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Copyright © 1998 by Pritchett & Hull Associates, Inc. All rights reserved. No part of this book may be photocopied, reprinted or otherwise reproduced without written permission from Pritchett & Hull Associates, Inc.
This book is only to help you learn, and should not be used to replace any of your doctor’s advice or treatment. Published and distributed by: Pritchett & Hull Associates, Inc. Printed in the U.S.A.
i
ntroduction
You have just been told you have cancer. You were sitting in your doctor’s office, but you might as well have been somewhere else. You know you should have been listening to what the doctor was saying, but your mind was a blank. That’s natural because of all the scary things you’ve grown up hearing about cancer. Cancer was once considered a death sentence. It was so frightening, people didn’t dare say the word. But cancer is no longer like that. People survive it, get well and lead long and active lives. This book contains basic information about cancer to help you and your family understand more about your illness. It reviews treatments, side effects, exercise, diet, coping and some common questions and answers. It also gives you a list of cancer terms you may hear when treatment is discussed. If you still have questions after reading this book, ask your doctor or nurse. On the inside back cover, you will find a list of resources that can also give you more information.
1
A
word about cancer cancer The word cancer is used to describe over 100 different diseases. What all of these diseases have in common is the uncontrolled growth of abnormal cells. Normal healthy cells grow in an orderly fashion. Cancer (malignant) cells grow fast and without order. As this process goes on, the cancer cells begin to invade nearby tissues and organs. Cancer cells sometimes move from their first (primary) site and may begin to spread to other parts of the body. This process is called metastasis. The doctor diagnoses the kind of cancer based on what the cell looks like and where it’s located in the body.
normal cells
2
cancer cells
Cancer develops over time. It is the result of a mix of things related to your lifestyle, environment, heredity and other unknown factors. Studies have found links between cancer and factors such as high-fat foods, pesticides, sun exposure, X rays, tobacco use and other things in the environment. Things that can cause cancer are called carcinogens. Why some people get cancer and others do not is not known. But you can’t “catch� it from someone like you can a cold or the flu. Cancer can happen to anyone. Some cancers, like colon, prostate and breast cancer, seem to run in families. Those people with close relatives who have had any of these types of cancer need to have regular checkups. They may also want to ask about genetic counseling.
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g
etting used to the idea
Though you may be scared to learn more about your cancer, knowing the treatment risks, side effects and outcomes ahead of time may help to relieve your concerns or fears. To find out more about cancer, you can read booklets, watch videos, go on-line or call resource centers.
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Knowing what to expect each time you go to the doctor’s office or hospital may help decrease some of your stress. Ask your doctor or nurse anything you want to know about your illness or treatment. Be open with your doctor. Talk about how you feel, and describe any symptoms or discomfort. Take your written list of questions with you to the doctor, and write down the answers so you can share them with your family. You may want to take a family member or friend with you to help you take notes.
Some of the types of questions you may want to ask are: • W hat treatments are available for my kind of cancer? What are the advantages and disadvantages of each type of treatment? What are the side effects? Which treatment is most likely to be effective against my type of cancer? • H ow often will I need to come in for my treatments? • What will the treatment do for me? • How often will blood work and other tests be done? • I s there anything that can be done so I don’t have to be “stuck” for lab work all the time? • C an I keep working and carry on with my daily routine? • W hat exactly can I expect each time I come in? • Will my insurance cover all of my costs? • Should I get a second opinion? • What kind of outcome can I expect?
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t
reatment
Treatment is often done by a team of specialists. They may include: • an oncologist (specialist in cancer treatment) • a surgeon • a radiation oncologist (specialist in radiation therapy) The choice of treatment is based on: • the kind of cancer and where it is • whether the cancer has spread • your medical history • a ny medical problems you have now • your general health • your age You may want to take an active part in the decisions about your medical care. To do this you need to learn as much as you can about your type of cancer and the treatment choices.
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Ways to treat cancer include: surgery chemotherapy (chemo) radiation therapy hormone therapy immunotherapy (biological therapy) Your doctor may use one or more of these treatments. Talk to your doctor about them. Let him or her know your fears or concerns. Also tell your doctor about any alternative treatments you may be thinking about.
surgery Surgery involves removing the cancer (also called malignant tumor, lesion, mass, growth) and tissue that has been affected by it. The surgeon will take samples (biopsies) of the tumor and nearby tissue and lymph nodes to see if the area nearby is free of cancer. After surgery, you will have some pain at the incision site and feel tired or weak.
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chemotherapy In this treatment, drugs are given to kill cancer cells and help keep the fast growing cancer cells from multiplying. Some of these drugs are given by mouth. Others are given as an injection in the muscle or vein. Like all cells, cancer cells grow in stages. Different types of chemo work by attacking certain stages of the cancer cell as it is growing. Treatments can be given in your doctor’s office, in the hospital or in an outpatient center. No matter where you get your treatment, the side effects and results of treatment will be closely watched. Some of these drugs can affect other organs in your body (such as the liver, heart or kidneys). Your doctor will closely monitor these organs.
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Liquid Meds
In this treatment, special high energy rays (X rays) are used to damage and destroy the cancer cells. Radiation therapy is used to treat a certain area or tumor.
external (outside the body) This is the most common way of giving radiation therapy. It is most often done Monday through Friday for several weeks. A machine aims the X rays at the site of the cancer. The X rays either destroy the cancer or shrink it enough so that it can be removed by surgery or treated with chemo. X rays may also be used after surgery and/or chemo to shrink remaining cancer cells.
路
skin external radiation
cancer cell
9
internal (inside the body) This treatment is most often done in the hospital. It involves putting a radioactive implant (which gives off x-ray energy) inside the site where the cancer is growing. (This type of radiation works close to the cancer.) The implant may be temporary or permanent. Radiation is highest while you are in the hospital, so you may not be able to have visitors. If you do, they can only stay a short time. If the implant is removed, there is no longer any radioactivity in the body. If the implant is left in, the radiation is at a safe level by the time you go home.
implant cancer site
10
Both types of radiation therapy can have side effects such as redness and rashes on the skin (p. 20), tiredness (p. 18), loss of appetite and hair loss at the treatment site (p. 14).
internal radiation
hormone therapy Some types of hormones stimulate the growth of cancer cells. This treatment uses drugs to keep the cancer cells from getting or using the hormones that make them grow. Breast, prostate, uterine and thyroid cancer are examples of the types of cancer treated with hormone therapy. Sometimes the hormone that helps the cancer grow is produced by an organ in the body. That organ may need to be removed. Any side effects depend on the type of drug used. Some of the more common side effects are nausea, weight gain, swelling or hot flashes.
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immunotherapy (biological The body’s immune system—its natural ability to fight disease—is one of its best defenses against cancer. In this treatment, substances are used to boost your immune system to help it fight the cancer. Melanoma and prostate cancer may be treated with biological therapy. The side effects depend on the type of treatment.
Most common are flu-like symptoms such as chills, fever, muscle aches, loss of appetite, weakness, nausea, vomiting and diarrhea. Some people will get a rash, bleed or bruise easily, or have swelling. These side effects will slowly go away after treatment stops. If the side effects are severe, you may have to stay in the hospital during treatment
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c
ommon side effects Side effects from any of the cancer treatments occur because:
• the treatment must be strong enough to make sure that the cancer is destroyed • normal cells as well as cancer cells may be damaged Learning about the side effects and how to deal with them will help you get through the treatment. As you read about the side effects on the following pages, keep in mind that every person does not have every side effect. Some people have only a few or none at all. And some people have more severe side effects than others.
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hair loss Like cancer cells, the cells that make hair are fast growing, so they are often affected by cancer treatments. You may lose none, some or all of your body, scalp and facial hair. How much hair (if any) you lose depends on the type of treatment you have. Hair loss most often happens a short time after treatment begins. This is very hard for some people to deal with. For others it’s a time to try a new look.
You may find yourself feeling angry or depressed about losing your hair. Keep in mind that it will grow back about 6 to 8 weeks after your treatment is over. Don’t be surprised if your hair grows back curlier or a different shade or color.
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When you look good, you often feel better. Some ways to handle hair loss are: • Wear a cap, scarf, turban or other head cover. • B uy a wig, and have it cut and styled like your own hair. Have it ready before your treatment begins and you lose your hair. (The purchase of a wig for cancer treatment may be covered by your insurance.) • U se make-up to look your best while you are going through treatment. There are programs that can help you learn to be creative with your make-up.
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nausea and vomiting Nausea and vomiting happen during some cancer treatments. When you have these side effects, it means treatment is affecting the stomach and intestine lining and the part of the brain that controls vomiting. Vomiting should be treated so that you don’t lose too much body fluid. There are drugs available that control nausea and vomiting most of the time. If you have a lot of vomiting, you may be given IV antinausea drugs and IV fluids to replace fluids you lose. Here are some things you can try at home to help control nausea and vomiting: • T ake antinausea medicine (antiemetic) before, during and after your treatment as you need it. Don’t wait until you are vomiting to take the medicine. (This medicine may make you sleepy.) • E at a lot of small meals throughout the day instead of 2 or 3 big meals which may make you “too full.”
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Note: If you have any problems with your medicine tell your doctor.
• T o keep your stomach from getting too full, don’t drink a lot of fluids with meals. (Do drink fluids between meals. This may help curb the nausea.) • C hew your food well and eat slowly to avoid filling your stomach too full. • E at foods that help soothe the stomach — like dry toast, crackers and clear soups. • D rink cool, clear liquids that are not carbonated. (Carbonated drinks increase gas in the stomach.) Try things like flat colas and ginger ale, Popsicles® and white grape juice. • D on’t eat fried, spicy or sweet foods. These tend to upset the stomach. • P repare food ahead of mealtime to avoid cooking odors when it’s time to eat.
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fatigue Dealing with a diagnosis of cancer, treatments, side effects and other concerns can be very stressful to your body. During treatment, your body uses lots of energy to heal itself. It is common to feel tired during and after treatment. It may take a while, but these feelings should go away after your treatment is complete. Here are some tips for dealing with fatigue: • S ave your energy for the things that you enjoy and mean the most to you. • D on’t overdo. As you begin to feel tired, stop and rest. • T ry to get 10 to 12 hours of sleep each night. • I f you are working, try to cut your hours down or rest often during the workday. • S chedule treatments, appointments and other activities to avoid doing too much at one time. • L et family or friends help with chores, shopping and driving. Make a list of chores for them to choose from. • P lan your day to allow times to rest and relax. • Avoid crowds.
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mouth sores (stomatitis) Because cells in the mouth are also fast growing, they are an easy target for irritation by the chemo. Your mouth may become red, dry and sore. You may also notice a change in the way food tastes or lose your sense of taste for a time. To help with these problems, drink lots of liquids; chew crushed ice or gum; and eat soft, cool, moist foods. Don’t eat salty or spicy foods or acidic foods like tomatoes and oranges. Also, don’t smoke or chew tobacco which irritates the mouth even more.
Good mouth care is important even before problems start. Brush your teeth after each meal with a soft toothbrush. Don’t use regular mouthwash. It has alcohol in it that dries the mouth and can be painful if you have sores or blisters. Your doctor will most likely prescribe a special mouthwash that cleans and soothes the pain of sores or blisters in your mouth.
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skin problems Your skin may become red or appear “sunburned” or irritated during radiation treatment. Gently wash these places with warm water, and pat dry. Your doctor may prescribe a special lotion to help ease itching or discomfort.
use powders, creams, perfumes or deodorants unless your doctor says it’s OK.
Do not
You will also need to stay out of the sun as much as you can during your treatment. Exposure to the sun can cause skin damage to an area that has had radiation treatment. (The treated area will be more sensitive to the sun.) Also, the skin at the treated site may become darker than the rest of your skin. Your fingernails may become very thin and brittle. Keep them trimmed short to avoid breaking off into the quick.
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blood problems Treatment for cancer can affect tissue inside your bones called bone marrow. The cells that make up blood are made in your bone marrow. These cells include red blood cells, white blood cells and platelets. Red blood cells carry oxygen to all parts of your body. When there are not enough red blood cells, you become anemic. This makes you feel tired, listless or short of breath. Your doctor may check your blood on each visit to see if you have become anemic. If you have, you will need to get plenty of rest, avoid too much activity and eat things with a lot of iron. (Iron helps the red blood cells carry oxygen.) Some good sources of iron are green, leafy vegetables and beef. If your blood count should get too low, you may need a blood transfusion.
normal
anemic
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White blood cells fight infection. If you don’t have enough white blood cells or if the cells are not fully grown, your body can’t fight off infections very well. Your doctor will check your white count before each treatment to make sure it is not too low. If it is, the treatment may be postponed or the amount of drugs given may be decreased. If the white blood count gets very low, you may be given medicine to help you produce more white blood cells. If you have a fever of 101°F or more, call your doctor right away. You may need an antibiotic (a drug given to treat infection).
ways to avoid infection • W ash your hands often, especially before eating. • S tay away from undercooked foods, fresh fruits and vegetables, flowers and plants. Undercooked foods and plants still have a lot of germs (bacteria) on them that could make you sick.
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• S tay out of the garden. Soil can contain fungus, mold, spores and bacteria. • A void crowds, and stay away from anyone who is sick. You may need to wear a mask on trips to the doctor’s office or hospital. • T ake care of your skin, mouth and body by eating as well as you can and bathing each day. • T ake special care of any cuts or bruises you get. When your white count is low, small cuts can become infected easily. • Avoid contact with pets (scratches, bites, etc.). • B e careful when trimming nails to avoid cuts. Avoid professional manicures and fake nails to reduce risk of a fungus infection.
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Platelets are the blood cells that help stop bleeding by making your blood clot. Platelets are made by your bone marrow. Some cancer drugs can cause a decrease in the number of platelets that are made. If you don’t have enough platelets, you bruise and bleed easily. If your platelet count gets too low, you may need a transfusion of platelets. Be sure to tell your doctor or nurse if you have any bruises, nose bleeds or bleeding when you go to the bathroom. Your doctor will check your platelet count often while you are in treatment.
Platelet
Platelet
Platelet Platelet Platelet
Platelet Platelet Platelet
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Platelet
Platelet
things to avoid if your platelet count is low • a spirin, ibuprofen, naproxen These drugs will “thin” your blood making it harder to clot. Check all over the counter medicine labels for these. • c onstipation Use a stool softener, especially if you have hemorrhoids. • b leeding gums Gently use a foam swab instead of a toothbrush. • c uts or burns Try an electric razor. Be extra careful in the kitchen around knives and hot things that could scald or burn you. • f alls Don’t do activities that could cause you to fall and hurt yourself (sports, exercise, getting up too fast, wearing socks without shoes, etc.).
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sexual concerns Cancer treatment can mentally affect sexual activity. During treatment, your stress level and feelings (depression, not feeling very attractive, etc.) can lower your desire to have sex. And you may simply feel too tired. Set aside time to spend with your partner, and work to keep your life as normal as you can. Share your feelings with your partner, because one or both of you may have some fear of rejection. If you and your partner understand the changes and learn how to handle your feelings, you may even become closer to each other in the process. If there are things that you or your partner are unsure about, ask your doctor or nurse. Don’t be afraid to ask any questions you have about sexual concerns.
Good news! Normal sexual activity can return after treatment.
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Some types of chemo may cause infertility (unable to father a child or get pregnant.) If this is a concern for you, speak to your doctor before or early in treatment. Using birth control during treatment is strongly advised because radiation and chemo may cause birth defects.
for women Some types of chemo may physically affect your desire for sex. The vagina may become very dry or have a burning feeling during sex. A vaginal lubricant (like Replens速) can help with this. Vaginal itching is also common.
for men Chemo may lower the number of sperm cells and the way they move. Although this may affect your ability to father a child, it does not affect your ability to have sex with your partner.
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E
at well & exercise during treatment Staying as healthy as you can will help you cope with the side effects of cancer treatments. Follow a well-balanced diet with enough calories and plenty of protein. This will help keep your weight and energy level up. A good diet also helps your body heal and fight off infection. The body uses protein to build up and repair itself when there is damage or disease. Foods high in protein include: meats, cheese, eggs, beans and nuts. Milk and other dairy products have protein, as well as calcium that builds strong bones and teeth. Grains like bread and cereals and potatoes are good to help give you energy. Fruits and vegetables have vitamins and minerals that the body must have to stay healthy. You need to eat foods from all of these groups. If you need help with planning a well-balanced diet, ask your doctor to refer you to a registered dietitian.
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Some of the side effects of treatment make it hard to take in enough calories to stay healthy. These tips can help: • Eat small meals or snacks often and throughout the day. • For extra calories add butter, sugar, cheese, yogurt, peanut butter, cream and gravy to foods. • If the odor bothers you, have someone else do the cooking. • Eating foods at room temperature may help decrease nausea. • Try nutritional supplements (like Ensure®). These have high levels of protein and calories to help maintain your weight and energy. Exercise may be hard to do if you are tired. But you need to do as much as you can. A walk around the block may do wonders for your stress level. Though exercise is important, take care not to overdo it. Ask your doctor to suggest what type and how much exercise is best for you.
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C
oping
Living with cancer is hard on you, your family and your friends. Your feelings may range from anger and denial to hope and courage. You need to talk about all of these feelings with your family and friends. Some people may be afraid to talk with you about your cancer for fear that it will upset you. You may need to make the first move to let them know it’s OK to talk about it. Some people may tell you about someone they know who has cancer. The stories may be good or bad. Keep in mind that everyone’s cancer is different. What you hear about someone else may or may not apply to you. Also, keeping a diary may help you to better cope with your illness. Try to set small goals, as well as some long-term ones to give yourself something to focus on each day. Look to support groups in your area for a chance to talk with other people who know just what you’re going through.
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C
ommon questions and answers what do I do if. .
. . . I begin to have pain or discomfort? If you are having pain from your disease or treatment, contact your doctor about getting pain medicine. If you are not able to swallow or keep pills down, talk with your doctor about other options. Your pain can be controlled.
. . . I think I might be coming down with something? Treatment for cancer may make you feel like you have a bad case of the flu. You need to call your doctor if you have any of these symptoms: fever (temp of 101°F or more), chills, nausea and vomiting that prevent you from keeping anything down, unusual bleeding, changes in breathing, or any symptom you feel uneasy about. Dr.’s phone #:
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. . . I want to make out a will or advance medical directive? It’s a good idea for everyone to have a will, whether they have cancer or not. A lawyer can help you make out a will. Or you can find guides in most libraries or software bookstores on how to make out your own legal will. If you can, try to involve your spouse, partner or family in this process. Also, ask your doctor about advance medical directives. These are written instructions about your wishes for treatment in the event you can’t speak for yourself. Your health team or support group can also help you with these forms.
. . . I have to quit work and could lose my insurance? Ask your doctor if you can keep working, even if only part-time. Talk with your employer about your job, benefits and future. Short or long-term disability may be an option since most of the time treatment is short-term. If you need to quit your job, make an appointment with a social worker either at the hospital or in your community. He or she can help you with information about insurance, government aid, hospital bills and organizations that help people with cancer.
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. . . I have a pet? While you are having cancer treatment, it is important that you are careful to avoid infections. If you have a playful pet, you need to be sure you don’t get scratched, bitten or bruised. Other than this, having a pet is not a problem.
. . . people ask about my cancer, and I don’t know what to tell them? You don’t have to talk about your disease unless you want to. Most people who mention the subject of cancer are concerned about you. If you don’t want to talk about it, just thank them for their concern. If you do want to talk about it, go ahead. Talking will most likely help you cope with some of the stress of having cancer by getting some of your thoughts “off your chest.” If you find it too stressful to talk with family or friends, try to find a support group in your area. That way you can meet with people who are going through the same thing.
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. . . I really need more information about living with cancer? At the end of this book is a list of organizations that can answer many of your questions and concerns. Most of these groups have free pamphlets they will send you on a number of subjects. For answers to some of your questions right now, call the Cancer Information Service at 1-800-4-CANCER. Your local library and bookstore also have books and guides on living with cancer. Also, ask your hospital cancer team about on-line computer access.
. . . I want more information about research? Check with your doctor, the hospital library or the Cancer Information Service. Physicians Data Query (PDQ) lists research trials in process throughout the country. These trials offer a good way to receive cancer treatment.
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c
ancer terms
Alopecia – the loss of hair; common side effect of cancer treatment Anemia – a decrease in the number of red blood cells that carry oxygen Anorexia – loss of appetite Antiemetic – medicine to prevent or reduce nausea and vomiting Benign – not cancerous Biopsy – procedure of removing living tissue to test for cancer Bone marrow – the soft, spongy material inside the bones that makes red blood cells, white blood cells and platelets Cancer – general term used to describe a malignancy Carcinogen – anything known to cause cancer Chemotherapy – treatment of disease using drugs that keep cancer cells from growing Complete blood count (CBC) – blood test done to count the number of red blood cells, white blood cells and platelets in a blood sample Hormone – chemical made by an organ in the body that has a special action
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Immunotherapy – a treatment to boost or restore the body’s natural ability to fight disease Infusion – the process of letting fluids slowly drip into the vein through an IV Intravenous (IV) – into the vein; also used to describe the process of putting a needle in the vein for infusion Malignant – cancerous Metastasis – used to describe the spread of cancer Neutropenia – low white blood cell count Oncology – the study of cancer Platelets – cells that help blood to clot Prognosis – chance of being cured and recovering from cancer Radiation therapy – cancer treatment using radiation (X rays) Red blood cells (RBC) – cells produced in the bone marrow that carry oxygen to all parts of the body Remission – the absence of signs and symptoms of cancer Stomatitis – irritation or sores on the inside of the mouth Tumor – a mass or swelling that may or may not contain malignant cells White blood cells (WBC) – cells made in the bone marrow that fight infection
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O
ther resources
American Cancer Society National Headquarters 1599 Clifton Road, NE Atlanta, GA 30329 1-800-ACS-2345
Leukemia Society of America 733 Third Avenue New York, NY 10017 (212) 573-8484 www.leukemia.org
www.cancer.org
Make Today Count 101 1/2 South Union Street Alexandria, VA 22314 (703) 548-9674
(227)
American Lung Association 1740 Broadway New York, NY 10019 (212) 315-8700 www.lungusa.org American Society of Plastic and Reconstructive Surgeons 444 East Algonquin Road Arlington Heights, IL 60005 (800) 635-0635 plasticsurgery.org Cancer Care, Inc. 1180 Avenue of the Americas New York, NY 10036 (212) 221-3300 www.cancercare.org The Concern for Dying 250 West 57th Street New York, NY 10107 (212) 246-6962 ENCORE ENCORE Supervisor National Board – YWCA 726 Broadway New York, NY 10003 (212) 614-2827 www.ywca.org/
National Cancer Institute Building 31, Room 10A2A Bethesda, MD 20892 (800) 4-CANCER www.nci.nih.gov The National Coalition for Cancer Survivorship 1010 Wayne Avenue Suite 505 Silver Spring, MD 20910 (505) 764-9956 www.cansearch.org National Hospice Organization 1901 N. Fort Myer Drive, Suite 902 Arlington, VA 22209 (703) 243-5900 www.nho.org United Ostomy Association 36 Executive Park, Suite 120 Irvine, CA 92714 (714) 660-8624 www.uoa.org
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Consultants: Donald J. Filip, MD Medical Oncology/Hematology Atlanta Hematology & Oncology Associates, P.C. Atlanta, GA Charles A. Henderson, MD Medical Oncologist Piedmont Hospital Atlanta, GA LaMar S. McGinnis, MD Medical Director Charles B. Eberhart Cancer Center Atlanta, GA
e believe that you have the right to know as much as you can about your health. Our goal is to give you enough facts to get the main points clearly in mind. We do this with medical accuracy, warmth and humor. The result for you: less tension, more healing and a good idea of what to ask your doctor, nurse or others.
Marianne Pera, RN Clinical Nurse St. Joseph Hospital of Atlanta Atlanta, GA Linda Scheivelhud, RN, RS Consultant Atlanta, GA Louise Villejo, MPH, CHES UT M.D. Anderson Cancer Center Patient Education Office Lee M. Whiten, RNC, MN Sandra H. Yates, RN, MS, OCN The Charles B. Eberhart Cancer Center Dekalb Medical Center Decatur, GA
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ISBN 0-939838-41-9