Cancer

YOUR CANCER YOUR LIFE – RIGHT TO INFORMATION

You may initially feel very apprehensive about insisting on this. Let me tell you from my experience with many patients that your imagination will usually paint a far gloomier picture than the truth. It is much easier to grapple with facts than with the unknown. It is impossible to make good decisions in a black cloud of ignorance. These are very good reasons for insisting on the facts.

I know that some of you will be seeking information, advice and treatment from people other than medical-school trained doctors. I wish to make it clear that my training was as a medical doctor. I worked in a large teaching hospital. This is where my experience lies and it is what I understand best. Because of this, you will find that all the detailed explanations in this book concern the methods of diagnosis, assessment and treatment used by medical practitioners. In these sections I will use the word doctor to mean medical-school trained doctors. Some sections of this book, including all of this chapter, apply whether or not the cancer ‘expert’ you are consulting is a doctor. In these sections I will use the word ‘practitioner’ to mean whoever is looking after you, whatever their training.

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AFTER CANCER: AFTEREFFECTS INVOLVING THE HEAD AND NECK

What If My Eyes, Nose, and Mouth Are Dry?

Dryness can be due to

• radiation- or chemo-induced changes in the glands that supply moisture to these areas

• medication effect

•an immune disorder that damages or destroys the glands that supply moisture to these areas

What If It Is Hard to Swallow?

Difficulty in swallowing after cancer treatment can be due to

• dry mouth

• injury to the nervous control of swallowing •radiation changes to the mouth, throat, and/or esophagus

• infection in the esophagus

Short-term radiation changes will usually resolve within a few weeks to months of completing therapy. Permanent scarring of the esophagus can occur months to years following radiation to the chest (mediastinum). This delayed scarring can cause narrowing, called stricture, of the esophagus, which is treated with dilations by a gastroenterologist (a doctor specializing in diseases of digestion).

Infections (viral, fungal) are usually quite painful and require treatment aimed at eradicating the infection.

Can Cancer Treatment Cause Cataracts?

Cataracts are common in otherwise healthy people over sixty-five years old. They can occur earlier and more frequently following

• radiation to the eye

•long-term exposure to steroids (corticosteroids, or cortisone-type drugs, such as prednisone)

Why Does Food Sometimes Taste Different after Cancer Treatment?

Treatment of head and neck cancers can result in temporary or permanent alteration in taste due to

• changes in the tongue

• diminished or absent smell sensation

• diminished saliva

• effect of medication

What Is Osteoradionecrosis of the jaw?

This is a serious complication of radiation to the jaw and is due to bone infection. High-dose radiation to the jaw causes permanent changes that render the bone unable to respond normally to infection in the gums or teeth. This problem has become uncommon as techniques of delivering radiation have improved and attention has been given to proper care of teeth. You can prevent this complication by

• getting frequent (every three to four months) high-quality dental care

• brushing properly and flossing regularly

•seeing your dentist at the first sign of swelling of the gums or the first hint of pain in your gums or a tooth

What Are Radiation Caries?

This is an aggressive form of dental caries (cavities in the teeth) that occurs after radiation to the head and neck. Because it is usually painless, it can, if not picked up by frequent dental exams, progress to such a point that the teeth cannot be salvaged. It is caused by changes in the quality of the saliva, as well as by decreased quantities of saliva.

How Can I Prevent Radiation Caries?

You can help prevent radiation caries by

• having frequent dental exams

• practicing meticulous oral hygiene (brushing and flossing) •applying topical fluoride every day

• eating a healthy diet

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AFTER CANCER: POSTCANCER FATIGUE (PCF)

The oncology literature acknowledges the existence of a characteristic fatigue that occurs following treatment when remission is achieved. It is not explained completely by detectable abnormalities and persists despite the evaluation and correction of all identifiable causes of fatigue. Anyone involved in the care of cancer survivors knows that fatigue is universal during and immediately following aggressive treatment and is difficult to understand, explain, or fix. Patients who experience postcancer fatigue describe it as different from any fatigue they ever experienced under healthy circumstances; they often describe it as feeling similar to infectious mononucleosis.

Postcancer fatigue is a symptom that

• is due to the effects of prior cancer and/or cancer treatment •persists after all other known physical causes of fatigue have been ruled out or corrected

• persists after any depression, anxiety, or other emotional problem has been ruled out or resolved

•persists despite good-quality sleep, good nutrition, and abstinence from medicines that cause fatigue or sleepiness

• hinders the performance of activities of daily living (ADLs)

Postcancer fatigue affects daily life and requires significant adjustments in habits and schedules. If severe, it may prevent you from performing desired activities. Before your illness, when you felt wiped out, one or two good nights of sleep probably recharged your batteries and made you feel refreshed. With postcancer fatigue you may at times feel exhausted even after doing all the things that used to make you feel refreshed.

Before your illness you experienced a predictable pattern of progressive exhaustion after becoming sleep-deprived: you felt okay when you first got up, or after a cup or two of coffee, and then gradually got sleepy by late morning or early afternoon. Similarly, individuals with postcancer fatigue learn that their fatigue is worse under certain circumstances (before or after meals, before or after exercise, during and following family conflicts, before checkups, and so on) and that it worsens gradually. Diverse circumstances may exacerbate postcancer fatigue in different people.

Although some circumstances predictably make you feel worse, the pattern with postcancer fatigue is often variable, with days or weeks of more energy followed by days or weeks of extreme fatigue. In addition, people with this symptom often report episodic bouts of fatigue: they feel pretty good for a while, and then suddenly, while reading a book or working on a report, they are unexpectedly overwhelmed with debilitating fatigue. They may feel fine until halfway through lunch—and all at once become too tired to finish eating.

“Postcancer fatigue” is a term that can be applied only after all treatable causes of fatigue have been ruled out by your oncologist or internist, or have been corrected.

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AFTER CANCER: HOW CAN I DEAL WITH OTHER PEOPLE’S CANCER DEATH?

To grieve when you have to deal with another’s death is normal. This has not changed just because you, too, had cancer. Preparing for someone’s death or understanding the source of your feelings will not keep you from having feelings when the person dies. You must allow yourself to go through the grieving process, even if it means touching on some feelings that are discomfiting. Unthinking, unfeeling people are protected from the pain of grief. Accept your feelings as a sign of your personal depth and your connection with the world.

Talk about the person and your feelings. Allow yourself to cry, feel mellow, or be distracted and inefficient for a while. Remember that some of your emotions may seem a little bit out of proportion, because the news may have stirred up emotions about issues that are closer to you. The loss of a casual friend from cancer can awaken major grief over other losses, as well as your own fears.

Remind yourself that death is not defeat. Death is a normal, natural, unavoidable, expected part of life. Living the life you have is a victory. Someone can die with chemotherapy dripping, fighting cancer to the last breath, while someone else dies peacefully at home after accepting that the time to die has come. The act of choosing how to live your life is a triumph, no matter what the outcome.

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AFTER CANCER: FEELINGS. HOW AM I SUPPOSED TO FEEL AS I COMPLETE MY THERAPY?

The completion of therapy is usually accompanied by many different, seemingly contradictory, feelings. You may feel any combination of relief, anxiety, confusion, a sense of unreality, fear, anger, and depression. Your feelings may be mild or intense, exhilarating or frightening. They may fluctuate from day to day, even hour to hour. Take comfort in knowing that you will not always feel this way. These emotions will smooth out. Your life and emotions will seem more normal with time.

What you feel is less important than what you do with these feelings. When you have intense emotions, share them with someone you trust. Somehow, after an empathetic friend, relative, or counselor listens, you will feel better, even if you do not find any new answers. You do not move your refrigerator very often, but when you do, you would not think of moving it yourself. Completing cancer treatment is an exceptional circumstance. Why should you try to manage the emotions yourself?

If you feel like crying, find a safe place and cry until you do not feel the need any more. If you feel angry, find a safe place to vent your anger, or engage in an activity such as exercise or writing that will release some of the pent-up energy.

Try writing down your thoughts and feelings. Keeping a diary will provide a safe outlet for all your emotions and help you sort out some of your thoughts and feelings. Writing can be therapeutic, even if you throw away everything you write.

Most of your intense thoughts and feelings will fade as you move farther away from your recent experiences with cancer. If you capture them now, you will be able to remember what was happening at this time of your life. Your diary will allow you to look back and see how far you have come. Other forms of writing, such as letters and poems, provide the added dimension of being able to share with others.

There are times when the best way to handle a rough day is to go to bed early and start again tomorrow. Rest and escape are sometimes better than all the talking, analyzing, hugging, or exercising in the world. Obviously, going to bed does not change anything or solve problems. It just allows you to settle down, recharge your batteries, and start over.

What feelings you experience is less important than what you do with these feelings.

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AFTER CANCER: DO I NEED ANY VACCINATIONS?

Vaccinations are given to help prevent specific diseases. They come in many different types. Some are routinely given to almost everyone, such as the tetanus vaccine. Others are given only to people with special medical conditions, such as the pneumonia vaccine. Still others are given to anyone with an increased risk of being exposed to the disease, such as yellow fever vaccination before travel to high-risk areas, or hepatitis vaccine before the start of work with high occupational exposure.

Discuss with your primary care giver whether you need any vaccinations now or in the foreseeable future and whether there are any vaccines that you should avoid. Vaccinations in adults are given when the benefit outweighs the risk, such as when there is an increased risk of getting infected or an increased risk of complications from the infection. In general, adults who are at increased risk of infections and who may benefit from certain vaccinations, such as the flu vaccine or pneumonia vaccine, include those who

• are over sixty-five years old

• have significant heart, lung, or kidney problems

• have certain cancers

• are on certain medications

• have had their spleen removed

•know that they are going to be exposed to a preventable infection

Vaccinations are given in hopes of building up your body’s immunity to specific infections before you are exposed to the infection. Exposure to the infectious agent after your immunity is boosted usually results in a milder illness or none at all. Vaccination does not guarantee protection, because many factors determine whether the vaccine works in you.

Vaccines containing live virus can be dangerous in certain patients. Be sure to discuss your cancer treatment with any doctor who recommends that you receive a vaccine, and discuss any plans for vaccination with your oncologist.

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