Rehabilitation, Follow-up and Living with Cancer of the Larynx

Rehabilitation

Learning to live with the changes brought about by cancer of the larynx is a special challenge. Rehabilitation is a very important part of the treatment plan. The medical team makes every effort to help patients return to their normal activities as soon as possible.

Each laryngectomee must be able to care for the stoma. Before leaving the hospital, the patient learns to remove and clean the trach tube or stoma button, suction the trach, and care for the area around the stoma. The skin is less likely to become irritated if it is kept clean.

When shaving, men should keep in mind that the neck may be numb for several months after surgery. To avoid nicks and cuts, it may be best to use an electric shaver until normal feeling returns.

Most people continue to use a stoma cover after the area heals. Stoma covers—such as scarves, neckties, ascots, and special bibs—can be attractive as well as useful. They help keep moisture in and around the stoma. Also, laryngectomees may be sensitive to dust and smoke, and the cover filters the air that enters the stoma. The cover also catches any discharge from the windpipe when the person coughs or sneezes.

Whenever the air is too dry, as it may be in heated buildings in the winter, the tissues of the windpipe and lungs may react by producing extra mucus. Also, the skin around the stoma may get crusty and bleed. Using a humidifier at home or in the office can lessen these problems.

A person who has had neck surgery may find that the neck is somewhat smaller. Also, the neck, shoulder, and arm may not be able to move as well as before. The doctor may advise physical therapy to help the person move more normally.

After surgery, laryngectomees work in almost every type of business and can do nearly all of the things they did before. However, they cannot hold their breath, so straining and heavy lifting may be difficult. Also, laryngectomees have to give up swimming and water skiing unless they have special instruction and equipment because it would be very dangerous for water to get into the windpipe and lungs through the stoma. Wearing a special plastic stoma shield or holding a washcloth over the stoma keeps water out when showering or shaving.

Learning to Speak Again

It's natural to be fearful and upset if the voice box must be removed. Talking is part of nearly everything we do, and losing the ability to talk—even temporarily—can be frightening. Patients and their families and friends need understanding and support during this very difficult time.

Until patients learn to talk again, it's important for them to be able to communicate in other ways. In the beginning, everyone who has had a laryngectomy has to communicate by writing, gesturing, or pointing to pictures, words, or letters. Some people like to use a "magic slate" for writing notes. Others use pads of paper and pens or pencils. It's handy to have a supply of pads that fit easily in a pocket or purse. In addition, some patients use a typewriter or computer. Others carry a small dictionary or a picture book (sometimes called a picture dictionary) and point to the words they need. Patients may want to select some of these items before the operation.

Within a week or so after a partial laryngectomy, most people can talk in the usual way. After a total laryngectomy, patients must learn to speak in a new way. A speech pathologist usually meets with the patient before surgery to explain the methods that can be used. In many cases, speech lessons can begin before the person leaves the hospital.

Patients may try out various new ways of talking. One way is to use air forced into the esophagus to produce the new voice (esophageal speech). Or the voice can come from some type of mechanical larynx. Some people rely on a mechanical larynx only until they learn esophageal speech, some decide to use this device instead of esophageal speech, and some use both.

Even though esophageal speech may sound low-pitched and gruff, many people want to use this method instead of a mechanical larynx because it sounds more like regular speech. Also, there's nothing to carry around, and the person's hands are free. A speech pathologist teaches the laryngectomee how to force air into the top of the esophagus and then push it out again. The puff of air is like a burp. It vibrates the walls of the throat, producing sound for the new voice. The tongue, lips, and teeth form words as the sound passes through the mouth.

For some laryngectomees, air for esophageal speech comes through a tracheoesophageal puncture. The surgeon creates a small opening between the trachea and the esophagus. A plastic or silicone valve is inserted into this opening through the stoma. The valve keeps food out of the trachea. When the stoma is covered, air from the lungs is forced into the esophagus through the valve. This air produces sound by making the walls of the throat vibrate. Words are formed in the mouth.

It takes practice and patience to learn esophageal speech, and not everyone is successful. How quickly a person learns, how natural the new voice sounds, and how understandable the speech is depend partly on the type and extent of the surgery. Other important factors are the patient's desire to learn and the help that's available. Patience and support from loved ones are important, too.

A mechanical larynx may be used until the person learns esophageal speech or if esophageal speech is too difficult. The device may be powered by batteries (electrolarynx) or by air (pneumatic larynx). The speech pathologist can help the patient choose a device and learn to use it.

One kind of electrolarynx looks like a small flashlight. It has a disk that makes a humming sound. The device is held against the neck, and the sound travels through the neck to the mouth. (This device may not be suitable for people who have had radiation therapy.) Another type of electrolarynx has a flexible plastic tube that carries sound to the person's mouth from a hand-held device.

A pneumatic larynx is held over the stoma and uses air from the lungs instead of batteries to make it vibrate. The sound it makes travels to the mouth through a plastic tube.

Regular follow-up is very important after treatment for cancer of the larynx. The doctor will check closely to be sure that the cancer has not returned. Checkups include exams of the stoma, neck, and throat. From time to time, the doctor does a complete physical exam, blood and urine tests, and x-rays. People treated with radiation therapy or partial laryngectomy will have laryngoscopy.

People who have been treated for cancer of the larynx have a higher-than-average risk of developing a new cancer in the mouth, throat, or other areas of the head and neck. This is especially true for those who smoke. Most doctors strongly urge their patients to stop smoking to cut down the risk of a new cancer and to reduce other problems, such as coughing.

Living with Cancer

The diagnosis of cancer can change the lives of patients and the people who care about them. These changes can be hard to handle. It's natural for patients and their families and friends to have many different and sometimes confusing emotions.

At times, patients and their loved ones may feel frightened, angry, or depressed. These are normal reactions when people face a serious health problem. Most people handle their problems better if they can share their thoughts and feelings with those close to them. Sharing can help everyone feel more at ease and can open the way for people to show one another their concern and offer their support.

Worries about tests, treatments, hospital stays, learning to talk again, and medical bills are common. Doctors, nurses, speech pathologists, social workers, and other members of the health care team can help calm fears and ease confusion. They can also provide information and suggest resources.

Patients and their families are naturally concerned about what the future holds. Sometimes they use statistics to try to figure out the chance of being cured. It is important to remember, however, that statistics are averages based on large numbers of patients. They can't be used to predict what will happen to a certain patient because no two cancer patients are alike. The doctor who takes care of the patient is the best one to discuss that person's outlook (prognosis).

People should feel free to ask the doctor about their prognosis, but not even the doctor knows for sure what will happen. Doctors may talk about surviving cancer, or they may use the term remission rather than cure. Even though many people with cancer of the larynx recover completely, doctors use these terms because the disease can recur.

Support for Cancer Patients

Living with a serious disease isn't easy. Cancer patients and those who care about them face many problems and challenges. Finding the strength to cope with these difficulties is easier when people have helpful information and support services.

People who have cancer of the larynx may have concerns about the future, family and social relationships, and finances. Sometimes they worry that changes in how they look and talk will affect the way people feel about them. They may worry about holding a job, caring for their family, or making new friends.

The doctor can explain the disease and give advice about treatment, going back to work, or daily activities. It may also help to talk with a nurse, social worker, counselor, or member of the clergy, especially about feelings or other very personal matters.

Many patients find that it's useful to get to know other people who are facing problems like theirs. They can meet other cancer patients through self-help and support groups. Often, a social worker at the hospital or clinic can suggest local and national groups that can help with emotional support, rehabilitation, financial aid, transportation, or home care.

The American Cancer Society is one such group. This nonprofit organization has many services for patients and their families. Local offices of the American Cancer Society are listed in the white pages of the telephone book.

The International Association of Laryngectomees publishes educational materials and sponsors meetings and other activities for people who have lost their voice because of cancer. Many local laryngectomy clubs are members of this Association. For more information, patients may contact the national office. Information also is available from local American Cancer Society offices.

The public library is a good place to find books and articles on living with cancer. Cancer patients and their families can also find helpful suggestions in the National Cancer Institute booklets Taking Time and Facing Forward.

Information about other programs and services is available through the Cancer Information Service. The toll-free number is 1-800-4-CANCER (1-800-422-6237).

Each year, Medical College of Wisconsin physicians care for more than 180,000 patients, representing nearly 500,000 patient visits. Medical College physicians practice at Children's Hospital of Wisconsin, Froedtert Memorial Lutheran Hospital, the Milwaukee VA Medical Center, and many other hospitals and clinics in Milwaukee and southeastern Wisconsin.