Head and Neck Cancer Survivorship

“We are talking about disease where you really do have long-term survivors.”
Ezra Cohen, MD

If you’ve been diagnosed with head and neck cancer (HNC), you are considered a cancer survivor. You will be one for the rest of your life. If you’ve completed your treatment, you’re probably ready to move on with your life. You may face some new challenges as you adjust to life after treatment.

A Primer on Head and Neck Cancer

HNC refers to a group of tumors that arise in the head and neck around the air and digestive track. These tumors may show up in the lips, mouth, tongue, epiglottis, throat, salivary glands, or sinuses.

For most patients, HNC is found only in the head and throat (local disease). Local disease is usually curable. Few patients when they are diagnosed have HNC that has spread to other parts of their body, or metastasized.

The two main causes of HNC are tobacco use and a virus called HPV (human papillomavirus). People with HNC caused by HPV tend to do better. The number of people with or who have survived HNC caused by HPV is growing. It is not known if vaccines for HPV protect against the types of HPV that cause HNC, and not many people (especially boys and men) receive the vaccine in the U.S.

Treatment for HNC may include radiation therapy, surgery, or chemotherapy. Sometimes these treatments may be used together. Doctors select the best treatment based on your tumor size, location, and type. Doctors also consider your overall health and preferences when they plan treatment.

Follow-up: An Important Component of After Treatment Care

Regular check-ups with your doctor and dentist will help you avoid problems after your treatment is done. You will have to see your doctor more often just after treatment ends, and then less often the longer you’re out from treatment.

The following is a basic list of follow-up checkpoints to note after treatment ends. Each patient’s needs vary based on his or her own disease and treatment. Above all, if you have problems with side effects of treatment or if new symptoms arise, contact your doctor.

During Year 1

Doctor: During the first month after therapy, your doctor may ask you to visit one to two times per week to make sure treatment side effects are going away. Your doctor will also make sure you are eating well and following therapy.

Imaging:

  • PET scan: Your doctor may ask you to return for a PET scan 10 to 12 weeks after you finish radiation or chemotherapy to make sure all of the tumor is gone.

Dentist: See your dentist every three months. Treatments for HNC can put you at risk for cavities because of dry mouth or injury to teeth or gums. Regular dental care will keep your teeth healthy and your mouth feeling good.

Rehabilitation (rehab): Stick to your therapy for rehab.

During Years 2 to 3

Doctor: The first two to three years out of therapy are the highest risk period for your tumor to return, so you should be checked regularly.

Imaging:

  • Nasopharyngeal laryngoscopy [pronounced nay-zoh-far-en-JEE-al luh-RIN-gah-skoh-pee]: You should go for a nasopharyngeal laryngoscopy every three to four months to check for recurrence of the tumor. Some tumors don’t show up well on CT scans, so the laryngoscopy is very important. During a laryngoscopy, a thin tube-like device is inserted into your nose or mouth that helps your doctor look at these areas.
  • CT scan: The first two to three years out of therapy, you should receive a CT scan of the neck and chest every six months.

Dentist: See your dentist every six months, or more often.

During Years 3 and Beyond

Doctor: After three years, you should see your doctor every six months. Beyond year five, your doctor may ask to see you once a year.

Imaging:

  • CT scan: Your doctor may ask you to undergo a CT scan once a year.

Dentist: See your dentist at least every six months.

Side Effects of HNC and Its Treatment: What You Need to Know

It is normal for side effects of HNC and its treatment to come up months or years after your treatment ends. These side effects depend on the type of treatment you get and the location of your tumor.

Dry mouth (xerostomia [pronounced zero-STOH-mee-uh]) / Dental decay

Teeth and saliva glands often get radiation meant for the tumor. Radiation to these areas can lead to dry mouth and injury to teeth and gums. To avoid dental cavities and other problems in your mouth, you need to visit your dentist often and take very good care of your teeth and gums. Some things that help dry mouth are drinking lots of liquids, using artificial saliva, and eating sugar-free candy. Your dentist may ask you to wear a fluoride tray to keep your teeth healthy.

Mood

Many patients feel stressed, scared, sad, and/or depressed during or after HNC treatment. About five out of 10 patients with HNC will have major depression during and/or after their therapy. If you feel stressed, sad, or depressed, make sure to talk to your doctor about it.

“Major depression is a real problem for patients with head and neck cancer. We refer about half of our patients, maybe more, to some sort of psychosocial therapy.” – Ezra Cohen, MD

Swelling (lymphedema [pronounced lim-fi-DEE-muh])

You may develop swelling of the head or neck in the weeks or months after treatment. It usually gets better, but it can last 1 to 1 ½ years. Swelling is a normal part of healing.

Hearing loss

Some patients are given a chemotherapy drug called cisplatin. Cisplatin can cause hearing loss or ringing in the ear. For most patients, these problems stop when they stop receiving cisplatin. But, for a small number of patients, the problems continue for a long time or do not go away even after they stop getting the drug. There are many options to help with these hearing problems.

Neck, arm, and shoulder problems

Surgery to remove your tumor can hurt a nerve that runs along your neck (the 11th cranial nerve) and make it hard to move your arm, shoulder, or neck. Physical therapy may help if this happens.

Your doctor may send you for rehabilitation if you have stiff muscles or joints.

Pain

Your doctor may be able to help with pain that lasts more than three months. He may offer pain medicine, nerve blocks, alternative medicine, physical therapy, or counseling.

Skin color change

Changes in skin color are common in areas that received radiation. Color may keep changing over time (as long as three years after radiation), and may include loss of color or increased color. Most of the time, a change in skin color does not mean that anything is wrong. But, if a change in skin color worries you, you should tell your doctor.

Sores in mouth and throat

Treatment may cause your mouth and/or throat to get sore or red. For most patients, this will go away after treatment ends. If you have sores or redness, tell your doctor, and he/she can provide help to make you feel better.

Speech and swallowing

HNC and its treatment can change the way you eat, swallow, or talk. It is important to start speech and swallowing rehab early—even before your treatment starts. It is also very important to keep up speech and swallowing rehab before, during, and after therapy.

Taste

Nearly all patients will have some loss of taste from radiation therapy. Most patients regain their sense of taste. However, it can take months for taste to return. When your taste returns, things may not taste the same as they did before therapy.

What to report to your doctor:

    • New or unrelieved pain
    • Stalled or reversed progress with rehabilitation
      • It can take months for some things to get back to normal. Let your doctor know if you stop getting better or if you get worse. For example:
        • Change in how you eat or swallow
        • Change in your voice or ability to talk or do exercises
    • New lump or mass
    • Discoloration and lesions
      • Changes in skin color or new sores that develop more than three months after treatment
      • Sores that do not heal

Healthy Lifestyle Choices: You Can Make a Difference in Outcome

Be sun safe.

  • Parts of the body that got radiation will be very sensitive and get easily sunburned for the rest of your life. These parts of the body should always be kept out of the sun, covered, or protected with sunscreen of SPF50 or higher.

Eat well.

Exercise.

  • Exercise helps with overall well-being. Also, even light exercise (for example, daily 30-minute walk) helps with blood flow during treatment and after, while healing occurs.

Follow your rehab plan.

Each patient’s plan will be different. Most patients will need help with their diet at some time and all will require some speech and/or swallow therapy at some time during or after their therapy. Your rehab plan may include:

  • physical therapy
  • dietary counseling
  • speech therapy
  • swallow therapy
  • stoma care
  • reconstructive surgery

Keep your appointments with doctors, dentists, and therapists.

Practice good oral hygiene.

  • Follow recommended schedule for visiting your dentist.
  • Report any mouth sores or changes in mouth health to your dentist or doctor (for example, redness, tenderness, bleeding, pain, or sensitivity).
  • Brush your teeth and tongue two times a day with a soft-bristle toothbrush.
  • Floss your teeth one to two times per day.
  • Limit sugar.
  • Ask your dentist if you should use daily fluoride.

Stop using tobacco.

  • Tobacco use is a risk factor for HNC. Alcohol by itself is not a risk factor for HNC, but, when used by people who use tobacco, it increases risk for HNC.

Summary

You can take control of your life after HNC treatment. Make the most of your health, and avoid problems by sticking to follow-up and rehab plans, and following your doctor’s instructions. Support and help is always available from your doctors and nurses, if you need it.

Category: Experts Speak

Tags: Cancer Survivorship, CancerForward, dental care, Dry mouth, exercise, Ezra Charles, Head and Neck Cancer, hearing loss, HNC, HPV, Kim Farina, laryngoscopy, Major depression, nasopharyngeal, oral cancer, Pain, PET scan, skin color, Swelling, Tobacco