ASK CANCERCARE Ask CacerCare Questios ad Aswers o Copig With Cacer Preseted by Diae Blum, MSW CacerCare Jackie Zahora, LCSW-R CacerCare Lear about: Fidig reliable resources Copig with emotios raised by cacer Supportig a loved oe through cacer Commuicatig with your health care team Help ad Hope Ask CacerCare cover 020809 eg.idd 1 2/9/2009 1:52:33 PM
CacerCare is a atioal oprofit orgaizatio that provides free support services to ayoe affected by cacer: people with cacer, caregivers, childre, loved oes, ad the bereaved. CacerCare programs icludig couselig ad support groups, educatio, fiacial assistace, ad practical help are provided by professioal ocology social workers ad are completely free of charge. Fouded i 1944, CacerCare provided idividual help to more tha 100,000 people last year ad had more tha 1 millio uique visitors to our websites. For more iformatio, call 1-800-813-HOPE (4673) or visit www.cacercare.org. Cotactig CacerCare Natioal Office CacerCare 275 Seveth Aveue New York, NY 10001 Email: teled@cacercare.org Services Tel: 212-712-8080 1-800-813-HOPE (4673) Admiistratio Tel: 212-712-8400 Fax: 212-712-8495 Email: ifo@cacercare.org Website: www.cacercare.org If you are a health care professioal iterested i orderig free copies of this booklet for your patiets, please use the olie order form o our website, www.cacercare.org. Ask CacerCare cover 020809 eg.idd 2 2/9/2009 1:52:33 PM
Ask CacerCare Questios ad Aswers o Copig With Cacer Preseted by Diae Blum, MSW Executive Director CacerCare Jackie Zahora, LCSW-R Ocology Social Worker CacerCare INTRODUCTION page 2 Questios ad Aswers o Copig With Cacer page 4 RESOURCES page 18 This booklet was made possible by a charitable cotributio from Bristol-Myers Squibb. Ask CacerCare Versio B mc sr eg rlg 020909.idd 1 2/9/2009 1:53:42 PM
A cacer diagosis raises may questios ad cocers. Help is available to you every step of the way. Whe you or someoe you love is diagosed with cacer, the mai focus is ofte o uderstadig treatmet optios ad gettig the best care possible. But medical issues are oly oe aspect of how cacer affects your life. Cacer ad cacer treatmet affect you emotioally ad physically, ad the impact exteds ito all the importat areas of your life your daily activities, family, relatioships, work, ad plas for the future. A excellet health care team is a must-have for people goig through cacer treatmet, but so is support for all the o-medical cocers that come up. 2 Ask CacerCare Versio B mc sr eg rlg 020909.idd 2 2/9/2009 1:53:42 PM
ASK CANCERCARE CacerCare is a atioal oprofit orgaizatio that is well kow for our more tha 60 years of experiece helpig people with cacer ad their loved oes cope with cacer. Our professioal ocology social workers specialize i helpig people maage the full rage of cocers raised by cacer. Ocology social workers are professioals who receive specialized traiig i how cacer affects the perso with cacer as well as his or her family members ad loved oes. They provide support for such cocers as sortig through iformatio ad resources ad copig with difficult emotios. This booklet, based o CacerCare s olie colum Ask CacerCare, presets a samplig of the may issues we help people address every day. We hope this iformatio will ecourage you to cotact us for support with ay cocers you may be facig related to your or your loved oe s cacer. Call us at 1-800-813-HOPE (4673) to speak with oe of our ocology social workers, or visit us at www.cacercare.org to lear more about how we ca help. 3 Ask CacerCare Versio B mc sr eg rlg 020909.idd 3 2/9/2009 1:53:42 PM
Q How ca I tell if the medical iformatio I m fidig olie is reliable? A With thousads of websites offerig iformatio o cacer, it ca be hard to kow which oes to trust. Here are some questios to ask yourself whe researchig olie: What is the source of the iformatio? Geerally, atioally kow cacer ceters, large oprofit orgaizatios, ad govermet agecies provide the highest quality iformatio. (See resources o page 18.) Look for medical iformatio based o scietific data ad articles writte by wellkow medical experts o your diagosis. What is the purpose of the site? Sites ru by busiesses or pharmaceutical compaies provide good iformatio about their ow products but are ot the best place to lear about the full rage of treatmet optios. Who are the people behid the website? If a compay or orgaizatio s ame, address, phoe umber, or other cotact iformatio is ot available, fid aother source. Is the iformatio upto-date? The sciece of cacer is chagig all the time, so make sure you have the latest iformatio. Look for a date that tells you whe the article or study was published. The iteret is ot a substitute for idividual medical care. Discuss ay iformatio you fid with your doctor, who is familiar with your specific cacer ad treatmet pla. 4 Ask CacerCare Versio B mc sr eg rlg 020909.idd 4 2/9/2009 1:53:42 PM
ASK CANCERCARE Q I recetly told my so I have cacer, but he has t asked me aythig about it sice the. Should I be worried? A It s atural to be cocered, but your so will let you kow whe he s ready to talk. How ad whe he does so will likely deped o his age ad stage of developmet. Childre youger tha 5 are likely to brig up the subject whe they are closely egaged with you oe-o-oe. Their questios ted to be brief ad cocrete, such as What does your cacer look like? or Does the medicie taste bad? Childre ages 6 11 are usually more iterested i the mechaics of treatmet. They may see the treatmet experiece as a battle or fight aimed at killig the cacer cells. Tees may wrestle with coflictig feeligs, watig to ask questios but thikig it s childish to be worried. It s okay to wait for your so to brig up the subject. However, there may be times whe you eed to start the coversatio. If you are goig to lose your hair or eed to be hospitalized, for example, you ll wat to prepare him for it. Use words that are commo ad familiar to him to make sure he uderstads. For additioal guidace o talkig to childre about cacer, cotact CacerCare for Kids. 5 Ask CacerCare Versio B mc sr eg rlg 020909.idd 5 2/9/2009 1:53:43 PM
Q How do I kow if joiig a support group is right for me? A May people affected by cacer feel that uless others have bee through it themselves, they ca t really uderstad what it s like. Support groups help by givig idividuals a chace to talk to others goig through similar circumstaces. Group members share experieces; provide a listeig, carig ear; ad share tips ad resources they ve discovered alog the way. Are support groups for everyoe? Not ecessarily. For example, some people may ot be comfortable expressig their feeligs i frot of a group. Or you might have a specific cocer that would be better addressed through idividual couselig. But if you re iterested i coectig with other people ad are comfortable with the idea of both providig ad receivig support, joiig a group might be a good fit for you. People with cacer, caregivers, ad loved oes ca choose from several kids of support groups. The majority of groups meet face-to-face, but there are also telephoe ad olie support groups available through orgaizatios such as CacerCare. Support groups led by professioals such as social workers or psychologists are ofte most beeficial, as group leaders offer valuable guidace ad are available to help you idividually as eeded. 6 Ask CacerCare Versio B mc sr eg rlg 020909.idd 6 2/9/2009 1:53:43 PM
ASK CANCERCARE Q My cousi has cacer. How ca I let her kow I m here for her without sayig somethig that might upset her? A It s ormal to be ervous about broachig the subject. Too ofte, however, patiets are t give a opportuity to ope up about their feeligs because loved oes feel ucomfortable discussig the subject or are afraid of upsettig them. Ask your cousi how she is copig ad let her kow you are available to liste if she wats to talk. Oce you ope up the coversatio, though, let her take the lead. Do t push her to talk about her illess. It s possible she may ot wat or be able to discuss her feeligs; yet she will likely appreciate your willigess to liste. Sometimes, people get tired of talkig about their illess. Should your cousi choose to talk about lighter topics, follow her cue. May patiets tell us they appreciate the chace to be able to do ormal thigs ad focus o somethig other tha their cacer. However you decide to show support for your cousi, remember to stay coected. Check i regularly throughout treatmet ad eve oce it s over. Ofte, that is the time whe people with cacer realize the eormity of what they have bee through ad eed extra support. 7 Ask CacerCare Versio B mc sr eg rlg 020909.idd 7 2/9/2009 1:53:43 PM
Q I am experiecig sigificat physical pai related to my cacer. How ca I get relief? A With all the advaces i the field of pai maagemet, there is o reaso for ayoe to deal with costat or severe pai. Help is available, ad pai maagemet should be cosidered a importat part of your treatmet pla. Thik of pai as a message your body seds lettig you kow it eeds help. Pai medicatios ad various other techiques ca offer relief ad improve your quality of life. However, your health care team ca t help you if they do t kow what you are goig through. Effective pai maagemet is about teamwork. You are the expert o your pai, ad your medical team is there to help you maage it. Speak with your health care team about what you are feelig. The more accurately you ca describe your pai, the better they will be able to help you. For istace, ratig your pai o a scale from zero (o pai) to 10 (worst pai) ca be a effective way to measure ad describe your pai to your doctor. Oce your doctor assesses your pai, he or she may prescribe effective pairelievig medicatios to cotrol it. He or she may also recommed omedical techiques such as relaxatio exercises, meditatio, biofeedback, hyposis, music therapy, yoga, acupucture, or 8 Ask CacerCare Versio B mc sr eg rlg 020909.idd 8 2/9/2009 1:53:43 PM
ASK CANCERCARE Tips for gettig effective pai maagemet Tell your doctor immediately about ay pai you are experiecig. Never allow your pai to build up over time. Pai eeds to be moitored ad assessed at each doctor s visit. Prepare a list of your questios beforehad. Write dow ay questios you have about your pai ad how to maage it before you visit or speak with your doctor. Write dow the aswers your doctor gives so you ca review them later. Brig someoe with you to your appoitmet. Havig aother perso there who ca give you emotioal support, ask questios, ad remember iformatio ca help you better address ad maage your pai. Be specific ad describe your pai i detail to your doctor. Do t assume your doctor kows how you feel. Tell your doctor what your pai feels like, whe it is at its worst, ad whe it appears to ease up if it does. Keep a pai diary or joural. Record such thigs as whe ad where the pai occurs, what makes the pai worse, what provides relief, ad how the pai affects your ability to carry out your usual activities. physical therapy. I additio, your doctor may refer you to a pai specialist, who ca provide additioal help i maagig your pai. 9 Ask CacerCare Versio B mc sr eg rlg 020909.idd 9 2/9/2009 1:53:43 PM
Q I am goig through cacer treatmet ad sometimes feel overwhelmed by my thoughts. How ca I stop thikig ad worryig so much? A Feelig ervous ad uable to tur off your thoughts are symptoms of axiety. Axiety is the body s atural respose to a stressful situatio. Whe cofroted with a crisis, the body ofte goes ito fight or flight mode. That is, our heart beats faster, our breathig becomes shallow, ad other chages take place to help us face the situatio at had. Oce the dager is over, the fight or flight respose usually passes. However, a cacer diagosis is t a mometary crisis, ad the axiety or worry it triggers ca stick aroud ad build up over time. Costat axiety may make it difficult for a perso to clear his or her thoughts ad regai a sese of calm. Over the log term, it ca lead to fatigue or eve depressio. Techiques that offer stress relief, eve if just for short periods, are valuable i maagig axiety. 10 Ask CacerCare Versio B mc sr eg rlg 020909.idd 10 2/9/2009 1:53:44 PM
ASK CANCERCARE Here is a simple, four-step breathig exercise to calm your mid ad relax your body: Observe your breathig. While sittig dow, place oe had o your chest ad the other over your avel. What did you otice? For most people, the chest area teds to rise more tha the abdome. Take i a deep breath. This time, exted your abdome. Picture your lugs as log, arrow balloos, fillig up from the back to the frot ad from the bottom to the top. Hold your breath while you siletly cout to five. The, exhale loudly. Repeat the deep breathig techique twice more. If you feel lightheaded durig this exercise, hold the ext breath for a shorter amout of time. Afterward, sit quietly for a momet. Most people experiece a calmig feelig after doig this exercise. The beauty of this stress-relievig techique, which reduces axiety by returig your breathig to its atural state, is that you ca do it aywhere, aytime. Speak with your doctor, urse, or ocology social worker for additioal iformatio o copig with the axiety raised by a cacer diagosis. 11 Ask CacerCare Versio B mc sr eg rlg 020909.idd 11 2/9/2009 1:53:44 PM
Q I ve bee gettig chemotherapy for the past six moths ad otice my memory is ot as sharp as it used to be. Could that be a result of the chemotherapy? A Durig chemotherapy ad possibly for some time afterward, patiets sometimes otice chages i their cogitive, or thikig, abilities. These symptoms are ofte referred to as chemobrai. If you are experiecig the followig types of problems, you may be experiecig chemobrai: Memory loss Trouble payig attetio Trouble fidig the right word Difficulty with ew learig Difficulty maagig daily activities or multitaskig Researchers are ot certai of the exact causes of these difficulties. It s possible the thikig chages are t due to chemotherapy at all but rather to the stress of diagosis. They are studyig this problem to fid ways to treat ad prevet it. Talk with your doctor if you are havig trouble with your memory. A umber of treatable factors ofte affect memory such as low blood couts, hormoal chages, stress, fatigue, sleep disturbaces, ad depressio. Your doctor will likely check you for those coditios, ad if they re ot to blame, he or she ca help you fid ways to maage the problems you are experiecig. Ocology urses ad ocology social workers ca also provide valuable support. 12 Ask CacerCare Versio B mc sr eg rlg 020909.idd 12 2/9/2009 1:53:44 PM
ASK CANCERCARE Q I ve bee diagosed with cacer ad pla to cotiue workig. Do I have to tell my employer that I have cacer? A Work provides icome as well as health isurace ad a sese of well-beig for may people facig cacer. If you decide to cotiue workig throughout treatmet, whether or ot to tell your employer about your cacer is a persoal ad practical decisio. Each workplace has its ow uique culture. It s possible you could face challeges if you choose to disclose your diagosis. For example, some employers or coworkers may assume that you wo t be able to perform your resposibilities as well as you did before cacer. However, may orgaizatios are supportive of employees copig with cacer. For example, some employers are proactive i lettig employees who are diagosed with cacer kow what accommodatios they ca make to help the perso cotiue workig. Before decidig whether or ot to disclose your diagosis, become familiar with the laws protectig you, icludig The Americas with Disabilities Act (ADA) ad the Family ad Medical Leave Act (FMLA). If you decide to discuss your cacer diagosis with your employer ad fid you experiece ufair treatmet as a result, cotact the Equal Employmet Opportuity Commissio (1-800-669-4000 or www.eeoc.gov). This Federal agecy eforces ADA ad FMLA ad helps citizes who feel they have bee discrimiated agaist i the workplace. 13 Ask CacerCare Versio B mc sr eg rlg 020909.idd 13 2/9/2009 1:53:44 PM
Laws related to cacer i the workplace Americas with Disabilities Act (ADA) A Federal law that prohibits discrimiatio agaist people with disabilities. To qualify for protectio uder ADA, employees must: Meet the ADA defiitio of disabled perso Be able to perform essetial job fuctios Not pose a risk to their ow or others health ad safety Not cause udue hardship for the employer from eeded accommodatios Disclose their cacer diagosis to their supervisor or huma resource departmet Orgaizatios with 15 or more employees must follow ADA guidelies. For more iformatio, cotact the ADA at 1-800-514-0301 or visit www.ada.gov. Family ad Medical Leave Act (FMLA) Eables a perso with cacer ad his or her family members to take up to 12 weeks of upaid leave withi oe caledar year. (This law oly applies to orgaizatios with 50 or more employees.) Employees must have worked with their employer for at least oe year to qualify, ad employers must cotiue health beefits durig the leave. Leave does ot have to be take all at oce but ca be take i blocks of time. To lear more about the FMLA, visit the Departmet of Labor website at www.dol.gov/esa/whd/fmla. 14 Ask CacerCare Versio B mc sr eg rlg 020909.idd 14 2/9/2009 1:53:44 PM
ASK CANCERCARE Q Eve with isurace, I have may out-of-pocket expeses related to my cacer treatmet. Where ca I get some help? A There are various orgaizatios that offer fiacial help to people with cacer, ad assistace is available for both medical ad o-medical costs. Orgaizatios to tur to iclude: Co-pay relief programs These idepedet charities assist eligible isured patiets with the co-pay costs of their pharmaceutical products. Each orgaizatio has its ow eligibility requiremets ad oly provides assistace for certai diagoses. Check with each orgaizatio to fid out which coditios are covered. CacerCare Co-Paymet Assistace Foudatio (www.cacercarecopay.org or 1-866-55-COPAY [26729]) Healthwell Foudatio (www.healthwellfoudatio.org or 1-800-675-8416) Leukemia & Lymphoma Society Co-Pay Assistace Program (www.lls.org/copay or 1-877-557-2672) Natioal Orgaizatio for Rare Disorders (www.rarediseases.org or 1-203-744-0100) Patiet Access Network Foudatio (www.patietaccessetwork.org or 1-866-316-7263) Patiet Advocate Foudatio s Co-Pay Relief Program (www.copays.org or 1-866-512-3861) Patiet Services Icorporated (www.ueedpsi.org or 1-800-366-7741) Patiet assistace programs Pharmaceutical compaies developed these programs to provide patiets with referrals to co-pay relief programs, support o reimbursemet issues, ad help with applicatios for assistace. May compaies also provide medicatios at little or o cost to patiets who 15 Ask CacerCare Versio B mc sr eg rlg 020909.idd 15 2/9/2009 1:53:44 PM
qualify for assistace. You ca fid curret programs listed by compay at www.pparx.org. Cacer orgaizatios Several atioal cacer orgaizatios offer assistace with o-medical, cacer-related eeds such as trasportatio, child care, ad help eeded aroud the home. At CacerCare, we provide limited grats to eligible idividuals ad families for such expeses. Other atioal cacer fiacial assistace programs iclude. CacerCare (www.cacercare.org or 1-800-813-HOPE [4673]) America Cacer Society (www.cacer.org or 1-800-227-2345) Leukemia & Lymphoma Society (www.lls.org or 1-800-955-4572) Lymphoma Research Foudatio (www.lymphoma.org or 1-800-500-9976) Natioal Brai Tumor Society (www.braitumor.org or 1-800-934-2873) Natioal Marrow Door Program (www.marrow.org or 1-888-999-6743) Patiet Advocate Foudatio s Colorectal Care Lie (www.colorectalcarelie.org or 1-866-657-8634) Sarcoma Alliace (www.sarcomaalliace.org or 1-415-381-7236 ) Volutary orgaizatios Other orgaizatios i your commuity may also offer assistace with practical eeds. Each orgaizatio offers differet kids of assistace ad may have its ow eligibility rules. Cotact your local Uited Way for referrals (i may commuities, the iformatio lie ca be reached by dialig 211 ). For additioal help locatig fiacial assistace resources, cotact CacerCare. 16 Ask CacerCare Versio B mc sr eg rlg 020909.idd 16 2/9/2009 1:53:44 PM
ASK CANCERCARE Q I recetly completed my cacer treatmet ad am doig well. Everyoe is happy that I m back at work, but I do t feel so cheerful. Is this ormal? A May patiets expect the ed of treatmet to be a celebratory time ad a retur to how thigs used to be. However, may post-treatmet survivors report feelig lost ad ucertai about how best to move o with their lives. This is ormal. I treatmet, patiets are ofte so focused o the medical issues that the full emotioal impact of havig cacer is t apparet util after treatmet is over. May post-treatmet survivors fid themselves reevaluatig their lives takig stock of their persoal relatioships, professioal goals, ad what gives their life meaig ad fulfillmet. Give yourself time to adjust to these chages ad to reflect o what you ve bee through, recogize what you ve leared about yourself, ad idetify chages you might wat to make i your life. You may fid it helpful to joi a support group for posttreatmet survivors (CacerCare offers several). These groups give members a chace to discuss commo cocers such as livig with ucertaity, ligerig side effects, ad goig back to work. 17 Ask CacerCare Versio B mc sr eg rlg 020909.idd 17 2/9/2009 1:53:44 PM
Resources The followig is a list of recommeded resources o several of the topics covered i this booklet. This list icludes oly a few of the may orgaizatios available to help you. For additioal resources, cotact CacerCare at 1-800-813-HOPE (4673). MEDICAL INFORMATION America Cacer Society 1-800-227-2345 www.cacer.org Cacer.Net Patiet website of the America Society of Cliical Ocology www.cacer.et Natioal Cacer Istitute Cacer Iformatio Service 1-800-422-6237 www.cacer.gov Natioal Comprehesive Cacer Network 1-888-909-6226 www.cc.org couselig ad support groups CacerCare 1-800-813-HOPE (4673) www.cacercare.org 18 Ask CacerCare Versio B mc sr eg rlg 020909.idd 18 2/9/2009 1:53:44 PM
ASK CANCERCARE Cacer Hope Network (oe-to-oe buddy program) 1-877-467-3638 www.cacerhopeetwork.org The Welless Commuity 1-888-793-9355 www.thewellesscommuity.org helping CHILDREN CacerCare for Kids 1-800-813-HOPE (4673) www.cacercare.org Childre s Treehouse Foudatio 1-303-322-1202 www.childrestreehousefd.org Kids Koected 1-800-899-2866 www.kidskoected.org EMPLOYMENT AND LEGAL RIGHTS CacerCare 1-800-813-HOPE (4673) www.cacercare.org Natioal Partership for Wome & Families 1-202-986-2600 www.atioalpartership.org 19 Ask CacerCare Versio B mc sr eg rlg 020909.idd 19 2/9/2009 1:53:44 PM
Patiet Advocate Foudatio 1-800-532-5274 www.patietadvocate.org POST-TREATMENT SURVIVORSHIP CacerCare 1-800-813-HOPE (4673) www.cacercare.org LiveStrog SurvivorCare 1-866-467-7205 www.livestrog.org Natioal Coalitio for Cacer Survivorship 1-888-650-9127 www.caceradvocacy.org 20 Ask CacerCare Versio B mc sr eg rlg 020909.idd 20 2/9/2009 1:53:45 PM
The iformatio preseted i this patiet booklet is provided for your geeral iformatio oly. It is ot iteded as medical advice ad should ot be relied upo as a substitute for cosultatios with qualified health professioals who are aware of your specific situatio. We ecourage you to take iformatio ad questios back to your idividual health care provider as a way of creatig a dialogue ad partership about your cacer ad your treatmet. All people depicted i the photographs i this booklet are models ad are used for illustrative purposes oly. This booklet was edited ad produced by Elsevier Ocology. 2009 Cacer Care, Ic. All rights reserved. Ask CacerCare cover 020809 eg.idd 3 2/9/2009 1:52:33 PM
With CacerCare, the differece comes from: Help ad Hope 1-800-813-HOPE (4673) www.cacercare.org Ask CacerCare cover 020809 eg.idd 4 2/9/2009 1:52:34 PM