropharyngeal summary, and most of them describe people whose treatment included radiation to the neck. If you had surgery alone, or your tumor started somewhere else, ask your team which of these late effects are on your list and which are not. The questions still work, but the percentages may not be yours.

Radiation to the neck often hits the thyroid gland. NCI reports that an underactive thyroid follows in 30 to 40 percent of people who had external beam radiation to the whole gland.

One study set it higher. In two randomized trials followed for a median of about 41 months, 55 percent developed an underactive thyroid. Most of those cases were picked up on a blood test before symptoms appeared.

NCI says thyroid function is checked before treatment and as part of follow-up afterward. Ask when yours was last drawn and when it is due again.

Dry mouth is the most common lasting effect of radiation here. In one NCI trial report, moderate or worse dry mouth affected 55 percent of people at six months. It fell to 25 percent at one year and 16 percent at two years.

That downward curve matters. Dryness is often worst early and improves.

Teeth are the part people are not warned about. In an NCI-reported radiation series, jawbone breakdown (called osteoradionecrosis) of grade 2 or higher occurred in 6 percent. NCI also notes that regular dental exams are part of follow-up. Ask who your dentist is going to be.

Swallowing muscles stiffen if they are not used. Ask to be referred to a speech and swallowing therapist, and ask for exercises rather than only advice.

If you still have a feeding tube, ask what has to happen before it comes out.

Cisplatin can affect hearing. NCI reports permanent hearing loss in 40% to 80% of adults treated with it, and says survivors need ongoing hearing checks. Ask about a hearing test, especially if you notice ringing or trouble following speech in a noisy room.

NCI's head and neck fact sheet says jaw stiffness and a smaller mouth opening can follow radiation.

Stretching and therapy are easier to start early than to catch up on later. Ask for a referral rather than waiting to see if it settles.

• How often should my thyroid blood test be repeated?
• Which dentist follows me now, and how often?
• Why can a tooth not simply be pulled after radiation?
• Will my dry mouth improve, and what helps in the meantime?
• Can I see a speech and swallowing therapist?
• Should I have my hearing tested?
• What is the plan for my neck stiffness and jaw opening?

Ask for a written list of every treatment you had, including radiation dose and drug names. Every specialist you meet from here will ask for it.

Cancer Staging and Biomarker Testing explain the terms that show up in head and neck cancer follow-up notes. Clinical Trial vs Standard Treatment, Palliative Care, and Questions to Ask Your Doctor cover what to raise at a head and neck cancer survivorship visit.

These questions were drawn from current patient guidance for head and neck cancer:

• NCI PDQ — Oropharyngeal Cancer Treatment (Adult, Patient Version)
• NCI PDQ — Oropharyngeal Cancer Treatment (Adult, Health Professional Version)
• NCI — Head and Neck Cancers Fact Sheet