Completing treatment can be both stressful and exciting. You will be relieved to finish treatment, yet it is hard not to worry about cancer coming back. (When cancer returns, it is called recurrence.) This is a very common concern among those who have had cancer.

It may take a while before your confidence in your own recovery begins to feel real and your fears are somewhat relieved. You can learn more about what to look for and how to learn to live with the possibility of cancer coming back in our document, Living with Uncertainty: The Fear of Cancer Recurrence, available at 1-800-227-2345.

Follow-up care

Patients with cancer of the larynx and hypopharynx are at risk for developing recurrences or new cancers in the head and neck area. Therefore, they must be observed closely after treatment. The health care team will decide which tests should be done and how often based on the patient's initial stage, type of treatment chosen, and response to that treatment.

These cancers recur most frequently in the first 2 years after treatment, so your head and neck will be examined (often including laryngoscopy) about every other month during the first year after treatment and quarterly during the second year. Follow-up may then be spread out to 3-, 6-, and 12-month intervals as time progresses and there is no evidence of recurrence. Chest x-rays and other imaging studies may be used to watch for a recurrence, metastasis, or a new tumor, especially if new symptoms develop. If your thyroid gland received radiation as part of your treatment, you may also need regular blood tests to check its function.

You should report any new symptoms right away because they may prompt your doctor to do tests that could help find recurrent cancer as early as possible, when the likelihood of successful treatment is greatest.

Restoring speech after total laryngectomy

After a total laryngectomy, you will not be able to speak using your vocal cords. However, there are several options for restoring speech after total laryngectomy. Losing your voice box to cancer no longer means losing your ability to talk. Learning to speak again will take time and effort. You will need to see a speech therapist who is trained in the rehabilitation of people who have had a laryngectomy. The speech therapist will play a major role in helping you to learn to speak.

Esophageal speech: After a laryngectomy, your windpipe (or trachea) has been separated from the mouth and food pipe, and therefore, you can no longer expel air from the lungs through your mouth to speak. With training, some patients can swallow air and force it through their mouth. As the air passes through the throat it will cause vibrations which, with training, people can turn into speech. This is the most basic form of speech rehabilitation. With the advent of new devices and surgical techniques, learning esophageal speech is often not necessary.

Tracheoesophageal puncture (TEP): This is the most common way that surgeons try to restore speech. TEP is done either at the time of surgery or later. This procedure creates a connection between the windpipe and food pipe through a small puncture at the stoma site. A small one-way shunt valve placed into this puncture restores your ability to force air from the lungs into the mouth. After this operation, you can cover your stoma with a finger to force air out of your mouth, producing sustained speech. This takes practice, but after surgery you can work closely with speech pathologists to learn this technique.

Electrolarynx: If you cannot have a TEP because of certain medical reasons, or while you are learning to use your TEP voice, you may use electrical devices to produce a mechanical voice. These battery-operated devices are either placed in the corner of the mouth or against the skin of the neck. When you press a button on the device, it will make a vibrating sound. By moving your mouth and tongue, you can form this sound into words. You will need training with a speech therapist to learn to use it properly.

Stoma care following total laryngectomy

Having a stoma instead of a larynx means that the air you breathe in and out will not pass through your nose or mouth. As air passes through the nose or mouth, it is humidified, warmed, and filtered (dust and other particles are removed). After a laryngectomy and tracheostomy, the air reaching the lungs will be dryer and cooler. This may irritate the lining of the breathing tubes and cause thick or crusty mucus to accumulate.

For this reason, you should learn how to take care of your stoma (periodic suctioning, cleaning, and use of a humidifier). Your doctors, nurses, and other health care professionals can teach you how to care for and protect your stoma, which includes precautions to keep water or small particles from falling into the windpipe. Support groups formed by other patients who have also had a laryngectomy can provide essential information on stoma care and use of products for protecting and cleaning the stoma.

Sexual impact of laryngectomy

Laryngectomy changes not only your physical appearance with the stoma but also your speech and breathing. Sexual intimacy may be affected because of uncomfortable feelings about appearance and awkwardness. However, there are things you can do to decrease these feelings during intimacy.

A scarf, ascot, or turtleneck shirt can look nice and hide the stoma cover. Even during sexual activity, a stoma cover may look more appealing than a bare stoma.

During sexual activity, a partner may be startled at first by breath that hits at a strange spot. On the positive side, one patient quipped, "Now when I kiss, I never have to come up for air!"

You can lessen odors from the stoma by avoiding garlic or spicy foods and by wearing perfume, cologne, after-shave, or lotion.

Sometimes problems in speaking interfere with the communication for some couples. If you have learned esophageal speech, talking during lovemaking is not a big problem. It does take more effort, though, and you lose some of the emotional overtones. A speech aid built into the stoma might also work well. However, neither method lets you whisper romantically in your partner's ear.

If you use a hand-held speech aid, communication during sex is likely to be awkward and distracting. You can say a great deal sexually, however, by guiding your partner's hand or using body language.

Talking is not needed in many sexual situations. With a new partner, you may want to discuss the kinds of touching and positions you like before you start making love.

Smoking and alcohol use

If you smoke or drink, it is very important to quit. Quitting can reduce your chance of developing a new cancer, which is a serious problem among laryngeal and hypopharyngeal cancer survivors. It can also help improve your appetite and your overall health.

Because these cancers develop in smokers, other smoking-related cancers such as lung and oral cancers are often seen later. Avoiding risk factors like smoking and drinking is the best way to prevent these cancers. Also, the high risk of developing a new cancer is one reason that people with cancers of the larynx and hypopharynx will need to continue follow-up exams for the rest of their lives.

Seeing a new doctor

At some point after your cancer diagnosis and treatment, you may find yourself in the office of a new doctor. Your original doctor may have moved or retired, or you may have moved or changed doctors for some reason. It is important that you be able to give your new doctor the exact details of your diagnosis and treatment. Make sure you have the following information handy:

• a copy of your pathology report from any biopsy or surgery
• if you had surgery, a copy of your operative report
• if you were hospitalized, a copy of the discharge summary that every doctor must prepare when patients are sent home from the hospital
• if you were treated with radiation, a copy of your treatment summary
• finally, since some drugs can have long-term side effects, a list of your drugs, drug doses, and when you took them

It is also important to keep medical insurance. Even though no one wants to think of their cancer coming back, it is always a possibility. If it happens, the last thing you want is to have to worry about paying for treatment. Should your cancer come back, our document, When Your Cancer Comes Back: Cancer Recurrence gives you information on how to manage and cope with this phase of your treatment. You can get this document by calling 1-800-227-2345.

Lifestyle changes to consider during and after treatment

Having cancer and dealing with treatment can be time-consuming and emotionally draining, but it can also be a time to look at your life in new ways. Maybe you are thinking about how to improve your health over the long term. Some people even begin this process during cancer treatment.

Make healthier choices

Think about your life before you learned you had cancer. Were there things you did that might have made you less healthy? Maybe you drank too much alcohol, or ate more than you needed, or smoked, or didn't exercise very often. Emotionally, maybe you kept your feelings bottled up, or maybe you let stressful situations go on too long.

Now is not the time to feel guilty or to blame yourself. However, you can start making changes today that can have positive effects for the rest of your life. Not only will you feel better but you will also be healthier. What better time than now to take advantage of the motivation you have as a result of going through a life-changing experience like having cancer?

You can start by working on those things that you feel most concerned about. Get help with those that are harder for you. For instance, if you are thinking about quitting smoking and need help, call the American Cancer Society's Quitline^® tobacco cessation program at 1-800-227-2345.

Diet and nutrition

Eating right can be a challenge for anyone, but it can get even tougher during and after cancer treatment. For instance, treatment often may change your sense of taste. Nausea can be a problem. You may lose your appetite for a while and lose weight when you don't want to. On the other hand, some people gain weight even without eating more. This can be frustrating, too.

If you are losing weight or have taste problems during treatment, do the best you can with eating and remember that these problems usually improve over time. You may want to ask your cancer team for a referral to a dietitian, an expert in nutrition who can give you ideas on how to fight some of the side effects of your treatment. You may also find it helps to eat small portions every 2 to 3 hours until you feel better and can go back to a more normal schedule.

One of the best things you can do after treatment is to put healthy eating habits into place. You will be surprised at the long-term benefits of some simple changes, like increasing the variety of healthy foods you eat. Try to eat 5 or more servings of vegetables and fruits each day. Choose whole grain foods instead of white flour and sugars. Try to limit meats that are high in fat. Cut back on processed meats like hot dogs, bologna, and bacon. Get rid of them altogether if you can. If you drink alcohol, limit yourself to 1 or 2 drinks a day at the most. And don't forget to get some type of regular exercise. The combination of a good diet and regular exercise will help you maintain a healthy weight and keep you feeling more energetic.

Rest, fatigue, work, and exercise

Fatigue is a very common symptom in people being treated for cancer. This is often not an ordinary type of tiredness but a “bone-weary” exhaustion that doesn't get better with rest. For some, this fatigue lasts a long time after treatment, and can discourage them from physical activity.

However, exercise can actually help you reduce fatigue. Studies have shown that patients who follow an exercise program tailored to their personal needs feel physically and emotionally improved and can cope better.

If you are ill and need to be on bed rest during treatment, it is normal to expect your fitness, endurance, and muscle strength to decline some. Physical therapy can help you maintain strength and range of motion in your muscles, which can help fight fatigue and the sense of depression that sometimes comes with feeling so tired.

Any program of physical activity should fit your own situation. An older person who has never exercised will not be able to take on the same amount of exercise as a 20-year-old who plays tennis 3 times a week. If you haven't exercised in a few years but can still get around, you may want to think about taking short walks.

Talk with your health care team before starting, and get their opinion about your exercise plans. Then, try to get an exercise buddy so that you're not doing it alone. Having family or friends involved when starting a new exercise program can give you that extra boost of support to keep you going when the push just isn't there.

If you are very tired, though, you will need to balance activity with rest. It is okay to rest when you need to. It is really hard for some people to allow themselves to do that when they are used to working all day or taking care of a household. (For more information about fatigue, please see Fatigue in People with Cancer.)

Exercise can improve your physical and emotional health.

• It improves your cardiovascular (heart and circulation) fitness.
• It strengthens your muscles.
• It reduces fatigue.
• It lowers anxiety and depression.
• It makes you feel generally happier.
• It helps you feel better about yourself.

And long term, we know that exercise plays a role in preventing some cancers. The American Cancer Society, in its guidelines on physical activity for cancer prevention, recommends that adults take part in at least 30 minutes of moderate to vigorous physical activity, above usual activities, on 5 or more days of the week; 45 to 60 minutes of intentional physical activity are preferable. Children and teens are encouraged to try for at least 60 minutes a day of moderate to vigorous physical activity on at least 5 days a week.

How about your emotional health?

Once your treatment ends, you may find yourself overwhelmed by emotions. This happens to a lot of people. You may have been going through so much during treatment that you could only focus on getting through your treatment.

Now you may find that you think about the potential of your own death, or the effect of your cancer on your family, friends, and career. You may also begin to re-evaluate your relationship with your spouse or partner. Unexpected issues may also cause concern -- for instance, as you become healthier and have fewer doctor visits, you will see your health care team less often. That can be a source of anxiety for some.

This is an ideal time to seek out emotional and social support. You need people you can turn to for strength and comfort. Support can come in many forms: family, friends, cancer support groups, church or spiritual groups, online support communities, or individual counselors.

Almost everyone who has been through cancer can benefit from getting some type of support. What's best for you depends on your situation and personality. Some people feel safe in peer-support groups or education groups. Others would rather talk in an informal setting, such as church. Others may feel more at ease talking one-on-one with a trusted friend or counselor. Whatever your source of strength or comfort, make sure you have a place to go with your concerns.

The cancer journey can feel very lonely. It is not necessary or realistic to go it all by yourself. And your friends and family may feel shut out if you decide not include them. Let them in -- and let in anyone else who you feel may help. If you aren't sure who can help, call your American Cancer Society at 1-800-227-2345 and we can put you in touch with an appropriate group or resource.

You can't change the fact that you have had cancer. What you can change is how you live the rest of your life -- making healthy choices and feeling as well as possible, physically and emotionally.

What happens if treatment is no longer working?

If cancer continues to grow after one kind of treatment, or if it returns, it is often possible to try another treatment plan that might still cure the cancer, or at least shrink the tumors enough to help you live longer and feel better. On the other hand, when a person has received several different medical treatments and the cancer has not been cured, over time the cancer tends to become resistant to all treatment. At this time it's important to weigh the possible limited benefit of a new treatment against the possible downsides, including continued doctor visits and treatment side effects.

Everyone has his or her own way of looking at this. Some people may want to focus on remaining comfortable during their limited time left.

This is likely to be the most difficult time in your battle with cancer -- when you have tried everything medically within reason and it's just not working anymore. Although your doctor may offer you new treatment, you need to consider that at some point, continuing treatment is not likely to improve your health or change your prognosis or survival.

If you want to continue treatment to fight your cancer as long as you can, you still need to consider the odds of more treatment having any benefit. In many cases, your doctor can estimate the response rate for the treatment you are considering. Some people are tempted to try more chemotherapy or radiation, for example, even when their doctors say that the odds of benefit are less than 1%. In this situation, you need to think about and understand your reasons for choosing this plan.

No matter what you decide to do, it is important that you be as comfortable as possible. Make sure you are asking for and getting treatment for any symptoms you might have, such as pain. This type of treatment is called "palliative" treatment.

Palliative treatment helps relieve these symptoms, but is not expected to cure the disease; its main purpose is to improve your quality of life. Sometimes, the treatments you get to control your symptoms are similar to the treatments used to treat cancer. For example, radiation therapy might be given to help relieve bone pain from bone metastasis. Or chemotherapy might be given to help shrink a tumor and keep it from causing a bowel obstruction. But this is not the same as receiving treatment to try to cure the cancer.

At some point, you may benefit from hospice care. Most of the time, this is be given at home. Your cancer may be causing symptoms or problems that need attention, and hospice focuses on your comfort. You should know that receiving hospice care doesn't mean you can't have treatment for the problems caused by your cancer or other health conditions. It just means that the focus of your care is on living life as fully as possible and feeling as well as you can at this difficult stage of your cancer.

Remember also that maintaining hope is important. Your hope for a cure may not be as bright, but there is still hope for good times with family and friends -- times that are filled with happiness and meaning. In a way, pausing at this time in your cancer treatment is an opportunity to refocus on the most important things in your life. This is the time to do some things you've always wanted to do and to stop doing the things you no longer want to do.

Last Medical Review: 05/07/2009
Last Revised: 05/07/2009