Coping with Head and Neck Cancer
An important step in managing your head and neck cancer and its treatment is to be informed. Cancer is a complex and challenging disease that is treated in many different ways. The more you know about your head and neck cancer diagnosis, treatment options and possible side effects, the easier it will be to talk with your health care team to determine the best treatment plan for you. Head and neck cancer can affect all areas of your life, below is a list of resources to help with your general concerns:
- Cost of Care
- Finding support groups
- Dealing with Depression and Anxiety
- Coping for Caregivers
- Dealing with the side effects of cancer treatment (ex: fatigue, nausea, sleep changes)
It is helpful to know what the common short and long-term side effects of head and neck cancer are and how to manage them. Everyone experiences treatment and side effects differently, but it can help to feel prepared. Here are some ways to help cope with head and neck cancer:
After a surgery for hypopharyngeal cancer, you may need treatment to restore speech. It may take some time for you to learn new ways to communicate following treatment. Below are the primary ways to restore speech:
Tracheo-esophageal puncture (TEP)
This is the most common way that surgeons try to restore speech. This procedure creates a connection between the windpipe and esophagus through a small hole at the stoma site. A silicone device called a voice prosthesis is placed in a small hole created between the windpipe and esophagus to create voice. Patients work with a speech-language pathologist to learn to talk using this device.
The battery-operated device is placed at the corner of your mouth or against the skin of your neck. When you press a button on the device, it makes a vibrating sound. By moving your mouth and tongue, you can form this sound into words. You’ll need training with a speech therapist to learn to use it properly.
With training, some people learn to swallow air into the esophagus (the tube that connects your mouth to your stomach) and force it out through their mouth. As the air passes through the throat it will cause vibrations which, with training, can be turned into speech. With the development of TEP speech, esophageal speech is less frequently used.
If you have surgery for hypopharyngeal cancer, you will learn to care for your stoma (breathing hole in your neck) after you recover. You will need to keep the stoma clean, or else it will get blocked. Your doctor and nurses will teach you how to keep it clean, remove mucus from it, and cover it when you are outdoors. They will also explain how to bathe, exercise, cough, and sneeze with your stoma.
Dealing with Stigma
Smoking, using tobacco products, drinking alcohol, and getting the HPV virus are risk factors for head and neck cancers. If this may have caused your cancer, you may feel judged or to blame. In addition, treatment side effects can cause changes to your appearance and ability to eat. This can leave you feeling self-conscious in social situations. There are strategies for coping with these feelings. To combat blame, shame and stigma:
- If you smoked, used tobacco products, or drank heavily, forgive yourself. You cannot change the past.
- If someone asks whether you smoked, ask them, “Why do you ask?” Often people are just trying to distance themselves from their own risk of cancer and may not realize how they sound.
- If you hear negative remarks, use the opportunity to educate the speaker. If you ever smoked, you might say, “Yes, head and neck cancer can be caused by smoking, but there are other causes as well.” If you never smoked, use this as a teaching moment and say, “Many people who have never smoked still get head and neck cancer.” If someone mentions head and neck cancer being caused by HPV, you might say “Did you know that most people will have the HPV virus at some point in their lives?”
- Find support from other people with head and neck cancer. You might learn ways they have found to cope with stigma, changes in body image, or feelings of guilt and focus on living today.
- You will probably need to take a break from your regular hobbies and social activities during treatment and recovery. Work with your rehab team to try to get back involved in those same hobbies and social activities, if that is possible. Look for new ways to be social with others.
- People who are isolated from a social support network may be more at risk for things like depression or stress-related illness.
After head and neck surgery, always tell any dentist you see about your treatment. Ask them if they have experience treating head and neck cancer patients. If they don’t, ask for a referral to a dentist who does.
Exercise is important to keep your body and mind healthy after head and neck cancer treatment. Ask your health care team what exercises — such as walking or chair yoga — you can safely do. Click here for more information on exercise during and after cancer treatment.
Talk About Your Appearance
Prepare how you will answer when someone asks you about the changes to your appearance, your speech, or your eating habits. Practice your answer with caregivers and family members. If you cannot speak, or are concerned about people understanding you, have your answer printed on a card you can hand to someone.
Prepare for social gatherings where there will be food. For instance, let your host know in advance it may be uncomfortable for you to sit at a table when everyone else is eating. You could come later after everyone has eaten. If you don't want to eat in public, try to find different ways to be social with friends and family so you don't feel isolated.
You can continue to travel after you have a laryngectomy, but it takes planning. Bring along a folder with your medical information in case you need to receive medical care while away from home. Also carry a kit with supplies to care for your stoma. If you are flying, keep this in your carry-on bag — don’t check it.