Metastatic Head and Neck Cancer: What to Ask

This page is for people with head and neck cancer that has spread, and their families. It explains key tests and treatments and suggests questions for your care team.

Head and neck cancer is a group, not one disease. The mouth, the throat behind the mouth, the voice box and the area behind the nose all behave differently.

The NCI summary cited here covers the oropharynx. That means the tonsils, the base of the tongue, the soft palate and the throat walls. The trial data below comes from squamous cell cancer, which starts in the flat cells lining these areas.

Cancers of the mouth, voice box, nasopharynx, sinuses and salivary glands are covered by separate summaries and treated differently. Ask which exact site (subsite) and which cell type (histology) yours is. That answer affects every later decision on this page.

HPV (human papillomavirus) is a common virus that can cause some throat cancers. For tumors of the oropharynx, NCI reports whether the tumor is linked to HPV using a lab stain called p16. This is a routine part of the workup for that subsite.

Ask for your result. Ask what it means for you now that the cancer has spread, and be ready for a careful answer rather than a simple one.

NCI describes a large trial of 882 people with advanced head and neck cancer. They received pembrolizumab alone, pembrolizumab with chemotherapy, or cetuximab with chemotherapy.

PD-L1 is a protein on some cancer cells. Tumors were scored for PD-L1 using a combined positive score. In that trial, 85 percent scored 1 or higher and 43 percent scored 20 or higher. A score was not required to enter.

Ask what your score is. Ask whether it points to immunotherapy alone or to immunotherapy given with chemotherapy.

Cisplatin is hard on kidneys and hearing. NCI's summary also covers cetuximab and carboplatin in this disease.

Ask what your kidney function is today. Ask what would be used instead if cisplatin is ruled out.

Radiation given twice to the same tissue carries real risk. NCI reports jawbone breakdown after radiation in this region.

Ask exactly where your first course went and how much it delivered. Ask what a second course would risk near the jaw and the large neck arteries.

These are the emergencies to plan for before they happen. Ask what the plan is if breathing becomes difficult, and who to call.

Ask for a speech and swallowing therapist and a dietitian to see you early, before problems set in. Whether a feeding tube is needed, and when, is a decision they and your team make with you. They weigh how you are swallowing now, what treatment is planned, your weight and your own wishes. You can get the assessment booked early and ask what would change the answer.

• Which subsite did my cancer start in?
• Is my tumor p16 positive?
• What is my PD-L1 combined positive score?
• Does that mean pembrolizumab alone, or with chemotherapy?
• Can I have cisplatin, and what is the alternative?
• Where did my radiation go, and can that area be treated again?
• What is the emergency plan for my airway?

• Call 911 or go to an emergency department if your breathing is noisy or you cannot get enough air, or if you cannot swallow your own saliva. Go too for bleeding from the mouth, the neck, or a wound, especially a sudden gush of bright red blood. Go as well when the thermometer shows 100.4°F (38°C) or higher, or chills take hold, while cisplatin, carboplatin or any other chemotherapy is part of your treatment. Mouth sores, a feeding tube site and treated skin on the neck all give infection a way in, and CDC warns that a fever during chemotherapy is a medical emergency. It says to call your doctor right away. Do not drive yourself.
• Call your care team the same day if you cough or choke on drinks, if a feeding tube blocks or comes out, if mouth pain or sores stop you taking fluids, or if the neck becomes newly swollen, red or hot.
• Call your care team right away if you are on pembrolizumab and have a new cough or breathlessness, or diarrhea several times more often than usual.
• Call your care team right away if you are on cisplatin and have new ringing in the ears or a change in hearing. MedlinePlus lists hearing problems on its call-your-doctor-immediately list for cisplatin.
• Call your care team within a day or two if swallowing is steadily getting harder, if your voice is weakening or getting hoarser, if weight is dropping, or if skin in a treated area is breaking down.

Cancer Staging and Biomarker Testing explain the terms behind a metastatic head and neck cancer diagnosis. Clinical Trial vs Standard Treatment, Palliative Care, and Questions to Ask Your Doctor cover the choices that come next with metastatic head and neck cancer.

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

• NCI PDQ — Oropharyngeal Cancer Treatment (Adult, Patient Version)
• NCI — Head and Neck Cancers Fact Sheet
• NCI — Infection and Neutropenia During Cancer Treatment
• NCI — Immune Checkpoint Inhibitors
• CDC — Watch Out for Fever (Preventing Infections in Cancer Patients)