Survivorship: Living With, Through and Beyond Cancer

Transcription

1 Survivorhip: Living With, Through and Beyond Cancer Survivorhip: Living With, Through and Beyond Cancer a

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3 Table of Content To the patient and family...2 What i a urvivor?...2 Stage of urvivorhip...2 Communicating with the health care team...3 Phyical change of cancer treatment... 4 Bladder and bowel change... 4 Cancer that return or econd cancer... 4 Diabete... 4 Eyeight, hearing, peech and dental... 4 Hormone change... 5 Fatigue... 6 Hypothyroidim... 6 Learning and memory problem... 6 Lymphedema... 6 Neuropathy... 6 Organ damage... 7 Oteoporoi... 7 Pain... 7 Palliative care... 9 Premature aging... 9 Sexual health... 9 Sleep lo Guideline for follow-up care...10 Tip for healthy living Exerciing Eating well Reducing tre Getting regular check-up Avoiding tobacco Pychological, ocial, emotional and piritual impact of cancer...13 Pychological, ocial and emotional change Spiritual change Returning to your daily life Talking about your cancer with other Book Brochure Web ite Financial and legal impact of cancer...16 Advance Directive American Aociation of Retired Peron (AARP) American Cancer Society American with Diabilitie Act Cancer Legal Reource Center (CLRC) Internal Revenue Service (IRS) Life and Health Inurance Foundation for Education (LIFE) Medicaid Medicare Social Security Diability Inurance Supplemental Security Income (SSI) Brochure...19 Gloary...20 Survivorhip Reource...22

4 My urvivorhip tarted the minute I decided that thi wan t going to be the end for me, that I wa going to beat the dieae. Rita, urvivor To the patient and family Thi booklet i for people who have been diagnoed with cancer. If you have quetion that are not anwered in thi booklet, pleae ak your health care team. For more information, viit Word that may be new to ome reader appear in italic. The gloary ection in thi booklet give the meaning of thee term. For an at-a-glance look at M. D. Anderon reource, refer to the table in the back of the booklet. What i a urvivor? A cancer urvivor i often defined a anyone who ha been diagnoed with cancer, from the time of diagnoi and treatment through the remaining year of life. Recently, ome group have widened that definition to include the people in a cancer patient life. Thi would include family member to friend and caregiver. In thi guide, however, the term cancer urvivor refer to anyone who ha been diagnoed with the dieae. At M. D. Anderon, your health care team will provide you the bet poible care. On your team are pecialit from every field related to the diagnoi and treatment of cancer. They will combine their knowledge and kill to develop your treatment plan and ongoing care. When I firt got thi dieae, I thought that I would get back on the bike, o to peak. And it really taken me a long time to accept you know that that really not going to happen. I m till having a good life, and I till have an opportunity to find fulfillment a a human being, but it under a different et of parameter than it wa before. Max, urvivor You are alo a member of your health care team. A an active member of thi team, your role i to ak quetion when you need more information. If you have any quetion about M. D. Anderon reource and ervice, ak a member of your health care team. Stage of urvivorhip There are three tage of urvivorhip. Living with cancer begin at the moment of your diagnoi. The focu i on treatment, getting rid of the cancer, if poible, or controlling the cancer to the point where you can live with it long term. During thi time, you may be offered treatment option uch a urgery, chemotherapy and radiation therapy a well a medication to manage ide effect of the treatment. You may be aked whether you would like to join a clinical trial, in which new cancer drug and treatment are tudied. You alo may be offered ervice to help you and your caregiver cope with emotional and practical concern. Living through cancer refer to the period following treatment in which you are at a relatively high rik of a recurrence of your cancer. At thi tage, you 2 M. D. Anderon Cancer Center

5 Sometime I feel down, and other time I feel great, but I m trying to keep on the great ide o it not much of a roller coater. Frank, urvivor may feel relieved that treatment i over but anxiou about the fact that you no longer ee your cancer doctor on a daily, weekly or monthly bai. During thi tage, you typically ee your cancer doctor every three, four or ix month, depending on your treatment plan. Thi i alo a time of rehabilitation, epecially if treatment included urgery that phyically changed your body. Living beyond cancer refer to pot-treatment and long-term urvivorhip. You may find your life return to what you knew before you had cancer. Or, you may find that phyical, pychoocial or financial concern continue a a reult of earlier treatment. Thi i often referred to a a new normal. During thi tage, you may develop a plan for your ongoing health care with your cancer doctor and community health care provider. It ha put faith back into the medical profeional for me, that I can actually talk to doctor, and to nure, and we re jut people figuring out the ame problem We re part of a team, and you re not alone, you are not alone. Carolyn, caregiver I would ay that one of the tronget tool that cancer patient have i themelve and their team. Sergio Giralt, M.D., Profeor, Stem Cell Tranplantation Communicating with the health care team Your care at M. D. Anderon i baed on a team, or interdiciplinary approach. Thi mean that pecialit from variou area and dicipline will be involved in planning your treatment. The team include your doctor, nure, cae manager, pharmacit, therapit, dietitian and ocial worker to name a few. You may meet with the member of your health care team oneon-one or in a group. Communicating with your health care team i important. It your patient right and reponibility to ak lot of quetion. Keep aking quetion until you undertand what your health care team i aying and what you need to do to take care of yourelf. To make a viit with any of your health care team member eaier, here are a few tip. Prepare a lit of quetion to ak your doctor. Bring a friend or family member with you to take note during the appointment. Report any new or different ymptom to your doctor. Repeat intruction back to your health care team to make ure you have the right information. Speak up. Before you leave your appointment, make ure you addre any quetion or concern. Follow up. If you have any quetion after your appointment, contact your health care team. Keep a journal or a notebook to record your medical hitory in your own word and for your own ue. It important to communicate with your health care team through every tage in your cancer experience. Some urvivor may need more information than other depending upon their diagnoi and treatment. If you have quetion or concern, don t heitate to contact your health care team. Interpreter are alo available through Language Aitance at Survivorhip: Living With, Through and Beyond Cancer 3

6 Phyical change of cancer treatment Phyical change cancer patient go through can be caued by the cancer itelf and/or the therapie ued to treat cancer. Short-term ide effect occur during treatment. Long-term ide effect are thoe that begin during treatment and continue after the end of treatment. Late ide effect are ymptom that appear month or year after treatment ha ended. The phyical change you may experience depend upon your cancer type and the treatment you receive. Some pecific ide effect may include: Bladder and bowel change Cancer and it treatment may change the way your bladder and/or your bowel work. Thee change can affect your everyday tak. You may have incontinence (a lo of urine) while coughing, neezing, training or leeping. Depending on what bladder change have occurred, you may ee a Wound, Otomy and Contience (WOC) nure or you may require a referral to a urologit. Bowel change may include contipation and diarrhea. Ak your doctor or nure for a referral to a dietitian to learn more about how food affect your bowel. For help with bowel change, you can attend the Bowel Management cla. For more detail, call the Patient Education Office at You can alo ak your health care team for a referral to: Department of Clinical Nutrition Department of Gatroenterology, Hepatology and Nutrition Cancer that return or econd cancer Mot cancer patient live with the poibility their cancer may return or pread. Some type of cancer may increae the rik of you getting a econd cancer. Pleae ak your doctor or nure if you have any quetion. Diabete Some drug taken during your treatment may caue your blood ugar level to rie. If your blood ugar level tay high after treatment top, you may be at rik for diabete. If you have quetion or concern about diabete, ak your health care team for a referral with the diabete educator in the Internal Medicine Center. For help with diabete, you can attend the Diabete and You clae. For more detail, call the Patient Education Office at Eyeight, hearing, peech and dental Your cancer and it treatment may affect your eyeight, hearing, peech or mouth. Example of how thee area of your body can be affected are a follow: 4 M. D. Anderon Cancer Center

7 Radiation around the area of the eye may increae the rik of eye problem uch a cataract. Taking teroid medication alo can increae your rik for cataract. For children, radiation to the bone near the eye may low bone growth and top them from forming correctly. In addition to teroid medication and radiation, other cancer drug can lead to problem uch a blurred viion, double viion or glaucoma. If you have problem with your viion during or after your treatment, your doctor may refer you to an eye pecialit, called an ophthalmologit, in the Department of Head and Neck Surgery. Certain chemotherapy drug and antibiotic medication may caue hearing lo. Radiation to the brain or ear may lead to hearing lo a well. Hearing aid may help correct problem caued by your treatment. If you have problem with your hearing, you may be referred to a hearing pecialit, known a an audiologit, in the Department of Head and Neck Surgery. After certain urgical procedure to the head and neck, your peech, your ability to wallow and your ability to communicate may be affected. If you have problem with your peech, your doctor may refer you to a pecialit, called a peech pathologit, in the Department of Head and Neck Surgery. Anyone who i living with and through, and after the cancer i a urvivor. There are jut different problem to deal with at each of thee tage. Alma Rodriguez, M.D., Profeor, Lymphoma Chemotherapy may affect tooth enamel and increae the rik of long-term dental problem. High-doe radiation to the head and neck area can change tooth development and caue gum dieae. Or, it may caue tooth decay or lo and decreae the amount of aliva (pit), cauing a dry mouth. Mouth or throat orene and/or ulcer may reult from your cancer treatment a well. Thee ide effect can be painful and can make it difficult for you to eat, talk and wallow. You may be referred to a pecialit in our dental clinic in the Department of Head and Neck Surgery if you have problem with your teeth, gum or mouth. Cancer urvivor hould have regular check-up to help find or prevent any eyeight, hearing, peech or dental problem. If any of thee iue need attention, ak your doctor to refer you to the appropriate pecialit. Hormone change Sometime cancer treatment can change the body natural hormone. For women, mentrual period may uddenly top (early menopaue). Other ide effect for women may include hot flahe, vaginal dryne, pain during exual activity, fatigue, mild depreion and problem leeping. Men may have le tetoterone. Men may alo experience hot flahe, problem leeping, fatigue and mild depreion. They may alo have a lo of interet in ex and erection problem. Pleae tell your doctor or nure if you have any hormonerelated ide effect that are bothering you. Women may need to make an appointment with their gynecologit or ak for a referral to ee a gynecologit in the Gynecologic Oncology Center. Men may need to ak for a referral to meet with a doctor in the Endocrine Center. Survivorhip: Living With, Through and Beyond Cancer 5

8 Fatigue Fatigue i the mot common ide effect of your cancer and it treatment. You may feel very tired no matter how much leep you get. If you are feeling overly tired, ak for a referral to the Fatigue Clinic. You may find new way to relax and ave energy. You can alo attend the Cancer-related Fatigue cla. For detail, call the Patient Education Office at Or, you can attend relaxation clae offered at the Place of wellne, Hypothyroidim Some cancer treatment caue your thyroid gland to make too little thyroid hormone. Thi i called hypothyroidim. When thi happen, you may gain weight, become contipated, have dry kin or alway feel cold. Thi health problem can be treated with medicine. To learn more, ak your doctor or nure. Learning and memory problem Cancer treatment may caue problem with learning and memory. For example, you may forget a word, name or thought in the middle of talking to omeone. Thee change, which may occur during or right after treatment, are ometime called chemobrain. Cancer itelf may alo affect learning and memory. Memory lo may improve in long-term urvivor. For help with thee change, ak for a referral to viit a neuropychologit in the Neuropychology Service. Or, you can attend the Chemobrain: I it real? cla at the Place of wellne, Lymphedema Lymphedema i welling that occur in the arm or leg. It i caued when lymph node are removed by urgery or damaged by radiation. Fluid build up in the tiue in the arm and leg, which lead to welling, pain and limited motion. Lymphedema may occur everal month after urgery or radiation or many year later. If you notice welling in your arm or leg, contact your health care provider. Early treatment will help prevent problem. For help, ak for a referral to Rehabilitation Service. Neuropathy One of the mot difficult treatment ide effect i neuropathy. Neuropathy i a tingling, burning or numb feeling in the hand and/or feet due to nerve damage. Neuropathy can be caued by radiation, urgery and chemotherapy. Thi ide effect may improve when your treatment top and may get better over time. It alo may lat for many year. For help with your neuropathy ymptom, you may be referred to Rehabilitation Service or the Department of Neuro-Oncology. Acupuncture ervice are alo available at the Place of wellne, M. D. Anderon Cancer Center

9 Organ damage Certain type of cancer treatment can age or damage your heart, lung, liver or kidney. Thi damage may caue long-term health problem. Thee problem may appear a you age or have other health problem. Ak your doctor or nure to help you undertand your lab report. For more information about how to read your lab report, viit The Learning Center. Some cancer treatment can caue heart failure. Certain type of chemotherapy medicine can be harmful to the heart. Heart failure ymptom can include hortne of breath, feeling weak and tired after regular activity or while at ret, chet dicomfort or feeling the heart beat fat. Your doctor will creen you for heart failure during your treatment and may refer you to the Cardiopulmonary Center. Certain drug can damage the lung and airway. Thee drug can include ome antibiotic, chemotherapy medicine or ome type of biotherapie. Common ymptom of lung damage can include problem breathing, coughing or pneumonia. It i important that you tell your doctor if you experience any of thee ymptom. Some chemotherapy medicine can damage your liver. Symptom of liver damage may include dark urine, pale tool, yellowing of your eye or kin, welling or pain in your abdomen (tomach area), flu-like ymptom or evere fatigue. When taking ome chemotherapy drug, you will have regular blood tet to check how your liver i working. Other chemotherapy medicine can damage your kidney. Symptom of kidney damage include decreaed urine flow or bladder irritation and bleeding. You may alo have a change in urine color or a burning feeling while you urinate. Your doctor will check your kidney function cloely. Should you experience any of the above ymptom, tell your doctor or nure. Oteoporoi Oteoporoi (bone lo) occur when bone ma i lot fater than it can be replaced. Thi reult in weaker bone that may break more eaily. Your cancer, cancer treatment or other ide effect may caue bone lo. To peak with a doctor about oteoporoi, ak for a referral to the Internal Medicine Center. Pain Cancer pain take many form. It may be hort-lived or long-lating. It alo can be mild or evere. It can affect your bone, nerve or organ. Each patient pain i unique. Pain doe not alway mean the tumor ha grown or returned. Your cancer or it treatment may caue pain. You alo may have pain that ha nothing to do with your illne or it treatment. Talk to your doctor or nure about ign and ymptom to watch for and what you can do to reduce the chance of recurrence or econd cancer. Alo, ee the Guideline for follow-up care ection on page 10 in thi booklet. Survivorhip: Living With, Through and Beyond Cancer 7

10 Hopice Care A hard a it may be for you to approach the end of life, there may come a time when you ak yourelf, What if I do not recover from my cancer? What can I do to prepare myelf and my family? Will I be in pain? Will I be afraid? You can plan to have the bet poible end of life. Hopice care or end-of-life care provide medical, pychoocial, and piritual upport to terminally ill patient and their loved one. Hopice i about quality of life peace, comfort and dignity. The goal of hopice care i to control pain and other ymptom o the patient can remain a alert and comfortable a poible. Hopice care i available for patient who can no longer benefit from curative treatment. The typical hopice patient ha a life expectancy of ix month or le. Hopice program provide ervice in variou etting: the home, hopice center, hopital or killed nuring facilitie. Patient familie are alo an important focu of hopice care, and ervice are deigned to provide them with the aitance and upport they need. The following reource may offer help for people eeking hopice care and information: Chaplaincy, Department of Social Work, Supportive Care Service and Rehabilitative Medicine, M. D. Anderon Cancer Center

11 For help with thee concern, ak for a referral to the Pain Management Center at PAIN ( ). You can alo attend the Pain Management cla. For more information, call the Patient Education Office at Acupuncture ervice are available at the Place of wellne, If the pain i udden and new, like preing chet pain, call 911 or go to the nearet emergency room. If you have pain with fever, nauea, vomiting or bleeding, you alo need emergency help. Palliative care Palliative care help patient with advance dieae or evere ide effect to attain the bet poible quality of life. A team of pecialit in the Supportive Care Center work together to ae and manage evere cancer-related ymptom. For additional help, call the Department of Social Work at Premature aging Some of your treatment may caue health problem that are more often een in older people. Thee may include bone lo, arthriti (joint pain), early menopaue, infertility and exual health change. It hard to know what will happen becaue every peron i different. But no matter what, you deerve the bet quality of life, and thi include your exual health. It ha an emotional impact on who you are, and how you conduct yourelf intimately and what i thi going to mean [to me]. Rita, urvivor Sexual health When you find out you have cancer, your exual health may not be high on your lit of worrie. Becaue you are dealing with big choice and coping with treful change, the topic of exuality may be the lat thing on your mind. Your exual health i a peronal topic, and your feeling and need are unique. At ome point, you may find that cancer ha affected your exual health. Thee effect can be temporary or permanent. Some of thee change may include: Struggle to feel normal or attractive Lo of deire to have ex or difficulty being exually reponive or intimate with your partner Phyical change to your body (e.g., removal of one or both breat or teticle) Hot flahe (men and women) Not being able to get or keep an erection (erectile dyfunction) Trouble enjoying ex becaue it i painful or vaginal dryne Trouble being able to have children (infertility). For more information about fertility, viit Concern about the afety of a pregnancy after cancer Intimacy i not jut ex. It i alo touching and cloene with omeone. It mean caring about omeone. It include haring your hope and feeling. Finding way to be intimate with your partner during and after treatment i very helpful. Talking to your partner i key to good exual health during and after treatment. Survivorhip: Living With, Through and Beyond Cancer 9

12 By learning more about how cancer can affect your exual health, and how to deal with thee change, talk with your doctor or nure before treatment begin. Patient may be unure about how to talk about their exual health with their doctor or nure. If your doctor or nure eem uncomfortable talking about your quetion or concern, ak to ee a pecialit. Thi could be a doctor or mental health profeional trained to treat change and iue related to your exual health. To meet with a exual health pecialit, ak your doctor for a referral to the Pychiatry Service at For help with erectile dyfunction, ak your doctor for a referral to a urologit. Sleep lo Being able to fall aleep or tay aleep can be a problem for cancer urvivor. While leeping, you may have hot flahe, night weat, breathing problem or feel worried. For help with thee concern, you may be referred to the Sleep Center, Internal Medicine Center or Pychiatry. You alo can attend relaxation clae offered at the Place of wellne, For a lit of the mot common health problem by cancer type, viit our Web ite at Guideline for follow-up care Individual who maintain their health are going to be able to face econd challenge of cancer if they do, unfortunately occur. So it important that the patient have an overall focu on health. Alma Rodriguez, M.D., Profeor, Lymphoma After treatment, you will mot likely ee your local doctor for follow-up care. Your local doctor may know little about your cancer and treatment. Before going home, your cancer doctor will give you a follow-up plan of care. You can hare thi plan of care with your local doctor. Thi plan hould include: The type of cancer you had The treatment you had for your cancer Poible ide effect of your treatment When to come back for follow-up viit The type of follow-up tet you will need Tip for taying healthy Mot follow-up plan focu on the firt five year after treatment. There are uggeted yearly tet and procedure for each type of cancer. You can viit our Web ite for uggeted yearly tet and procedure. org/topic/urvivorhip. 10 M. D. Anderon Cancer Center

13 Survivor often have quetion about their genetic rik for cancer. They alo may be concerned about the cancer rik for their children. Genetic couneling and teting can help anwer thee quetion for you and/ or your children. In genetic couneling, a counelor review your peronal and family hitory of cancer. Thi i ued to etimate your peronal cancer rik. If your hitory ugget that the cancer in your family may be hereditary (run in your family), you can then chooe to have genetic teting. Genetic teting involve taking a blood ample to ee if you have a genetic mutation that may increae your rik for cancer. Call Clinical Cancer Genetic at for more information or to make an appointment. Tip for healthy living A healthy way of life i important for everyone. Healthy choice hould be a part of each day. Cancer urvivor mut focu on their health even if they feel fine after treatment. A elf-care plan i a tool that can help you make healthy lifetyle choice. Your own elf-care plan can include your daily diet and exercie need. Thi plan may lower your rik for illne and help improve your quality of life. A healthy way of life may not alway top cancer from coming back or preading. But, healthy choice can make you feel your bet every day. Follow your plan, but be ure to talk to your doctor if any problem arie. Together, you and your health care team can develop the bet elf-care plan. Your elf-care plan will include five part: Exerciing Eating well Reducing tre Getting regular check-up Avoiding tobacco Every elf-care plan i different. So, it i vital that you talk with your health care team about your health when making your elf-care plan. Here are ome healthy way to tart your elf-care plan. Exerciing Daily exercie will help you feel your bet every day. Example of exercie include: Walking Swimming Cycling Gardening and outdoor work Playing port you enjoy The Learning Center offer material about fitne and exercie uch a yoga, Pilate and trength training. The Place of wellne offer clae uch a yoga and tai chi. Clae are free of charge. Call to learn more. Eating well There are many way to eat healthy. Guideline for eating well include: Eating at leat five erving daily of fruit and vegetable Eating plenty of fiber (uch a bean, pea and whole grain food) Drinking eight to 10 glae of water per day Avoiding alted, pickled or moked food Limiting red meat Drinking little or no alcohol Survivorhip: Living With, Through and Beyond Cancer 11

14 You alo can meet with a dietitian to learn about good food choice. Ak your doctor or nure for a referral to a dietitian. The Learning Center offer material about nutrition and healthy living. Cooking clae are alo offered by the Place of wellne, Reducing tre It i not alway poible to keep a treful change or event from happening in your life. Many change are out of your control. But you can control how you react to thee change. Learning to cope with tre can improve your health and make life more enjoyable. If you d like a copy from your medical record uch a lab report, call the Releae of Medical Information office at The following tip can help you cope with tre: Do thing you find fun and that make you laugh Do thing that make you feel relaxed Take clae, like muic or painting Write in a journal Pray or meditate Attend upport group, eek couneling or hare your feeling with cloe family or friend Accept what you cannot change The Place of wellne offer many clae for cancer urvivor and their family. Clae are offered on journaling, meditation, muic, crap booking and much more. Call to learn more. The Department of Social Work provide couneling free of charge for patient and their familie. Support group are alo available. Call to learn more. Patient and family member can meet with a chaplain at any time. Chaplain offer prayer and piritual upport for all faith tradition. Call to learn more. Getting regular check-up A a cancer urvivor, maintaining your health care i important. Take your medicine a directed. Have regular check-up. Know what ign and ymptom to look for and when to call a member of your health care team. During and after treatment, there are till thing you can do to improve your health. It may mean learning new way to exercie, eating a healthy diet and reducing tre. Talk to your doctor about what you can do to tay healthy. You can alo viit the following ervice: akmdanderon, MDA-6789 ( ) Cancer Prevention Center, The Learning Center, M. D. Anderon Cancer Center

15 Avoiding tobacco Tobacco ue i the ingle mot preventable caue of death in the United State. Smoking or uing chewing tobacco put you at rik for everal type of cancer. Tobacco ue increae the rik of your cancer coming back or getting a econd type of cancer. By quitting moking, your treatment outcome may improve. If you ve tried quitting before, but were not ucceful, don t give up. It never too late to improve your health by kicking the tobacco habit. For free couneling and medication, call the Tobacco Treatment Program at QUIT ( ) or quitnow@mdanderon.org. Pychological, ocial, emotional and piritual impact of cancer A a urvivor, cancer and it treatment doe not only affect your body. You alo may have pychological, ocial, emotional and piritual change. It i not eay to ee thee a eparate becaue they are cloely connected. Thee change can affect your quality of life and may continue to be felt after your treatment i over. There are no guideline on how to be a urvivor. Thee change may come and go and may be different during and after treatment. I have had to learn to not be o cared. You know, everything doe not have to be perfect in life to be happy. Be real and if you re not able to handle it, get ome help. If you re not able to handle it, it ok. Carolyn, caregiver Pychological, ocial and emotional change You may have fear, anxiety, anger, guilt, grief or depreion. You may ee a change in your elf-image and/or elf-eteem. You alo may have a change in family role. At the end of thi ection, M. D. Anderon reource are provided to help you with thee emotion. It i normal to be angry when you have cancer. It affect your job, chool and relationhip. Let your anger out in a poitive way. Some urvivor find it helpful to talk to a counelor or upport group or to a good friend. Other urvivor find it helpful to write about their anger or to paint or draw. Uneaine or anxiety i a common feeling when dealing with cancer. You may have many quetion about your health, finance and loved one. For example: How eriou i my illne? Will my health inurance cover my care? Who will take care of my family? It i common to feel ad and depreed about your illne. At ome point, many cancer urvivor feel depreed. However, pleae talk to your doctor or nure if you feel bad for more than a couple of week or feel o ad that you can t do normal, everyday thing. Joining a upport group may help. Exercie Survivorhip: Living With, Through and Beyond Cancer 13

16 and pending time with friend or family alo may make you feel better. It i not uncommon for cancer urvivor to have fear. You may fear the unknown. You alo may fear that your cancer will come back. Fear can be good and bad. Fear i good if it make you talk with your doctor when you have a new ache or change in your body. Fear i bad if it keep you from making deciion. Grief i a normal proce that help people heal after lo. Many loe may come with cancer. Thee loe can be imple or complex. Loe can include a change in your health and independence. You may want to avoid the feeling of grief. Intead, it important to eek help. I m going to have to live with an amputation for the ret of my life I think I wa really concerned about, you know, am I going to be normal after thi. Am I going to look normal, am I going to walk normal? Shelby, urvivor During treatment, you may ee change to your body. Thee change may bring feeling of low elf-eteem and elf-image. Some may have extreme weight lo or weight gain. Mark on the body uch a radiation tattoo, eye patche or car are hard to deal with for ome people. There i ometime a feeling of lo. It may be a lo of a body part (amputation). Or, it may be a lo of bladder control. Some who have a urotomy (an opening to get rid of urine) or colotomy (an opening to get rid of body wate) feel unure in public. It may be a lo of feeling like a man or a woman. Some have iue being intimate with their partner. Thi i often common for women who have a matectomy (removal of breat) or men who had a protatectomy (removal of the protate). Some urvivor feel a ene of guilt for urviving their cancer while other may not. A a urvivor, you may ak, Why am I the one to urvive? You may then truggle with another quetion: If I have urvived, what i the meaning of my life now? Thi may caue you to take a cloer look at your life, rethink your goal, and how you want to live your life or pend your time. If your ene of guilt lat for a long period of time, there are people who can help you talk through your feeling. There are thing you can do to help yourelf cope with your emotion. Write down your thought and feeling in a journal Try yoga, tai chi or meditation Share your concern with a friend or upport group Learn the difference between normal body change and eriou change Know when to call your doctor Coach yourelf to think in a poitive way 14 M. D. Anderon Cancer Center

17 If you d like to talk with omeone about any of thee or other feeling, ak for a referral to the Pychiatry Service. For other reource, call: Your doctor or nure Anderon Network, or Chaplaincy, Department of Social Work, Place of wellne, Spirituality mean different thing to different people. It i about having feeling of faith, hope and love. You may be looking for life meaning and purpoe, or you may want to reach out and help other. Many people alo follow a religion and join a community of a certain faith. Thee and many other way how how people connect with each other and life in a piritual way. M. D. Anderon chaplain can guide patient on their piritual journey, whatever path it may take. Spiritual change Like many urvivor, you may find that your life take on new meaning after cancer. Your value may have changed. Your tie to other may have become tronger. Some urvivor rely on their piritual belief to help them through illne. On the other hand, you may feel abandoned. You may wretle with the quetion, Why me? More and more urvivor are following a holitic approach. A holitic approach conider the whole peron body, mind and pirit. There are many place to learn more about the tie among body, mind and pirit. For more detail, viit the following: Chaplaincy, Place of wellne, Returning to your daily life You may have a hard time returning to your daily life and work. Thi may caue tre. Some worrie may include: Rik of infection Lack of energy during the day Memory lo or chemobrain You may have dealt with life-and-death quetion. Thi may caue you to feel alone. Talking to other urvivor may be helpful. To be matched with a urvivor, call Anderon Network at or For additional help, call the Department of Social Work at Talking about your cancer with other In the pat, mot people did not even want to ue the word cancer. If cancer wa talked about at all, it wa done o in huhed tone and often called the Big C. Becaue little wa known in the pat about how you get cancer, people feared what other would think if they talked about their illne. While time have changed, you may fear you will be een differently. You may be afraid to tell your employer or coworker you are being treated. You may fear loing your job or health inurance. Thi fear add to the emotional tre of having cancer. Survivorhip: Living With, Through and Beyond Cancer 15

18 One of the hardet thing to face i how the people cloet to you will react. Often friend, coworker and family member don t know how to talk to you about their own fear. Some may ue humor to avoid eriou talk about cancer. Other may not know what to ay or how to act. They may pretend nothing ha happened. Thi can lead to ilence. With thi ilence, you may begin to feel abandoned. Still other may continue to treat you like a ick peron well after your treatment. They may ak you quetion about your health. Since cancer can be a long-term illne, talking about it early i an important tep. But, you do not need to hare anything that make you uncomfortable. Reource that can help you talk to other about your cancer include: Today, many type are either curable or chronic, and patient will live through the cancer, or with the cancer for year. Alma Rodriguez, M.D., Profeor, Lymphoma Book The Cancer Survivor Guide: The Eential Handbook to Life After Cancer by Micheal Feuertein, Cancer Survivorhip: Today and Tomorrow by Patricia Ganz, From Cancer Patient to Cancer Survivor: Lot in Tranition by Maria Hewitt, Brochure Facing Forward: Life After Cancer Treatment, National Cancer Intitute, When Someone You Love Ha Completed Cancer Treatment, National Cancer Intitute, The Road to Survivorhip: Living After Cancer Treatment, Lance Armtrong Foundation, Web ite American Cancer Society Cancer Survivor Network CureSearch National Childhood Cancer Foundation M.D. Anderon Cancer Center mdanderon.org/topic/urvivorhip National Cancer Intitute cancercontrol.cancer.gov/oc National Coalition for Cancer Survivorhip Financial and legal impact of cancer Money iue can have a major impact on urvivor. Survivor can be left paying for ome or mot of their treatment cot. If you are the major wage earner, there may be little or no income during treatment. Inurance coverage can alo change after cancer treatment. Benefit may be reduced or lot. A a reult, you and your family may face major debt. 16 M. D. Anderon Cancer Center

19 At M. D. Anderon, you will get a patient tatement for every month in which there are charge, payment, adjutment and/or open balance. You can alo view your tatement online at org. For help with your tatement, call Patient Buine Service Cutomer Service at Many familie need financial help after cancer treatment. For quetion about the cot of your care or your bill, talk to your Patient Acce Specialit in your center. If the cot of your care i beyond your financial mean and you are a Texa reident, you may requet an Application for Supplemental Financial Aitance. If you wih to apply for Texa Medicaid or diability, your Patient Acce Specialit will refer you to our third party eligibility pecialit. Thi ervice i provided free of charge. For non-texa reident, talk with your ocial worker. He or he can tell you about program that may help baed on your pecific need. Call the Department of Social Work at Legal iue are alo important to urvivor. Your cancer hitory can affect your right at work and your inurance option. You are encouraged to know your right a a cancer urvivor. Survivor alo hould plan for the future. It i never too oon to make financial and legal plan. Prepare legal document that will make your wihe known. Proper planning will make ure your wihe are followed and eae the tre of deciion making for your loved one. Reource The following reource can help you with financial, legal or job-related concern. Advance Directive , Department of Social Work Advance directive allow you to tate your choice for health care if you become too ick or unable to make deciion. There are three kind of advance directive: Living Will Medical Power of Attorney Out-of-Hopital Do-Not-Reucitate Order If you have quetion or need help, contact the Department of Social Work. American Aociation of Retired Peron (AARP) 888-OUR-AARP ( ) AARP i a nonprofit organization for people age 50 and over. It offer information about finance and retirement planning. On it Web ite, you can ue the online money calculator and read financial new. American Cancer Society 800-ACS-2345 ( ) Search Taking Charge of Money Matter The American Cancer Society offer the cla Taking Charge of Money Matter. The cla focue on money iue for cancer urvivor or thoe touched by cancer. Survivorhip: Living With, Through and Beyond Cancer 17

20 American with Diabilitie Act Know your civil right a a cancer urvivor. The American with Diabilitie Act make it illegal to be denied a loan or other financial ervice baed on your cancer hitory. The U.S. Department of Health and Human Service Office of Civil Right ha baic information to help you undertand the rule and proce your complaint. Cancer Legal Reource Center (CLRC) 866-THE-CLRC ( ) With cancer, you may face many legal iue. Thee can include: Inurance coverage Job dicrimination Acce to health care Child cutody Etate planning Thee legal iue can caue worry, confuion and tre. If they are not addreed, you may find yourelf dealing with the lo of a home, job, and/or inurance. The CLRC provide free reource on cancer-related legal iue. All couneling i confidential. It i available to people with cancer, their familie, friend and other coping with cancer. Internal Revenue Service (IRS) In addition to tax information, the IRS offer helpful tip to tart and maintain a retirement plan. On their Web ite, you can view different type of retirement plan and the benefit of each. Your retirement plan could be a ource of cah and a way to fund a diability. Know your plan. Fund may be available if you are till employed and meet the plan hardhip condition. Life and Health Inurance Foundation for Education (LIFE) LIFE i a non-profit organization for information about life, health, diability and long-term care inurance. Check to ee what cah or loan benefit your life inurance can provide. Keep your policy if you leave your job. Some life inurance companie offer predeath benefit. 18 M. D. Anderon Cancer Center

21 Medicaid Medicaid i a government ponored health inurance program for people with low income. Whether you qualify for Medicaid will vary from tate to tate. Check with your local Medicaid office for detail. Medicare 800-MEDICARE ( ) Medicare i a government ponored health inurance program for people 65 and older. Medicare i divided into two part, Part A and Part B. Part A pay for hopital, home health and hopice care. Part B cover medical ervice, uch a phyician ervice and home medical equipment. Part B alo cover cancer creening exam. Social Security Diability Inurance The Social Security Adminitration offer Social Security Diability Inurance. If you are diabled and have contributed to Social Security, you may be eligible to receive benefit. Supplemental Security Income (SSI) The Social Security Adminitration offer Supplemental Security Income (SSI). Thi program help diabled peron with little or no income. Money i provided to meet the baic need of food, clothing and helter. Call or viit the Web ite to find out if you qualify. Brochure View online or viit The Learning Center for copie of thee brochure: What Cancer Survivor Need to Know About Health Inurance, Kimberly Calder and Karen Pollitz, under Find Reource/NCCS Publication Working It Out: Your Employment Right a a Cancer Survivor, Barbara Hoffman, under Find Reource/NCCS Publication Self-Advocacy: A Cancer Survivor Handbook, National Coalition for Cancer Survivorhip, under Find Reource/NCCS Publication Legal Guide for Cancer Patient, Texa Young Lawyer Aociation, Survivorhip: Living With, Through and Beyond Cancer 19

22 Gloary acupuncture acupuncture involve the placement of metal needle in the kin to timulate pecific area of the body. Reearch ha hown that acupuncture may timulate the natural healing proce to retore health and wellbeing. antibiotic medicine ued to treat infection caued by bacteria or fungi. Antibiotic are derived from living organim uch a mold. cataract a cataract i a condition where the len inide the eye become cloudy. When thi happen, light entering the eye i not focued properly. Thi reult in blurry viion that cannot be corrected with glae or contact lene. chemotherapy medicine that kill cancer cell. It work throughout the entire body, killing cancer cell that have pread to part of the body far away from the original tumor. contipation when food move too lowly through the body making it difficult or painful to have a bowel movement diabete diabete i a dieae in which your blood ugar level are too high. Thi may caue blindne, heart dieae, kidney failure and amputation (the lo of a body part). diarrhea watery and frequent bowel movement glaucoma a dieae caued by an increae in eye fluid preure that damage the eye optic nerve. Without treatment, glaucoma can caue blindne. There may be no ymptom of glaucoma, but a yearly eye exam can detect it. infertility the inability to have children interdiciplinary approach when pecialit from variou area and dicipline are involved in treatment planning. new normal the normal you experience after cancer may be different than the normal you experienced before you were diagnoed. It i a new normal. pychological, ocial, emotional and piritual change ee pychoocial definition pychoocial thee change can affect how you think, feel, behave, interact with other and how you find meaning and purpoe in life radiation treat cancer by uing high-energy ray. It pinpoint and detroy cancer cell in your body. Sometime it i called radiotherapy. Although radiation i imilar to an X-ray, the doe i much higher and i given over a longer period of time. recurrence cancer that ha returned. The cancer may come back to the ame place a the original tumor or to another place in the body. rehabilitation a proce to improve phyical activity lot to injury or dieae. It help you regain your trength, relearn kill or find new way of doing thing. thyroid gland make and tore hormone that help control heart rate, blood preure, body temperature and the rate at which food i made into energy. Thi gland i located in your neck. 20 M. D. Anderon Cancer Center

23 Note Survivorhip: Living With, Through and Beyond Cancer 21

24 Survivorhip Reource akmdanderon Anderon Network Cae Management Cancer Prevention Cardiopulmonary Center Chaplaincy Clae (Patient Education Clinical Nutrition Emergency Center Endocrine Center Fatigue Clinic Phyical change Bladder change Bowel change l Dental Diabete Eyeight Fatigue l Hearing Heart failure Hormone change Learning & memory problem Lymphedema Neuropathy Oteoporoi l l Pain Palliative care Sexual health Sleep lo Speech Tip for healthy living Alcohol ue Exerciing Eating well Getting regular check-up Reducing tre Tobacco ue l l Pychoocial, emotional & piritual change Anger Anxiety Depreion Fear Grief Returning to daily life Self-image & elf-eteem Spirituality Survivor guilt Talking with other about cancer Financial & legal impact Advance directive Billing l Referral needed No referral needed

25 Gatroenterology, Hepatology & Nutrition Gynecologic Oncology Center Head & Neck Center Internal Medicine Center Neuropychology Service Department of Neuro-Oncology Pain Management Center Patient Buine Service Cutomer Service Place of wellne Pychiatry Service Rehabilitation Service Sleep Center Social Work Supportive Care Center The Learning Center Tobacco Treatment Program WOC l l l l l l l l l l l l l l l l l l l l l l l l l

26 Note 24 M. D. Anderon Cancer Center

27 Note Survivorhip: Living With, Through and Beyond Cancer 25

28 Note 26 M. D. Anderon Cancer Center

29 Survivorhip: Living With, Through and Beyond Cancer Booklet Evaluation Date: General Information (fill in the circle) 1. Are you: the patient the caregiver 2. What i your primary cancer diagnoi? (for example, breat cancer, kin cancer, etc.) perf do not print - for placement only 3. Baed on the booklet you jut read, pleae fill in the circle that bet decribe your opinion for each tatement below. a. The booklet gave me all the information I needed. b. It wa eay for me to learn from the booklet. c. I learned a lot from reading the booklet. d. Thi booklet i high quality. Strongly agree Agree Uncertain Diagree Strongly diagree e. I would tell other to read thi booklet. Thank you for completing thi evaluation. The Univerity of Texa M. D. Anderon Cancer Center,10.08 Patient Education Office elf adheive trip plvrmrnty - do not print

30 IMPORTANT: DO NOT ENLARGE, REDUCE OR MOVE the FIM and POSTNET barcode. They are only valid a printed! Special care mut be taken to enure FIM and POSTNET barcode are actual ize AND placed properly on the mail piece to meet both USPS regulation and automation compatibility tandard. NO POSTAGE NECESSARY IF MAILED IN THE UNITED STATES BUSINESS REPLY MAIL FIRST-CLASS MAIL PERMIT NO 3275 POSTAGE WILL BE PAID BY ADDRESSEE HOUSTON TX PATIENT EDUCATION OFFICE UNIT M D ANDERSON CANCER CENTER 1515 HOLCOMBE BLVD HOUSTON TX Artwork for Uer Defined (3.83" x 8") Layout: C:\Program File\EnvMgr32\Dazzle32\BRM LAYOUT.LYT October 23, :50:29 Produced by DAZzle Deigner 2002, Verion (c) Envelope Manager Software, (800) U.S. Potal Service, Serial #NO

31 pocket - inide back cover NO DIE CUT ON POCKET

32 Produced by the Patient Education Office Funding provided by generou donor to the Holiday Letter Program at The Univerity of Texa M. D. Anderon Cancer Center 30 M. D. Anderon Cancer Center 8071 gr xxxx