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Resources for Patients With Head and Neck Cancer

This information includes resources for patients with head and neck cancer to help manage the side effects of treatment, improve quality of life, and receive emotional support. It includes suggestions from survivors, as well as from doctors and nurses who treat patients with head and neck cancer.

A diagnosis of head and neck cancer can be very stressful. You are likely to face many tasks that are new to you as you move through your treatment. You will need to learn new self-care skills. And, you may be dealing with a new image of yourself. These can all be challenging issues. Knowing what resources are available can help you deal with these changes.

Always check with your doctor and nurse before trying anything in this booklet. You may also want to check with your insurance provider to see which services are covered.

Managing Symptoms

Dry mouth

When radiation treatment is used near your mouth or throat, your salivary glands (glands that produce saliva) are affected. This often results in dry mouth. How long this lasts depends on the extent of your treatment. However, there are ways to decrease the discomfort. Try to avoid:

  • Caffeine
  • Tobacco
  • Acidic foods and drinks (fruits, lemon juice, vinegar, tomatoes)
  • Narcotic pain medications (codeine, hydrocodone, oxycodone)
  • Hot and spicy foods

Below are suggestions that may help when you have dry mouth.

  • Keep a glass of water at your bedside at night.
  • Use a bedside humidifier.
  • Drink plenty of liquids.
  • Keep your mouth and lips moistened with Surgilube®, olive oil, or cocoa butter.
  • Moisten your food with lots of gravy, sauces, or juices.
  • Avoid chocolate, potatoes, and starchy foods. They can be hard to swallow.
  • Chew sugar-free gum or suck on hard candies. They can help you make saliva.

Tell your doctor if you have dry mouth. He or she can recommend an oral saliva substitute for you to try. You can buy most of these without a prescription at your local drug store. Oral saliva substitutes are not a cure for loss of salivary gland function, but they can give you temporary relief of dry mouth. Here is a list of some oral saliva substitutes:

  • Entertainer's Secret®
  • Moi-Stir® Oral Spray
  • Mouthkote® Oral Moisturizer
  • Colgate Optimoist®
  • Salivart® Oral Moisturizer
  • Xero-Lube®
  • Biotene® Oral Balance®

Sore mouth

If your mouth is sore or swallowing is difficult, soft foods may help, such as:

  • Milkshakes
  • Custards
  • Scrambled eggs
  • Mashed vegetables

Avoid foods that may irritate your mouth, such as:

  • Spicy foods
  • Salty foods
  • Citrus fruit or drinks (orange, lemon, or lime)
  • Tomato sauces

Difficulty swallowing or inability to swallow

Radiation therapy, surgery, or a combination of both treatments can cause swelling or loss of important nerve function. This can make it difficult for you to swallow. Some survivors can swallow liquids such as Ensure® or soups. Others can swallow purées or soft, wet foods.

For those who can't swallow at all, a tube called a percutaneous endoscopic gastrostomy (PEG) can be inserted through the abdominal (belly) wall into the stomach. Liquids are poured into the body through the tube. Your doctor can tell you more about this process.

If you are having trouble swallowing, discuss it with your doctor or nurse. It may also be helpful to meet with a speech/swallowing therapist.

Here are some suggestions to help with swallowing:

  • Mix your food with sauces.
  • Consider blending your favorite foods.
  • Eat several small meals or snacks during the day instead of having 3 large meals.

Loss of speech or difficulty speaking

You may have lost your speech or have trouble speaking if your treatment has affected your larynx (voice box), tongue, or other parts of your mouth and throat. The extent of the loss depends on the degree of your treatment. Your healthcare team will work with you and discuss your options both during and after treatment. It may be helpful to meet with a speech/swallowing therapist.

Dental problems

If your treatment has affected your salivary glands, you may have problems with your teeth. When saliva is not being produced, bacteria will stay in your mouth and on your teeth longer. This increases your risk of tooth decay.

After treatment, it will be important for you to take good care of your teeth and gums. This is also referred to as “dental hygiene.” Oral saliva substitutes can also help. See a dentist regularly if you are not making saliva or have had radiation therapy.

Changes in appearance

If your appearance will change, ask for a referral to speak with a counselor. Talking with a professional about the issue may help you deal with any distress.

Disfigurement is often an issue for some patients. Speak to your doctor about getting plastic surgery and about prosthetics to improve your appearance.

Pain

Pain is sometimes a part of healing and recovery. It can come and go and may last for an indefinite time. If you have pain, talk to your doctor. MSKCC has pain specialists that can help manage your pain through the use of medication and behavioral approaches.

For more information, go to the MSKCC Pain Management website at: www.mskcc.org/cancer-care/palliative-care/pain-management

Improving Your Quality of Life

The Integrative Medicine Service

The Integrative Medicine Service offers complementary therapies for patients and their families. These therapies are designed to help manage the side effects of treatment and improve your quality of life. These therapies include:

  • Massage
  • Visualization
  • Spiritual healing
  • Art and music therapy
  • Acupuncture
  • Meditation
  • Hypnotherapy
  • Mind-body therapies
  • Guided imagery
  • Nutritional and herbal counseling

The Integrative Medicine Service also offers various exercise classes. Exercise can be a great way to work off stress and increase your energy. It also may help with your physical and emotional adjustments as you recover from treatment. Classes are offered in:

  • Yoga
  • Chair Aerobics
  • T'ai chi/Qi Gong
  • T-Tap - The Wellness Workout
  • Pilates Mat

To find out more about these services, or to make an appointment, call (646) 888-0800. You can also visit the Integrative Medicine Service website at: www.mskcc.org/cancer-care/outpatient/bendheim-integrative-medicine

Nutritional counseling

Living with head and neck cancer can make it harder for you to get the nutrition you need. The challenges you face will depend on the type of cancer you had. They also depend on the kind of treatment you received.

We recommend that you meet with a dietitian. He or she can work with you to make sure that you are getting the nutrition you need. To schedule an appointment with an outpatient dietitian, call (212) 639-7071.

Smoking and alcohol use

Head and neck cancers are rare in the general population. However, the risk is much higher for people who use tobacco and drink alcohol often. You are at higher risk for a second cancer if you continue to smoke and drink after your treatment.

For help with quitting smoking or other tobacco use, contact the Tobacco Treatment Program at the Counseling Center. This program is tailored to each patient's needs. To find out more about the program, call (212) 610-0507 or go to: www.mskcc.org/cancer-care/counseling-support/cancer-patients

If you are concerned about your alcohol use, we can help you. Contact the Counseling Center at (646) 888-0100.

Getting Emotional Support

Feelings of anxiety or depression are common among patients with head and neck cancer. These feelings can start at the time of diagnosis. During your treatment, MSKCC has many professionals who can help you cope. They include social workers, psychiatrists, chaplains, and patient-to-patient volunteers.

You may not notice feelings of anxiety until your treatment is finished, when you expect to resume your life. Many patients are also afraid that their cancer will return. These feelings can be overwhelming and difficult to explain to those not affected by cancer.

Emotional support is key to your recovery process. Talk to your doctor or nurse if you think you are having feelings of anxiety or depression. They can help you find the emotional support you need to get through this time.

Below, you will find some helpful resources for emotional support.

The Counseling Center
(646) 888-0100
The Counseling Center provides counseling for patients and their families and friends to deal with the emotional impact of cancer.
 
Patient-to-Patient Support Program
(212) 639-5007
You may find it comforting to speak with a cancer survivor or caregiver who has been through a similar treatment. Through the Patient-to-Patient Support Program, you have a chance to speak with former patients and caregivers.
 
Resources for Life After Cancer (RLAC) Program
(646) 888-4740

At MSKCC, care doesn't end after active treatment. The RLAC Program is for patients and their families who have finished treatment. This program has many services, including seminars, workshops, support groups, counseling on life after treatment, and help with insurance and employment issues.

The RLAC Program offers a support group specifically for survivors of head and neck cancer called Head, Neck, and Oral Cancers: Moving Forward. In this group, you will have a chance to discuss your needs and concerns with other survivors and healthcare team members. To register, please call (646) 888-4740. You can also visit the support group website at: www.mskcc.org/cancer-care/survivorship/upcoming-programs/head-neck-and-oral-moving-forward?dtstart=1360870200&dtend=1360875600

This group meets on the second Thursday of each month, from 2:30 pm to 4:00 pm.

Additional Resources

The following are resources outside of MSKCC that you may find helpful.

American Cancer Society
The American Cancer Society has an enormous amount of information and resources relating to all aspects
of cancer.
 
Association of Cancer Online Resources (ACOR)
ACOR is a collection of online cancer communities that allow users to connect with others affected by cancer to share information and support.
 
Cancer Care
(800) 813-HOPE (4673)
Cancer Care is a nonprofit organization that offers support services to anyone who is affected by cancer.
 
Cancer Information Service (CIS)
1-800-4-CANCER
CIS provides information about many aspects of cancer, including diagnosis, treatment, prevention, and
clinical trials.
 
Light of Life Foundation
The mission of this foundation is to improve the quality of life of thyroid cancer patients through research, awareness, education, and patient support.
 
National Cancer Institute (NCI)
The NCI website has detailed information on specific types of cancer.
 
Support for People with Oral and Head and Neck Cancer (SPOHNC)
1-800-377-0928
SPOHNC is a patient-directed, self-help organization that is dedicated to meeting the needs of patients with head and neck cancer. This organization produces a monthly newsletter and offers support through a survivor-to-survivor network. There are various local chapters in New York State.
 
Thyroid Cancer Survivors' Association, Inc. (ThyCa)
ThyCa was created and is maintained by thyroid cancer survivors. The website includes a network of services that link thyroid cancer survivors to healthcare professionals around the world.