Fatigue
Memory and Concentration Changes
Pain
Nervous System Changes (Neuropathy)
Lymphedema or Swelling
Mouth or Teeth Problems
Changes in Weight and Eating Habits
Trouble Swallowing
Bladder or Bowel Control Problems
Menopause Symptoms

"If I could stop feeling so tired all the time, I think I'd be fine. I've started getting used to everything else." - Rosa

Some have described survivorship as being "disease-free, but not free of your disease." What you experience with your body may be related to the type of cancer you had and the treatment you received. It's important to remember that no two people are alike, so you may experience changes that are very different from someone else's, even if that person had the same type of cancer and treatment.

You may find that you are still coping with the effects of treatment on your body. It can take time to get over these effects. You may wonder how your body should feel during this time and what are signs that cancer is coming back. This section describes some of the problems that can occur when treatment is over. Some of the most common problems that people report are:

• Fatigue
• Memory and concentration changes
• Pain
• Nervous system changes (neuropathy)
• Lymphedema, or swelling
• Mouth or teeth problems
• Changes in weight and eating habits
• Trouble swallowing
• Bladder or bowel control problems
• Menopause symptoms

Fatigue

Some cancer survivors report that they still feel tired or worn out. In fact, fatigue is one of the most common complaints during the first year of recovery.

Rest or sleep does not cure the type of fatigue that you may have. Doctors do not know its exact causes. The causes of fatigue are different for people who are receiving treatment than they are for those who have finished.

• Fatigue during treatment can be caused by cancer therapy. Other problems can also play a part in fatigue, like anemia (having too few red blood cells) or having a weak immune system. Poor nutrition, not drinking enough liquids, and depression can also be causes. Pain can make fatigue worse.
• Researchers are still learning about what may cause fatigue after treatment.

How long will fatigue last? There is no normal pattern. For some, fatigue gets better over time. Some people, especially those who have had bone marrow transplants, may still feel energy loss years later.

Some people feel very frustrated when fatigue lasts longer than they think it should and when it gets in the way of their normal routine. They may also worry that their friends, family, and coworkers will get upset with them if they continue to show signs of fatigue.

Getting Help

Talk with your doctor or nurse about what may be causing your fatigue and what can be done about it. Ask about:

• How any medicines you are taking or other medical problems you have might affect your energy level
• How you can control your pain, if pain is a problem for you
• Exercise programs that might help, such as walking
• Relaxation exercises
• Changing your diet or drinking more fluids
• Medicines or nutritional supplements that can help
• Specialists who might help you, such as physical therapists, occupational therapists, nutritionists, or mental health care providers

Memory and Concentration Changes

"Not being able to concentrate the way I used to has been the hardest for me. I'm hoping it doesn't affect my work."
- Josh

Research shows that one in four people with cancer reports memory and attention problems after chemotherapy. This is sometimes called "chemobrain." Many survivors describe this as "brain fog," which can lead to problems paying attention, finding the right word, or remembering new things.

These effects can begin soon after treatment ends, or they may not appear until much later. They don't always go away. If a person is older, it can be hard to tell whether these changes in memory and concentration are a result of treatment or of the aging process. Either way, some feel they just can't focus as they once did.

Research is starting to explore why some people develop problems with memory and concentration while others don't. It seems that people who have had chemotherapy or have had radiation to the head area are at higher risk for these problems. People who had high doses of chemotherapy may have memory problems, but even those who had standard doses have reported memory changes.

Getting Help

Your doctor can help you with memory and concentration problems. Talk with him or her if:

• You are still having memory and thinking problems. You may want to ask about seeing a specialist (called a neuropsychologist) to help you with these problems.
• You think a medicine you are taking could be causing or adding to your problem.
• You think you suffer from depression or anxiety. These problems can affect attention, concentration, and memory.
• You are going through menopause. Some memory and concentration problems can be related to menopause.

Pain

Some people have a lot of pain after treatment, while others have less. Everyone is different. Types of pain you may feel after cancer treatment include:

• Pain or numbness in the hands and feet due to injured nerves. Chemotherapy or surgery can damage nerves, which can cause severe pain. For more information on nervous system changes, see Nervous System Changes (Neuropathy).
• Painful scars from surgery.
• Pain in a missing limb or breast. While doctors don't know why this pain occurs, it is real. It's not just "in your mind." This is sometimes called phantom pain.

Getting Help

If you find that you still have pain after treatment ends, your doctor can help find the source of your pain and get relief. You do not have to be in pain. And wanting to control pain is not a sign of weakness. It's a way to help you feel better and stay active. Pain may be caused by treatment or other health issues, such as arthritis.

With your help, your doctor can assess how severe your pain is and may recommend one or more of the following approaches:

• Pain-relief medicines. In most cases, doctors will try the mildest medicines first. Then they will work up to stronger ones if you need them. The key to getting relief is to take all medicines just as your doctor prescribes. To keep pain under control, do not skip doses or wait until you hurt to take these medicines.

  You may be afraid that if you use these medicines you'll become addicted, but this rarely happens if you take the correct dose and see your doctor regularly.

• Antidepressant medicines. Some of these are prescribed to reduce pain or numbness from injured nerves.
• Physical therapy. Going to a physical therapist may help relieve your pain. The therapist may use heat, cold, massage, pressure, and/or exercise to help you feel better.
• Braces. These limit movement of a painful limb or joint.
• Acupuncture. This is a proven method that uses needles at pressure points to reduce pain.
• Hypnosis, meditation, or yoga. Any of these may help your pain. A trained specialist can teach you these approaches.
• Relaxation skills. Many people with cancer have found that practicing deep relaxation helps relieve their pain or reduce their stress.
• Nerve blocks or surgery. If you don't get relief from the other approaches in this section, you may want to ask your doctor about these. Nerve blocks or surgery often help if you have persistent, limiting pain, but they may put you at risk for other problems. They may also require you to stay in the hospital.

Pain Diary

Use this pain diary and pain rating scale to record your pain.
(You may want to photocopy this sheet before writing on it.)

Nervous System Changes (Neuropathy)

Sometimes cancer treatment can cause damage to your nervous system. This is called neuropathy (new-RAH-path-ee), or problems with nerve function. Sometimes these symptoms can be made worse by other conditions, such as diabetes, kidney failure, alcoholism, and malnutrition. Most people first notice symptoms in their hands or feet, usually starting with their fingertips and toes. Sometimes, the tingling and pain move up the fingers to the hands or from the toes to the feet.

Common symptoms include tingling, burning, weakness, or numbness in your hands or feet; sudden, sharp, stabbing, or electric shock pain sensations; loss of sensation of touch; loss of balance or difficulty walking; clumsiness; trouble picking up objects or buttoning clothes; hearing loss; jaw pain; constipation; and being more - or less - sensitive to heat and cold.

Symptoms can start when you begin chemotherapy or after treatment. If they do, tell your health care team right away. Symptoms can improve over time, but it may take up to a year or more.

Getting Help

• Treatments include medications, topical creams, and pain patches.
• Other approaches include acupuncture, physical therapy, and exercise.

Lymphedema or Swelling

Lymphedema (LIMF-eh-DEE-ma) is a swelling of a part of the body caused by the buildup of lymph fluids. It often happens in the arm, leg, face, or neck. It can be caused by cancer or its treatment. There are many different types of lymphedema. Some types happen right after surgery, are mild, and don't last long. Other types can occur months or years after cancer treatment and can be quite painful. These types can also develop after an insect bite, minor injury, or burn.

People who are at risk for lymphedema are those who have had:

• Breast cancer. If you had radiation therapy, or had your underarm lymph nodes removed, or had radiation in the underarm area after your lymph nodes were removed
• Melanoma of the arms or legs. If you had lymph nodes removed and/or had radiation therapy
• Prostate cancer. If you had surgery or radiation therapy to the whole pelvis
• Cancer of the female or male reproductive organs. If you had surgery to remove lymph nodes or had radiation therapy
• Other cancers that have spread to the lower abdominal area. The pressure from the growing tumor can make it hard for your body to drain fluid.

Getting Help

Your doctor or nurse may be able to help you find ways to prevent and relieve lymphedema. Ask about:

• Skin care. It's important to keep your skin clean. You should also use lotion to keep it moist.
• Exercise. Find out about exercises to help the body drain lymph fluid and what types of exercise you should not do.
• Ways to treat lymphedema. Your doctor may suggest:
  • Keeping the arm or leg raised above your chest for periods of time
  • Having special types of massage that can help by moving the lymph fluid from where it has settled
  • Wearing special elastic sleeves and clothing that can help lymph fluid drain
  • Losing weight
  • Finding sources of emotional support to help you cope
  • Avoiding procedures done in the area with lymphedema, such as shots or blood tests

Mouth or Teeth Problems

Many people who have been treated for cancer develop problems with their mouth or teeth. Some problems go away after treatment. Others last a long time, while some may never go away. Some problems may develop months or years after your treatment has ended.

Radiation or surgery to the head and neck can cause problems with your teeth and gums; the soft, moist lining of your mouth; glands that make saliva (spit); and jawbones. If you were treated with certain types of chemotherapy, you may also have these problems. This can cause:

• Dry mouth
• Cavities and other kinds of tooth problems
• Loss of or change in sense of taste
• Painful mouth and gums
• Infections in your mouth
• Jaw stiffness or jawbone changes

Who Has These Problems?

• Almost all people who have had radiation therapy to the head and neck
• Most people who have had bone marrow transplants
• About two out of every five people treated with chemotherapy

Getting Help

If you find that problems persist after cancer treatment ends, talk with your doctor about possible causes and ways to control mouth pain.

Try to see your dentist soon after you are done with treatment. Ask how often you should have checkups and ways to take care of your mouth and teeth.

Changes in Weight and Eating Habits

Some survivors who have had certain kinds of chemotherapy or medicines have problems with weight gain. Sometimes the added pounds stay on even when treatment ends. Breast cancer survivors who have had certain types of chemotherapy gain weight in a different way - they may lose muscle and gain fat tissue.

Unfortunately, the usual ways people try to lose weight may not work for them. Try to be patient with yourself. Look for the positive things that you can control, such as eating a healthy diet. Try to focus on the fact that treatment is over, and you are trying to get stronger with time.

Some cancer survivors have the opposite problem: they have no desire to eat, and they lose weight. Some men say that weight loss or loss of muscle tone is a bigger concern for them than weight gain. It makes them feel less strong and like less of a man.

Managing a Healthy Weight

For weight issues, ask your doctor or nurse about:

• Doing strength-building exercises, if you have lost muscle or gained fat tissue
• Talking to a dietitian or nutritionist who can help you plan a healthy diet that won't add extra pounds

Trouble Swallowing

Some people who have had radiation therapy or chemotherapy may find it hard to eat because they have trouble swallowing. People who have had radiation therapy to the head, neck, breast, or chest or those who have had surgery involving the larynx may also have this problem.

Getting Help

• Eat soft, bland foods moistened with sauces or gravies. Puddings, ice cream, soups, applesauce, and bananas and other soft fruits are nourishing and usually easy to swallow.
• Use a blender to process solid foods.
• Ask for advice from your health care team, including your doctor, nurse, nutritionist, and/or speech pathologist.
• Tilt your head back or move it forward while you are eating.
• Have a sip of water every few minutes to help you swallow and talk more easily. Carry a water bottle with you so you always have some handy.

Bladder or Bowel Control Problems

Bladder and bowel problems are among the most upsetting issues people face after cancer treatment. People often feel ashamed or fearful to go out in public. "Going back to work was the hardest thing," one prostate cancer survivor noted.

This loss of control can happen after treatment for bladder, prostate, colon, rectal, ovarian, or other cancers. Your surgery may have left you with no bladder or bowel control at all. Or perhaps you still have some control, but you make lots of sudden trips to the bathroom. The opposite problem can happen when a medicine you are taking for pain causes constipation.

Getting Help

It is very important to tell your doctor about any changes in your bladder or bowel habits. Ask your doctor or nurse about:

• Problems with constipation
• Kegel exercises (see Changes in Sex Life on muscle weakness)
• Medicines that may help
• Help in coping with ostomies. If you have an ostomy, an opening from inside the body to the outside to pass urine or waste material, there are services and support groups to help you cope with changes (see Services to Think About).

Menopause Symptoms

After chemotherapy, some women stop getting their periods every month - or stop getting them altogether. Some cancer treatments (and the medicines tamoxifen and raloxifene) can cause changes in women's bodies and reduce the amount of hormones they make. These changes can cause your periods to stop, as well as cause other symptoms of menopause (also called "the change" or "change of life").

Over time, some women will start getting their periods again (this is more likely for younger women), but others will not. Even though your doctor may have discussed early menopause with you, give yourself permission to mourn the loss of your fertility.

Some common signs of menopause are:

• Irregular periods. One of the first signs is a change in your periods. They may become less regular. They could be lighter. Some women have short times of heavy bleeding. Sometimes, they stop all of a sudden.
• Hot flashes. Hot flashes are often worse at night and can affect sleep or cause mood changes.
• Problems with your vagina or bladder. Tissues in these areas become drier and thinner. You may be more likely to get vaginal infections. As you get older, you may also have problems holding your urine or urinary tract problems.
• Lack of interest in having sex. These changes may make it hard for you to become sexually aroused.
• Fatigue and sleep problems. You may feel tired or have trouble getting to sleep, getting up early, or getting back to sleep after waking up in the middle of the night.
• Memory and other problems, such as depression, mood swings, and irritability. Some of these, especially memory problems, may be related to growing older. There may be a connection between changes in your hormone levels and your emotions.
• Other changes in your body. You may notice your waist getting bigger, less muscle and more fat around your body, or thinning and loss of elasticity of your skin.

Getting Help

See a gynecologist every year. Ask about:

• Medicines, supplements, or other approaches that can help you manage menopause symptoms
• Tests you should have (such as a bone density test to see if you are at risk for osteoporosis)
• Ways you can reduce your chance of getting:
  • Osteoporosis. Menopause can put you at risk for losing bone tissue, which can weaken your bones and make them easier to break.
  • Heart disease. Menopause can also lead to higher cholesterol, which can increase your risk of diseases that affect your heart and blood vessels.

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