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Breast Cancer – Patient Materials Screening Common Breast Changes: Things to Know This 8-page publication answers the most common question women have: “What if my mammogram shows something abnormal?” Its message is that not all breast changes mean cancer, and describes common conditions, test results and follow-up care. Brochures can be requested by calling NCI at 1800-4-CANCER. The document can also be viewed and printed from: http://www.cancer.gov/cancertopics/Common-Breast-Changes-PDF Breast Cancer Screening: PDQ Fact Sheet for Patients This online resource gives a definition of screening, breast cancer and three ways to find breast cancer (mammogram, clinical breast exam and breast self-exam). It can be viewed and printed from: http://www.cancer.gov/cancertopics/pdq/screening/breast/patient Abnormal Results & Biopsy Information Understanding Breast Changes: Health Guide for Women This 42-page booklet is designed for women who prefer more detailed information, or those women having biopsies. It describes types of changes that are not cancer, abnormal mammogram results, follow-up testing, types of biopsies and results, follow-up care, diagnosis of cancer and getting support. Brochures can be requested by calling NCI at 1-800-4-CANCER. The document can also be viewed and printed from: http://www.cancer.gov/cancertopics/understanding-breast-changes Diagnosis of Cancer What You Need to Know About Breast Cancer This 73-page booklet provides a thorough overview of breast cancer, from risk factors and screening, to cancer diagnosis, staging, treatment and follow-up care. Also provides a dictionary of common medical terms the patient will encounter. Brochures can be requested by calling NCI at 1-800-4-CANCER. The document can also be viewed and printed from: http://www.cancer.gov/pdf/WYNTK/WYNTK_breast.pdf Treatment Decisions Breast Cancer Treatment: PDQ Fact Sheet for Patients This online resource gives general breast cancer information, staging, an overview of treatment options, including inflammatory and recurrent breast cancer. It can be viewed and printed from: http://www.cancer.gov/cancertopics/pdq/treatment/breast/patient Surgery Choices for Women With Early-Stage Breast Cancer This 15-page booklet, available in both English and Spanish, uses a decision aid format and outlines 5 steps to help patients sort through complex questions pertaining to their specific cancer type and treatment options. It compares the three treatment options and answers common questions about breast-sparing surgery, mastectomy and mastectomy with breast reconstruction surgery. Brochures can be requested by calling NCI at 1-800-4-CANCER. The document can also be viewed and printed from: http://www.cancer.gov/cancertopics/breast-cancer-surgery-choices (English version) http://www.cancer.gov/images/Documents/ded01a2c-b764-462d-83961796e9bd5b12/SpBrCancer.pdf (Spanish version) Quick Reference: Doctors the patient will likely see for treatment Breast-Sparing Surgery Oncologist Surgeon Radiation oncologist Mastectomy Surgery Oncologist Surgeon Radiation oncologist Mastectomy and Breast Reconstruction Surgery Oncologist Surgeon Radiation oncologist Reconstructive plastic surgeon Breast Cancer – National Organizations Federal or National Organizations National Cancer Institute Cancer Information Service Gives up-to-date information on cancer to patients and their families, health professionals, and the general public. Information specialists explain scientific information in plain language and respond in English or Spanish. Toll-free: TTY: Chat online: 1-800-4-CANCER (1-800-422-6237) 1-800-332-8615 www.cancer.gov click on "Need Help?" then "LiveHelp" www.cancer.gov The National Cancer Institute's Web site contains information about cancer causes and prevention, screening and diagnosis, treatment, symptom management, and survivorship; clinical trials; statistics, funding, and training; and the NCI's programs and research activities. National Research Center for Women & Families Provides information, such as questions to ask your doctor and treatment options; geographic, financial, and personal issues influencing breast cancer surgery; and advantages and risks of breast reconstruction surgery. Web site: www.center4research.org Office on Women's Health National Women's Health Information Center Provides information about breast cancer, including questions to ask your doctor. Web site: www.4women.gov Agency for Healthcare Research and Quality (AHRQ) Provides information on breast cancer screening and prevention. Web site: www.ahrq.gov/clinic National Lymphedema Information National Lymphedema Network Provides education and guidance to lymphedema patients, health care professionals, and the general public by disseminating information on the prevention and management of primary and secondary lymphedema. 510-208-3200 Phone: Toll-free: 1-800-541-3259 E-mail: Web site: [email protected] www.lymphnet.org Breast Reconstruction Surgery and Implants American Cancer Society Phone: Toll-free: Web site: 404-320-3333 1-800-227-2345 (I-800-ACS-2345) www.cancer.org National Library of Medicine Resources about breast reconstruction. www.nlm.nih.gov/medlineplus/breastreconstruction.html U.S. Food and Drug Administration Center for Devices and Radiological Health Information about breast implants. www.fda.gov/cdrh/breastimplants Pain Control National Cancer Institute Cancer Information Service Gives up-to-date information on cancer to patients and their families, health professionals, and the general public. Information specialists explain scientific information in plain language and respond in English or Spanish. Toll-free: TTY: Chat online: 1-800-4-CANCER (1-800-422-6237) 1-800-332-8615 www.cancer.gov click on "Need Help?" then "LiveHelp" www.cancer.gov The National Cancer Institute's Web site contains information about cancer causes and prevention, screening and diagnosis, treatment, symptom management, and survivorship; clinical trials; statistics, funding, and training; and the NCI's programs and research activities. Cervical Cancer – Patient Materials Screening Cervical Cancer: What You Can Do To Protect Yourself This 38-page booklet, written in both Spanish and English, contains basic facts about cervical cancer, causes, when to have a Pap test and payment information. Brochures can be requested by calling NCI at 1-800-4-CANCER. The document can also be viewed and printed from: http://www.cancer.gov/cancertopics/cervical-cancerwhat-you-can-do Cervical Cancer: What Vietnamese Women Should Know This 19-page booklet, written in both Vietnamese and English, contains basic facts about cervical cancer, causes, when to have a Pap test and payment information. Brochures can be requested by calling NCI at 1-800-4-CANCER. The document can also be viewed and printed from: http://www.cancer.gov/cancertopics/cervical-screeningvietnamese.pdf Cervical Cancer Screening: PDQ Fact Sheet for Patients This online resource gives basic information on cervical cancer screening and Pap testing. It can be viewed and printed from: http://www.cancer.gov/cancertopics/pdq/screening/cervical/patient Abnormal Results & Biopsy Information Understanding Cervical Changes: Health Guide for Women This 24-page booklet is designed for women who prefer more detailed information, or those women having biopsies. It describes types of changes that are not cancer, abnormal Pap test results, follow-up testing, types of biopsies and results, follow-up care, diagnosis of cancer and getting support. Brochures can be requested by calling NCI at 1-800-4-CANCER. The document can also be viewed and printed from: http://www.cancer.gov/cancertopics/understandingcervicalchanges Diagnosis of Cancer What You Need to Know About Cervical Cancer This 55-page booklet provides a thorough overview of cervical cancer, from risk factors and screening, to cancer diagnosis, staging, treatment and follow-up care. Also provides a dictionary of common medical terms the patient will encounter. Brochures can be requested by calling NCI at 1-800-4-CANCER. The document can also be viewed and printed from: http://www.cancer.gov/cancertopics/wyntk/cervix Treatment Decisions Cervical Cancer Treatment: PDQ Fact Sheet for Patients This online resource gives general cervical cancer information, staging and an overview of treatment options, including recurrent cervical cancer. It can be viewed and printed from: http://www.cancer.gov/cancertopics/pdq/treatment/cervical/patient Cervical Cancer – National Organizations [need more info from main cancer.gov list here] Prostate Cancer – Patient Materials Abnormal Results & Biopsy Information Understanding Prostate Changes: A Health Guide for Men This 21-page booklet serves as an introduction to the prostate and its function, common non-cancerous conditions, information about prostate cancer, its symptoms and testing for prostate cancer, including biopsy. Brochures can be requested by calling NCI at 1-800-4-CANCER. The document can also be viewed and printed from: http://www.cancer.gov/cancertopics/understanding-prostate-changes Diagnosis of Cancer What You Need To Know About Prostate Cancer This 55-page booklet provides a thorough overview of prostate cancer, from risk factors and screening, to cancer diagnosis, staging, treatment and follow-up care. Also provides a dictionary of common medical terms the patient will encounter. Brochures can be requested by calling NCI at 1-800-4-CANCER. The document can also be viewed and printed from: http://www.cancer.gov/cancertopics/wyntk/prostate Treatment Decisions Prostate Cancer Treatment: PDQ Fact Sheet for Patients This online resource gives general prostate cancer information, staging and an overview of treatment options, including recurrent prostate cancer. It can be viewed and printed from: http://www.cancer.gov/cancertopics/pdq/treatment/prostate/patient Treatment Choices for Men With Early-Stage Prostate Cancer This 24-page booklet is a decision aid to help men sort through questions pertaining to early-stage prostate cancer and treatment. It compares the three treatment options (watchful waiting, surgery and radiation) and answers common questions about what happens during treatment, side effects and risks. Also gives questions to ask and tips for talking with the medical team. Brochures can be requested by calling NCI at 1-800-4-CANCER. The document can also be viewed and printed from: http://www.cancer.gov/cancertopics/prostate-cancer-treatment-choices Radiation Therapy and You: A Guide to Self-Help During Cancer Treatment This 68-page booklet describes what to expect with all types of radiation therapy (internal and external) and information on managing side effects. . Brochures can be requested by calling NCI at 1-800-4-CANCER. The document can also be viewed and printed from: http://www.cancer.gov/PDF/69363e22-2c64-4880-b5b0f184a15740fb/radiation.pdf Types of Doctors Below is a list of types of doctors who treat or specialize in prostate cancer: Medical oncologist. A doctor who specializes in diagnosing and treating cancer using chemotherapy, hormonal therapy, and biological therapy. This doctor is often the main health care provider for people with cancer. He or she can also give supportive care and may coordinate treatment given by other specialists. Pathologist. A doctor who finds diseases by studying cells and tissue under a microscope. Although you won't personally interact with this doctor, he or she writes up a pathology report, which contains the cancer information from your biopsy or prostate surgery. Radiation oncologist. A doctor who specializes in using radiation to treat cancer. Urologic oncologist. A doctor who specializes in treating cancers of the urinary system. Urologist. A doctor who specializes in diseases of the male urinary system and sex organs. Prostate Cancer – National Organizations National Cancer Institute You can find out more from these free NCI services: Cancer Information Service (CIS) Toll-free ...................1-800-4-CANCER (1-800-422-6237) TTY ............................1-800-332-8615 NCI Online ................www.cancer.gov Chat Online ..............www.cancer.gov/cis Clinical Trials ...........www.cancer.gov/search/clinicaltrials Other Federal Resources Medicare For more information about Medicare benefits, contact: Toll-free ...................1-800-MEDICARE (1-800-633-4227) Online ......................www.medicare.gov National Kidney and Urologic Diseases Information Clearinghouse Toll-free ...................1-800-891-5390 Online ......................www.kidney.niddk.nih.gov Other Organizations American Cancer Society Man-to-Man Program This support group of the American Cancer Society offers advice on coping with illness and the side effects of treatment, along with newsletter archives and a directory of prostate cancer publications. Call toll-free 1-800-ACS-2345 (1-800-227-2345) or visit online at www.cancer.org. American Urological Association Foundation The AUA Foundation supports research; provides education to patients, the general public, and health professionals; and offers patient support services for those who have or may be at risk for a urologic disease or disorder. The Foundation provides information on urologic diseases and dysfunctions, including prostate cancer treatment options, bladder health, and sexual function. It also offers prostate cancer support groups (Prostate Cancer Network). Some Spanish language publications are available. Call toll-free 1-800-828-7866 or visit online at www.afud.org. CancerCare CancerCare is a national nonprofit agency that offers free support, information, financial assistance, and practical help to people with cancer and their loved ones. Services are provided by oncology (cancer) social workers and are available in person, over the telephone, and through the agency's Web site. A section of the CancerCare Web site and some publications are available in Spanish, and staff can respond to calls and e-mail in Spanish. Call toll-free 1-800-813-HOPE (1-800-813-4673) or visit online at www.cancercare.org. Fertile Hope Fertile Hope is a national organization that provides reproductive information, support, and hope to cancer patients whose medical treatments present the risk of infertility. The organization offers fertility preservation financial assistance options for patients. Call toll-free 1-888-994-HOPE (1888-994-4673) or visit online at www.fertilehope.org. Prostate Cancer Foundation The Prostate Cancer Foundation is a nonprofit organization that provides funding for research projects to improve methods of diagnosing and treating prostate cancer. It also offers printed resources for prostate cancer survivors and their families. The mission of the Prostate Cancer Foundation is to find better treatments and a cure for prostate cancer. Call toll-free 1-800-757CURE (1-800-757-2873) or visit online at www.prostatecancerfoundation.org. Us TOO International Us TOO International Prostate Cancer Education and Support Network is a non-profit education and support group organization with more than 325 chapters throughout the world. It provides men and their families with fellowship, peer counseling, and timely, personalized, unbiased, and reliable information about prostate cancer, enabling informed choices about detection, treatment options, and quality of life after treatment. Call toll-free 1-800-80-USTOO (1-800-808-7866) or visit online at www.ustoo.org. The Wellness Community The Wellness Community gives free psychological and emotional support to cancer patients and their families. It offers support groups facilitated by licensed therapists, stress reduction and cancer education workshops, nutrition guidance, exercise sessions, and social events. Call tollfree 1-888-793-WELL (1-888-793-9355) or visit online at www.thewellnesscommunity.org. Colorectal – Patient Materials [need to layout yet] http://www.cancer.gov/cancertopics/pdq/treatment/colon/patient http://www.cancer.gov/cancertopics/pdq/treatment/rectal/patient http://www.cancer.gov/cancertopics/pdq/screening/colorectal/patient http://www.cancer.gov/cancertopics/wyntk/colon-and-rectum http://nihseniorhealth.gov/colorectalcancer/printerFriendly.html?allTopics=entireTopic&images =Include+images&print=Confirm+print+selection (NIH Senior Health) Colorectal Cancer – National Organizations Coping With Cancer – General Resources [this section has to be worked on yet to show the cover of the pub, brief description and ordering info; also, we need to discuss how inclusive we want this to be?] Fatigue Fatigue (PDQ®) [ patient ] [ health professional ] Pain Pain (PDQ®) [ patient ] [ health professional ] Pain Control: A Guide for People with Cancer and Their Families Understanding Cancer Pain Other Complications/Side Effects Lymphedema (PDQ®) [ patient ] [ health professional ] Nausea and Vomiting (PDQ®) [ patient ] [ health professional ] Sexuality and Reproductive Issues (PDQ®) [ patient ] [ health professional ] Sleep Disorders (PDQ®) [ patient ] [ health professional ] Nutritional Concerns Nutrition in Cancer Care (PDQ®) [ patient ] [ health professional ] Eating Hints for Cancer Patients: Before, During, and After Treatment Emotional Concerns Anxiety Disorder (PDQ®) [ patient ] [ health professional ] Depression (PDQ®) [ patient ] [ health professional ] Normal Adjustment and the Adjustment Disorders (PDQ®) [ patient ] [ health professional ] Post-traumatic Stress Disorder (PDQ®) [ patient ] [ health professional ] Spirituality in Cancer Care (PDQ®) [ patient ] [ health professional ] Taking Time: Support for People with Cancer and the People Who Care About Them Treatment-Related Issues Chemotherapy and You: A Guide to Self-Help During Cancer Treatment Helping Yourself During Chemotherapy Radiation Therapy and You: A Guide to Self-Help During Cancer Treatment Complementary and Alternative Medicine When Cancer Returns Clinical Trials Information Understanding Supportive Care Trials Supportive Care Trial Results Search for Clinical Trials Information for Caregivers and Loved Ones When Someone You Love Is Being Treated for Cancer When Your Parent Has Cancer: A Guide for Teens When Your Brother or Sister Has Cancer: A Guide for Teens Facing Forward: When Someone You Love Has Completed Cancer Treatment When Someone You Love Has Advanced Cancer: Support for Caregivers General Cancer Resources Federal Agencies National Cancer Institute Provides current information on cancer prevention, screening, diagnosis, treatment, genetics, and supportive care. Lists clinical trials and specific cancer topics in NCI's Physician Data Query (PDQ®) database. Web Site: www.cancer.gov Cancer Information Service Answers questions about cancer, clinical trials, and cancer-related services and helps users find information on the NCI Web site. Provides NCI printed materials. Phone: 1-800-4-CANCER (1-800-422-6237) TTY: 1-800-332-8615 Web Site: www.cancer.gov/cis Chat online: Click on "LiveHelp." Administration on Aging Provides information, assistance, individual counseling, organization of support groups, caregiver training, respite care, and supplemental services. Phone: 1-202-619-0724 TTY: 1-800-877-8339 Web Site: www.aoa.gov Centers for Medicare and Medicaid Services Provides information for consumers about patient rights, prescription drugs, and health insurance issues, including Medicare and Medicaid. Phone: 1-800-MEDICARE (1-800-633-4227) Web Site: www.medicare.gov (for Medicare information) or www.cms.hhs.gov (other information) Equal Employment Opportunity Commission Provides fact sheets about job discrimination, protections under the Americans With Disabilities Act, and employer responsibilities. Coordinates investigations of employment discrimination. Phone: 1-800-669-4000 TTY: 1-800-669-6820 Web Site: www.eeoc.gov National Association of Area Agencies on Aging Eldercare Locator The Eldercare Locator is a nationwide directory assistance service designed to help older persons and caregivers find local resources for support. Areas of support include transportation, meals, home care, housing alternatives, legal issues, and social activities. Phone: 1-800-677-1116 Web Site: www.eldercare.gov U.S. Department of Labor Office of Disability Employment Policy Provides fact sheets on a variety of disability issues, including discrimination, workplace accommodation, and legal rights. Phone: 1-866-633-7365 TTY: 1-877-889-5627 Web Site: www.dol.gov/odep Private Organizations Aging With Dignity Provides information and materials regarding advance directives. You can order the document Five Wishes, which states your end of life decisions for your health care team, and friends and family members. Toll-Free: 1-888-5WISHES (1-888-594-7437) Visit: www.agingwithdignity.org American Cancer Society National Cancer Information Center Provides a variety of cancer information and support to patients, families, and caregivers. Also supports research, community education, and advocacy and public policy issues. Phone: 1-800-ACS-2345 (1-800-227-2345) Web Site: www.cancer.org CancerCare Offers free support, information, financial assistance, and practical help to people with cancer and their loved ones. Phone: 1-800-813-HOPE (1-800-813-4673) Web Site: www.cancercare.org Cancer Hope Network Cancer Hope Network matches patients and families with trained volunteers who have recovered from a similar cancer experience. Phone: 1-877-HOPENET (1-877-467-3638) Web Site: www.cancerhopenetwork.org Family Caregiver Alliance Family Caregiver Alliance addresses the needs of families and friends who provide long-term care at home. Phone: 1-800-445-8106 Web Site: www.caregiver.org Fertile Hope Fertile Hope provides reproductive information, support, and hope to cancer patients who are at risk for treatment-related infertility. Phone: 1-888-794-HOPE (4673) Web Site: www.fertilehope.org Gilda's Club, Inc. Gilda's Club provides social and emotional support for cancer patients and their families and friends. Phone: 1-888-GILDA-4-U (1-888-445-3248) Web Site: www.gildasclub.org Lance Armstrong Foundation The Lance Armstrong Foundation seeks to inspire and empower people living with, through, and beyond cancer to live strong. It provides education, advocacy, public health and research programs. Phone: 1-512-236-8820 (general number)2 1-866-235-7205 (LIVESTRONG SurvivorCare Program) Web Site: www.livestrong.org NeedyMeds The NeedyMeds Web site lists medicine assistance programs available from drug companies. Web Site: www.needymeds.com NOTE: Usually, patients cannot apply directly to these programs. Ask a doctor, nurse, or social worker to contact them on behalf of your loved one. National Coalition for Cancer Survivorship Provides information on cancer support, employment, financial and legal issues, advocacy, and related issues. Phone: 1-877-NCCS YES (1-877-622-7937) Web Site: www.canceradvocacy.org National Family Caregivers Association (NFCA) NFCA provides information, education, support, public awareness, and advocacy for caregivers. Phone: 1-800-896-3650 Web Site: www.nfcacares.org Patient Advocate Foundation Offers education, legal counseling, and referrals concerning managed care, insurance, financial issues, job discrimination, and debt crisis matters. Phone: 1-800-532-5274 Web Site: www.patientadvocate.org The Well Spouse Foundation The foundation provides support to wives, husbands, and partners of chronically ill and/or disabled persons. Phone: 1-800-838-0879 Web Site: www.wellspouse.org The Wellness Community Provides free psychological and emotional support to cancer patients and their families. Phone: 1-888-793-WELL (1-888-793-9355) Web Site: www.wellness-community.org National Organizations That Offer Services to People With Cancer and Their Families [taken from cancer.gov list – some orgs need weeded out, some should probably also appear under each organ site – we need to discuss how we’d like this to be, before going further] People with cancer and their families sometimes need assistance coping with the emotional as well as the practical aspects of their disease. This fact sheet includes some of the national nonprofit organizations that provide this type of support. It is not intended to be a comprehensive listing of all organizations that offer these services in the United States, nor does inclusion of any particular organization imply endorsement by the National Cancer Institute (NCI), the National Institutes of Health, or the Department of Health and Human Services. The intent of this fact sheet is to provide information useful to individuals nationally. For that reason, it does not include the many local groups that offer valuable assistance to patients and their families in individual states or cities. Organization: Address: American Brain Tumor Association (ABTA) 2720 River Road Des Plaines, IL 60018 Telephone: 847–827–9910 1–800–886–2282 (1–800–886–ABTA) E-mail: [email protected] Internet Web site: http://www.abta.org The ABTA funds brain tumor research and provides information to help patients make educated decisions about their health care. The ABTA offers printed materials about the research and treatment of brain tumors, and provides listings of physicians, treatment facilities, and support groups throughout the country. A limited selection of Spanish-language publications is available. Organization: American Cancer Society (ACS) Address: 1599 Clifton Road, NE. Atlanta, GA 30329–4251 Telephone: 404–320–3333 1–800–227–2345 (1–800–ACS–2345) Internet Web site: http://www.cancer.org The ACS is a voluntary organization that offers a variety of services to patients and their families. The ACS also supports research, provides printed materials, and conducts educational programs. Staff can accept calls and distribute publications in Spanish. A local ACS unit may be listed in the white pages of the telephone directory under “American Cancer Society.” American Cancer Society (ACS) Supported Programs: Cancer Survivors Network® (http://www.acscsn.org) This is both a telephone and Web-based service for cancer survivors, their families, caregivers, and friends. The telephone component (1–877–333–HOPE) provides survivors and families access to pre-recorded discussions. The Web-based component offers live online chat sessions, virtual support groups, pre-recorded talk shows, and personal stories. I Can Cope I Can Cope is a patient education program that is designed to help patients, families, and friends cope with the day-to-day issues of living with cancer. Look Good. . .Feel Better® (http://www.lookgoodfeelbetter.org) This program was developed by the Cosmetic, Toiletry, and Fragrance Association Foundation in cooperation with ACS and the National Cosmetology Association. It focuses on techniques that can help people undergoing cancer treatment improve their appearance. The entire program is also available in Spanish. Man to Man (http://www.cancer.org/docroot/ESN/content/ESN_3_1X_Man_to_Man_36.asp?sitearea=S HR) The Man to Man program helps men cope with prostate cancer by providing communitybased education and support to patients and their family members. In addition, Man to Man encourages men and health care professionals to actively consider screening for prostate cancer appropriate to each man’s age and risk for the disease. A major part of the program is the self-help and/or support group. Volunteers organize free monthly meetings where speakers and participants learn about and discuss information about prostate cancer, treatment, side effects, and how to cope with the disease and its treatment. Reach to Recovery The Reach to Recovery Program is a rehabilitation program for men and women who have or have had breast cancer. The program helps breast cancer patients meet the physical, emotional, and cosmetic needs related to their disease and its treatment. Organization: Address: American Institute for Cancer Research (AICR) 1759 R Street, NW. Washington, DC 20009 Telephone: 202–328–7744 1–800–843–8114 E-mail: [email protected] Internet Web site: http://www.aicr.org The AICR provides information about cancer prevention, particularly through diet and nutrition. They offer a toll-free nutrition hotline and funding of research grants. The AICR also has a wide array of consumer and health professional brochures, plus health aids about diet and nutrition and their link to cancer and cancer prevention. The AICR also offers the AICR CancerResource, an information and resource program for cancer patients. A limited selection of Spanish-language publications is available. Organization: American Urological Association Foundation (AUA) Address: Suite 410 1000 Corporate Boulevard Linthicum, MD 21090 Telephone: 410–689–3990 1–800–828–7866 E-mail: Available through the Web site Internet Web site: http://www.afud.org The AUA supports research; provides education to patients, the general public, and health professionals; and offers patient support services for those who have or may be at risk for a urologic disease or disorder. They provide information on urologic disease and dysfunctions, including prostate cancer treatment options, bladder health, and sexual function. They also offer prostate cancer support groups (Prostate Cancer Network). Some Spanish-language publications are available. Organization: Brain Tumor Society Address: Suite 3–H 124 Watertown Street Watertown, MA 02472 Telephone: 617–924–9997 1–800–770–8287 (1–800–770–TBTS) E-mail: [email protected] Internet Web site: http://www.tbts.org The Brain Tumor Society provides information about brain tumors and related conditions for patients and their families. They offer a patient/family telephone network, educational publications, funding for research projects, and access to support groups for patients. Organization: Address: CancerCare, Inc. National Office 275 Seventh Avenue New York, NY 10001 Telephone: 212–712–8080 1–800–813–4673 (1–800–813–HOPE) 212–712–8400 (administration) E-mail: [email protected] Internet Web site: http://www.cancercare.org CancerCare is a national nonprofit agency that offers free support, information, financial assistance, and practical help to people with cancer and their loved ones. Services are provided by oncology social workers and are available in person, over the telephone, and through the agency’s Web site. CancerCare’s reach also extends to professionals—providing education, information, and assistance. A section of the CancerCare Web site and some publications are available in Spanish, and staff can respond to calls and e-mails in Spanish. CancerCare also operates the AVONCares Program for Medically Underserved Women, which provides financial assistance to low-income, under- and uninsured, underserved women throughout the country who need supportive services (transportation, child care, and home care) related to the treatment of breast and cervical cancers. Organization: Cancer Hope Network Address: Two North Road Chester, NJ 07930 Telephone: 1–877–467–3638 (1–877–HOPENET) E-mail: [email protected] Internet Web site: http://www.cancerhopenetwork.org The Cancer Hope Network provides individual support to cancer patients and their families by matching them with trained volunteers who have undergone and recovered from a similar cancer experience. Such matches are based on the type and stage of cancer, treatments used, side effects experienced, and other factors. Organization: Cancer Information and Counseling Line (CICL) (a service of the AMC Cancer Research Center) Address: 1600 Pierce Street Denver, CO 80214 Telephone: 1–800–525–3777 E-mail: [email protected] Internet Web site: http://www.amc.org/html/info/h_info_cicl.html The CICL, part of the Psychosocial Program of the AMC Cancer Research Center, is a toll-free telephone service for cancer patients, their family members and friends, cancer survivors, and the general public. Professional counselors provide up-to-date medical information, emotional support through short-term counseling, and resource referrals to callers nationwide between the hours of 8:30 a.m. and 5:00 p.m. Mountain Standard Time, Monday through Friday. Individuals may also submit questions about cancer and request resources via e-mail. Organization: Address: The Cancer Project Suite 400 5100 Wisconsin Avenue Washington, DC 20016 Telephone: 202–244–5038 E-mail: [email protected] Internet Web site: http://www.CancerProject.org The Cancer Project provides comprehensive educational materials, conducts clinical research studies, and publicizes the value of a healthy diet in cancer prevention and survival. A limited selection of Spanish-language publications is available. Organization: Address: Cancer Research and Prevention Foundation Suite 500 1600 Duke Street Alexandria, VA 22314 Telephone: 703–836–4412 1–800–227–2732 (1–800–227–CRFA) E-mail: [email protected] Internet Web site: http://www.preventcancer.org The Cancer Research and Prevention Foundation seeks to prevent cancer by funding research and providing educational materials on early detection and nutrition. Organization: Address: Candlelighters® Childhood Cancer Foundation (CCCF) Post Office Box 498 Kensington, MD 20895–0498 Telephone: 301–962–3520 1–800–366–2223 (1–800–366–CCCF) E-mail: [email protected] Internet Web site: http://www.candlelighters.org The CCCF is a nonprofit organization that provides information, peer support, and advocacy through publications, an information clearinghouse, and a network of local support groups. A financial aid list is available that lists organizations to which eligible families may apply for assistance. Organization: Children’s Brain Tumor Foundation (CBTF) Address: Suite 1301 274 Madison Avenue New York, NY 10016 Telephone: 212–448–9494 1–866–228–4673 (1–866–228–HOPE) E-mail: [email protected] Internet Web site: http://www.cbtf.org The CBTF is a nonprofit organization that funds research and provides support, education, and advocacy for children with brain and spinal cord tumors and their families. It also provides educational materials (including a Spanish-language publication) and cosponsors conferences and seminars for families, survivors, and health care professionals that offer the latest information about research, treatments, and strategies for living. Through CBTF’s Parent-to-Parent Network, families share their experiences with others in similar situations. Organization: Address: Children’s Hospice International® Suite 230 901 North Pitt Street Alexandria, VA 22314 Telephone: 703–684–0330 1–800–242–4453 (1–800–2–4–CHILD) E-mail: [email protected] Internet Web site: http://www.chionline.org Children’s Hospice International provides a network of support for dying children and their families. It serves as a clearinghouse for research programs and support groups, and offers educational materials and training programs on pain management and the care of seriously ill children. Organization: Colon Cancer Alliance (CCA) Address: 175 Ninth Avenue New York, NY 10011 Telephone: 212–627–7451 (main office) 1–877–422–2030 (helpline) E-mail: [email protected] Internet Web site: http://www.ccalliance.org The CCA is an organization of colon and rectal cancer survivors, their families, caregivers, and the medical community. The Alliance provides patient support and public education, supports research, and advocates for the needs of cancer patients and their families. The CCA offers information including brochures and booklets, a newsletter, a toll-free helpline, and weekly online chats. It also offers the CCA Buddies Network, which matches survivors and caregivers with others in a similar situation for one-on-one emotional support. The CCA has volunteers who speak Spanish. Organization: Address: Colorectal Cancer Network Post Office Box 182 Kensington, MD 20895–0182 Telephone: 301–879–1500 E-mail: [email protected] Internet Web site: http://www.colorectal-cancer.net The Colorectal Cancer Network is a national advocacy group that raises public awareness about colorectal cancer and provides support services to colorectal cancer patients and their families, friends, and caregivers. Services include support groups; an Internet chat room; e-mail listservs for survivors, caregivers, and advocates; hospital visitation programs; and a “One on One” service that connects newly diagnosed individuals with long-term survivors. The Network also provides literature on screening, diagnosis, treatment, and supportive care for colorectal cancer. Organization: CureSearch Address: Suite 600 4600 East West Highway Bethesda, MD 20814–3457 Telephone: 1–800–458–6223 E-mail: [email protected] Internet Web site: http://www.curesearch.org CureSearch is a partnership between the Children’s Oncology Group and the National Childhood Cancer Foundation. CureSearch provides treatment information and support resources for patients, families, and health professionals. A searchable Resource Directory is available on their Web site (http://www.curesearch.org/resources/) that lists local, national, and international organizations that offer resources for helping community members, parents, and children dealing with childhood cancer. Users enter in their ZIP code on the Web site to locate local and regional organizations. Organization: ENCOREPlus® Address: YWCA of the USA Office of Women’s Health Advocacy Suite 700 1015 18th Street, NW. Washington, DC 20036 Telephone: 202–467–0801 1–800–953–7587 (1–800–95E–PLUS) E-mail: [email protected] Internet Web site: http://www.ywca.org ENCOREPlus is the YWCA’s discussion and exercise program for women who have had breast cancer surgery. It is designed to help restore physical strength and emotional well-being. A local branch of the YWCA, listed in the telephone directory, can provide more information about ENCOREPlus. Organization: Fertile Hope Address: Post Office Box 624 New York, NY 10014 Telephone: 212–242–6798 1–888–994–4673 (1–888–994–HOPE) E-mail: [email protected] Internet Web site: http://www.fertilehope.org Fertile Hope is a national organization that provides reproductive information, support, and hope to cancer patients whose medical treatments present the risk of infertility. They also offer fertility preservation financial assistance options for patients. Organization: Address: Gilda’s Club® Worldwide Suite 1402 322 Eighth Avenue New York, NY 10001 Telephone: 1–888–445–3248 (1–888–GILDA–4–U) E-mail: [email protected] Internet Web site: http://www.gildasclub.org Gilda’s Club Worldwide works with communities to start and maintain local Gilda’s Clubs, which provide social and emotional support to cancer patients, their families, and friends. Lectures, workshops, support and networking groups, special events, and children’s programs are offered. Services are available in Spanish. Organization: Hospice Education Institute Address: Three Unity Square Post Office Box 98 Machiasport, ME 04655–0098 Telephone: 207–255–8800 1–800–331–1620 E-mail: [email protected] Internet Web site: http://www.hospiceworld.org The Hospice Education Institute serves a wide range of individuals and organizations interested in improving and expanding hospice and palliative care throughout the United States and around the world. The Institute works to inform, educate, and support people seeking or providing care for the dying and the bereaved. HOSPICELINK, a service of the Institute, maintains a computerized database and up-to-date directory of all hospice and palliative care programs in the United States. HOSPICELINK helps patients and their families find hospice and palliative care programs, and provides general information about the principles and practices of good hospice and palliative care. Organization: Address: International Association of Laryngectomees (IAL) Post Office Box 691060 Stockton, CA 95269–1060 Telephone: 1–866–425–3678 (1–866–IAL–FORU) 209–472–0516 E-mail: [email protected] Internet Web site: http://www.larynxlink.com The IAL assists people who have lost their voice as a result of cancer. It provides information on the skills needed by laryngectomees and works toward total rehabilitation of patients. Organization: Address: International Myeloma Foundation (IMF) Suite 206 12650 Riverside Drive North Hollywood, CA 91607–3421 Telephone: 818–487–7455 1–800–452–2873 (1–800–452–CURE) E-mail: [email protected] Internet Web site: http://www.myeloma.org The IMF supports education, treatment, and research for multiple myeloma. They provide a tollfree hotline, seminars, and educational materials for patients and their families. Although the IMF does not sponsor support groups, they do keep a list of other organizations’ support groups and provide information on how to start a support group. A section of the IMF Web site and some printed materials are available in Spanish. Organization: International Waldenstrom’s Macroglobulinemia Foundation (IWMF) Address: 3932 D Swift Road Sarasota, FL 34231 Telephone: 941–927–4963 E-mail: [email protected] Internet Web site: http://www.iwmf.com The IWMF provides encouragement and support to people with Waldenstrom’s macroglobulinemia (WM) and their families, and works to increase awareness of issues related to WM. The IWMF also encourages and supports increased research toward finding more effective treatments and ultimately a cure. The IWMF offers publications, including a quarterly newsletter, The IWMF Torch, and bulletins. Through its Internet Talklist, regional support groups, and telephone Lifeline Project, the Foundation also helps people with WM contact others with this disease. People may also participate in the IWMF’s annual Educational Forum to hear prominent researchers and other speakers, and to share their experiences with other participants. Organization: Kidney Cancer Association Address: Suite 203 1234 Sherman Avenue Evanston, IL 60202–1375 Telephone: 847–332–1051 1–800–850–9132 E-mail: [email protected] Internet Web site: http://www.curekidneycancer.org The Kidney Cancer Association supports research, offers printed materials about the diagnosis and treatment of kidney cancer, sponsors support groups, and provides physician referral information. Organization: Lance Armstrong Foundation (LAF) Address: Post Office Box 161150 Austin, TX 78716–1150 Telephone: 512–236–8820 Internet Web site: http://www.laf.org The LAF, a nonprofit organization founded by cancer survivor and cyclist Lance Armstrong, provides resources and support services to people diagnosed with cancer and their families. The LAF’s services include Cycle of Hope, a national cancer education campaign for people with cancer and those at risk for developing the disease, and the Cancer Profiler, a free interactive treatment decision support tool. The LAF also provides scientific and research grants for the better understanding of cancer and cancer survivorship. Organization: The Leukemia and Lymphoma Society Address: 1311 Mamaroneck Avenue White Plains, NY 10605–5221 Telephone: 914–949–5213 1–800–955–4572 E-mail: [email protected] Internet Web site: http://www.leukemia-lymphoma.org The goal of The Leukemia and Lymphoma Society is to find cures for leukemia, lymphoma, Hodgkin’s disease, and multiple myeloma and to improve the quality of life of patients and their families. The Society supports medical research and provides health education materials, as well as the following services: patient financial aid for specified treatment expenses and transportation, family support groups, First Connection (a professionally supervised peer support program), referrals, school re-entry materials, and public and professional education. The Society also provides audiotapes in English and some Spanish-language publications. Organization: Living Beyond Breast Cancer (LBBC) Address: Suite 204 10 East Athens Avenue Ardmore, PA 19003 Telephone: 610–645–4567 1–888–753–5222 (1–888–753–LBBC) (Survivors’ Helpline) E-mail: [email protected] Internet Web site: http://www.lbbc.org The LBBC is an educational organization that aims to empower women living with breast cancer to live as long as possible with the best quality of life. The LBBC offers an interactive message board and information about upcoming conferences and teleconferences on its Web site. In addition, the organization has a toll-free Survivors’ Helpline, a Young Survivors’ Network for women diagnosed with breast cancer who are age 45 or younger, and outreach programs for medically underserved communities. The LBBC also offers a quarterly educational newsletter and a book for African American women living with breast cancer. Organization: Address: The Lung Cancer Alliance (LCA) Suite 800 888 16th Street, NW. Washington, DC 20006 Telephone: 202–463–2080 1–800–298–2436 E-mail: [email protected] Internet Web site: http://www.lungcanceralliance.org LCA offers programs designed to help improve the quality of life of people with lung cancer and their families. Programs include education about the disease, psychosocial support, and advocacy about issues that concern lung cancer survivors. Organization: The Lustgarten Foundation for Pancreatic Cancer Research Address: 1111 Stewart Avenue Bethpage, NY 11714 Telephone: 516–803–1000 1–866–789–1000 E-mail: Available through the Web site Internet Web site: http://www.lustgartenfoundation.org The Lustgarten Foundation funds research, advocates for research funding, and raises awareness of pancreatic cancer diagnosis, treatment, and prevention. The Foundation assists patients and their families in obtaining the most accurate, up-to-date information about pancreatic cancer. It provides educational materials and publications about pancreatic cancer, including a Spanish-language publication. It also has an on-staff social worker available to make referrals to cancer support services. Organization: Address: Lymphoma Foundation of America 814 North Garfield Street Arlington, VA 22201 Telephone: 703–875–9800 (main office) 703–525–2076 (patient hotline) E-mail: [email protected] Internet Web site: http://www.lymphomahelp.org The Lymphoma Foundation of America offers one-on-one counseling, peer counseling, support, referrals for legal advice and second opinions, and treatment information for lymphoma patients, survivors and their families. They also monitor and disseminate information about research into possible causes of lymphoma. Organization: Lymphoma Research Foundation (LRF) For patient services: Address: Suite 207 8800 Venice Boulevard Los Angeles, CA 90034 Telephone: 310–204–7040 1–800–500–9976 E-mail: [email protected] (general information) [email protected] (patient services) Internet Web site: http://www.lymphoma.org/ For research and advocacy: Address: 19thFloor 111 Broadway New York, NY 10006 Telephone: 212–349–2910 1–800–235–6848 E-mail: [email protected] (research program) [email protected] (advocacy) The LRF’s mission is to eradicate lymphoma and serve those touched by this disease. The LRF funds research, advocates for lymphoma-related legislation, and provides educational and support programs for patients and their families. Organization: Address: The Multiple Myeloma Research Foundation (MMRF) Suite 201 51 Locust Avenue New Canaan, CT 06840 Telephone: 203–972–1250 E-mail: [email protected] Internet Web site: http://www.multiplemyeloma.org The MMRF supports research grants and professional and patient symposia on multiple myeloma and related blood cancers. The MMRF publishes a quarterly newsletter, and provides referrals and information packets free of charge to patients and family members. Organization: National Asian Women’s Health Organization (NAWHO) Address: Suite 900 250 Montgomery Street San Francisco, CA 94104 Telephone: 415–989–9747 E-mail: [email protected] Internet Web site: http://www.nawho.org The NAWHO is working to improve the health status of Asian women and families through research, education, leadership, and public policy programs. They have resources for Asian women in English, Cantonese, Laotian, Vietnamese, and Korean. Publications on subjects such as reproductive rights, breast and cervical cancer, and tobacco control are available. Organization: National Bone Marrow Transplant Link (nbmtLink) Address: Suite 108 20411 West 12 Mile Road Southfield, MI 48076 Telephone: 1–800–546–5268 (1–800–LINK–BMT) E-mail: [email protected] Internet Web site: http://www.nbmtlink.org/ The nbmtLink motto is “A second chance at life is our first priority.” The nbmtLink operates a 24hour, toll-free number and provides peer support to bone marrow transplant (BMT) patients and their families. It serves as an information center for prospective BMT patients as well as a resource for health professionals. Educational publications, brochures, and videos are available. Staff can respond to calls in Spanish. Organization: Address: National Brain Tumor Foundation (NBTF) Suite 612 22 Battery Street San Francisco, CA 94111–5520 Telephone: 415–834–9970 1–800–934–2873 (1–800–934–CURE) E-mail: [email protected] Internet Web site: http://www.braintumor.org The NBTF provides patients and their families with information on how to cope with their brain tumors. This organization conducts national and regional conferences, publishes printed materials for patients and family members, provides access to a national network of patient support groups, and assists in answering patient inquiries. The NBTF also awards grants to fund research. Staff are available to answer calls in Spanish, and some Spanish-language publications are available. Organization: National Breast Cancer Coalition (NBCC) Address: Suite 1300 1101 17th Street, NW. Washington, DC 20036 Telephone: 202–296–7477 1–800–622–2838 E-mail: [email protected] Internet Web site: http://www.stopbreastcancer.org The NBCC is a breast cancer advocacy group that educates and trains individuals to become advocates who effectively influence public policies that affect breast cancer research and treatment. It also promotes breast cancer research, and works to improve access to high-quality breast cancer screening, diagnosis, and treatment for all women. Organization: National Coalition for Cancer Survivorship (NCCS) Address: Suite 770 1010 Wayne Avenue Silver Spring, MD 20910–5600 Telephone: 301–650–9127 1–877–622–7937 (1–877–NCCS–YES) E-mail: [email protected] Internet Web site: http://www.canceradvocacy.org The NCCS is a network of groups and individuals that offer support to cancer survivors and their loved ones. It provides information and resources on cancer support, advocacy, and quality-of-life issues. A section of the NCCS Web site and a limited selection of publications are available in Spanish. Organization: Address: Telephone: National Hospice and Palliative Care Organization (NHPCO) Suite 625 1700 Diagonal Road Alexandria, VA 22314 703–837–1500 1–800–658–8898 (helpline) E-mail: [email protected] Internet Web site: http://www.nhpco.org The NHPCO is an association of programs that provide hospice and palliative care. It is designed to increase awareness about hospice services and to champion the rights and issues of terminally ill patients and their family members. They offer discussion groups, publications, information about how to find a hospice, and information about the financial aspects of hospice. Some Spanishlanguage publications are available, and staff are able to answer calls in Spanish. Organization: National Lymphedema Network (NLN) Address: Suite 1111 1611 Telegraph Avenue Oakland, CA 94612–2138 Telephone: 510–208–3200 1–800–541–3259 E-mail: [email protected] Internet Web site: http://www.lymphnet.org The NLN provides education and guidance to lymphedema patients, health care professionals, and the general public by disseminating information on the prevention and management of primary and secondary lymphedema. They provide a toll-free support hotline, a referral service to lymphedema treatment centers and health care professionals, a quarterly newsletter with information about medical and scientific developments, support groups, pen pals, educational courses for health care professionals and patients, and a computer database. Some Spanish-language materials are available. Organization: Address: National Marrow Donor Program® (NMDP) Suite 500 3001 Broadway Street, NE. Minneapolis, MN 55413–1753 Telephone: 612–627–5800 1–800–627–7692 (1–800–MARROW–2) 1–888–999–6743 (Office of Patient Advocacy) Internet Web site: http://www.marrow.org The NMDP, which is funded by the Federal Government, was created to improve the effectiveness of the search for bone marrow donors. It keeps a registry of potential bone marrow donors and provides free information on bone marrow transplantation, peripheral blood stem cell transplant, and unrelated donor stem cell transplant, including the use of umbilical cord blood. The NMDP’s Office of Patient Advocacy assists transplant patients and their physicians through the donor search and transplant process by providing information, referrals, support, and advocacy. Organization: Address: National Ovarian Cancer Coalition (NOCC) Suite 8 500 Northeast Spanish River Boulevard Boca Raton, FL 33431 Telephone: 561–393–0005 1–888–682–7426 (1–888–OVARIAN) E-mail: [email protected] Internet Web site: http://www.ovarian.org The NOCC raises awareness about ovarian cancer and promotes education about this disease. They have a toll-free telephone number for information, referral, support, and education about ovarian cancer. They also offer support groups, a database of gynecologic oncologists searchable by state, and educational materials. A limited selection of Spanish-language publications is available. Organization: Address: National Patient Travel Center (NPTC) Suite One 4620 Haygood Road Virginia Beach, VA 23455 Telephone: 1–800–296–1217 E-mail: [email protected] Internet Web site: http://www.patienttravel.org The NPTC provides the National Patient Travel Helpline, a telephone service that facilitates patient access to charitable medical air transportation resources in the United States. The NPTC also offers information about discounted airline ticket programs for patients and patient escorts, operates Special-Lift and Child-Lift programs, and brings ambulatory outpatients to the United States from many overseas locations. Organization: The Oral Cancer Foundation Address: Number 205 3419 Via Lido Newport Beach, CA 92663 Telephone: 949–646–8000 E-mail: [email protected] Internet Web site: http://www.oralcancerfoundation.org The Oral Cancer Foundation is a nonprofit organization that is dedicated to saving lives through education, research, prevention, advocacy, and support for persons with oral cancer. The Foundation provides an online Oral Cancer Forum, which includes a message board and chat room that connect newly diagnosed patients, family members, and the public. Organization: Address: Ovarian Cancer National Alliance (OCNA) Suite 413 910 17th Street, NW. Washington, DC 20006 Telephone: 202–331–1332 E-mail: [email protected] Internet Web site: http://www.ovariancancer.org The Alliance works to increase public and professional understanding of ovarian cancer and to advocate for research to determine more effective ways to diagnose, treat, and cure this disease. The Alliance distributes informational materials; sponsors an annual advocacy conference for survivors and families; advocates on the issues of cancer to the ovarian cancer community; and works with women’s groups, seniors, and health professionals to increase awareness of ovarian cancer. Organization: Pancreatic Cancer Action Network (PanCAN) Address: Suite 131 2221 Rosecrans Avenue El Segundo, CA 90245 Telephone: 310–725–0025 1–877–272–6226 (1–877–2–PANCAN) E-mail: [email protected] Internet Web site: http://www.pancan.org PanCAN, a nonprofit advocacy organization, educates health professionals and the general public about pancreatic cancer to increase awareness of the disease. PanCAN also advocates for increased funding of pancreatic cancer research and promotes access to and awareness of the latest medical advances, support networks, clinical trials, and reimbursement for care. Organization: Patient Advocate Foundation (PAF) Address: Suite B 753 Thimble Shoals Boulevard Newport News, VA 23606 Telephone: 757–873–6668 1–800–532–5274 E-mail: [email protected] Internet Web site: http://www.patientadvocate.org The PAF provides education, legal counseling, and referrals to cancer patients and survivors concerning managed care, insurance, financial issues, job discrimination, and debt crisis matters. The Patient Assistance Program is a subsidiary of the PAF. It provides financial assistance to patients who meet certain qualifications. The toll-free number is 1–866–512–3861. Organization: Address: Prostate Cancer Foundation 1250 Fourth Street Santa Monica, CA 90401 Telephone: 310–570–4700 1–800–757–2873 (1–800–757–CURE) E-mail: [email protected] Internet Web site: http://www.prostatecancerfoundation.org/ The Prostate Cancer Foundation is a nonprofit organization that provides funding for research projects to improve methods of diagnosing and treating prostate cancer. It also offers printed resources for prostate cancer survivors and their families. The mission of the Prostate Cancer Foundation is to find a cure for prostate cancer. Organization: Address: R. A. Bloch Cancer Foundation, Inc. 4400 Main Street Kansas City, MO 64111 Telephone: 816–932–8453 (816–WE–BUILD) 1–800–433–0464 E-mail: [email protected] Internet Web site: http://www.blochcancer.org The R. A. Bloch Cancer Foundation matches newly diagnosed cancer patients with trained, homebased volunteers who have been treated for the same type of cancer. They also distribute informational materials, including a multidisciplinary list of institutions that offer second opinions. Information is available in Spanish. Organization: Sisters Network®, Inc. Address: Suite 4206 8787 Woodway Drive Houston, TX 77063 Telephone: 713–781–0255 1–866–781–1808 E-mail: [email protected] Internet Web site: http://www.sistersnetworkinc.org Sisters Network seeks to increase local and national attention to the impact that breast cancer has in the African American community. All chapters are run by breast cancer survivors and receive volunteer assistance from community leaders and associate members. The services provided by Sisters Network include individual/group support, community education, advocacy, and research. The national headquarters serves as a resource and referral base for survivors, clinical trials, and private/government agencies. Teleconferences are held to update chapters with the latest information and share new ideas. An educational brochure designed for underserved women is available. In addition, a national African American breast cancer survivors’ newsletter is distributed to survivors, medical facilities, government agencies, organizations, and churches nationwide. Organization: The Skin Cancer Foundation Address: Suite 1403 245 Fifth Avenue New York, NY 10016 Telephone: 212–725–5176 1–800–754–6490 (1–800–SKIN–490) E-mail: [email protected] Internet Web site: http://www.skincancer.org Major goals of The Skin Cancer Foundation are to increase public awareness of the importance of taking protective measures against the damaging rays of the sun and to teach people how to recognize the early signs of skin cancer. They conduct public and medical education programs to help reduce skin cancer. Organization: Westside location: Starlight Starbright Children’s Foundation Address: Suite 450 1850 Sawtelle Road Los Angeles, CA 90025 Telephone: 310–479–1212 1–800–315–2580 E-mail: [email protected] Internet Web site: http://www.slsb.org Mid-Wilshire location: Address: Suite 2250 5900 Wilshire Boulevard Los Angeles, CA 90036 Telephone: 323–634–0080 1–800–274–7827 E-mail: [email protected] Internet Web site: http://www.slsb.org In July 2004, the Starlight Children’s Foundation and the STARBRIGHT Foundation merged to form the Starlight Starbright Children’s Foundation. Starlight Starbright is an international nonprofit organization designed to help seriously ill children and adolescents cope with the psychosocial and medical challenges they face. Starlight Starbright offers in-hospital, outpatient, school, and home-based programs and services free of charge to children, adolescents, and their families during the course of an illness and during recovery. Staff can respond to calls in Spanish, and some of the programs are offered in Spanish. Organization: Support for People with Oral and Head and Neck Cancer (SPOHNC) Address: Post Office Box 53 Locust Valley, NY 11560–0053 Telephone: 1–800–377–0928 E-mail: [email protected] Internet Web site: http://www.spohnc.org The SPOHNC is a self-help organization that serves oral and head and neck cancer patients, survivors, and their families. The organization offers support group meetings, information, newsletters, and teleconferences. The SPOHNC also offers a “Survivor to Survivor” network which pairs survivors or their family members with volunteers who have had a similar diagnosis and treatment program. Organization: The Susan G. Komen Breast Cancer Foundation Address: Suite 250 5005 LBJ Freeway Dallas, TX 75244 Telephone: 972–855–1600 1–800–462–9273 (1–800–I’M AWARE®) E-mail: [email protected] Internet Web site: http://www.breastcancerinfo.com The Susan G. Komen Breast Cancer Foundation’s mission is to eradicate breast cancer as a lifethreatening disease by advancing research, education, screening, and treatment. This organization operates a national toll-free breast cancer helpline (1–800–I’M AWARE) that is answered by trained volunteers whose lives have been personally touched by breast cancer. Breast health and breast cancer materials, including pamphlets, brochures, booklets, posters, videos, CD-ROMs, fact sheets, and community outreach materials, are available. Staff can respond to calls in Spanish, and some publications are available in Spanish. Organization: Thyroid Cancer Survivors’ Association, Inc. (ThyCa) Address: Post Office Box 1545 New York, NY 10159–1545 Telephone: 1–877–588–7904 E-mail: [email protected] Internet Web site: http://www.thyca.org ThyCa offers a network of services to thyroid cancer survivors, caregivers, family members, and friends. These services include e-mail support groups, person-to-person support, local support groups, and a toll-free survivors’ telephone line. ThyCa also offers a low-iodine cookbook, newsletters, conferences, and workshops. The organization has volunteers who are fluent in Spanish. Organization: US® TOO! International, Inc. Address: 5003 Fairview Avenue Downers Grove, IL 60515 Telephone: 630–795–1002 (in the Chicago area) 1–800–808–7866 (1–800–80–US TOO) E-mail: [email protected] Internet Web site: http://www.ustoo.org US TOO is a prostate cancer support group organization. Goals of US TOO are to increase awareness of prostate cancer in the community, educate men newly diagnosed with prostate cancer, offer support groups, and provide the latest information about treatment for this disease. A limited selection of Spanish-language publications is available. Address: Vital Options® International TeleSupport® Cancer Network Suite 645 15821 Ventura Boulevard Encino, CA 91436–2946 Telephone: 818–788–5225 Organization: 1–800–477–7666 (1–800–GRP–ROOM) E-mail: [email protected] Internet Web site: http://www.vitaloptions.org The mission of Vital Options is to use communications technology to reach people dealing with cancer. This organization holds a weekly syndicated call-in cancer radio talk show called “The Group Room®,” which provides a forum for patients, long-term survivors, family members, physicians, and therapists to discuss cancer issues. Listeners can participate in the show during its broadcast every Sunday from 4 p.m. to 6 p.m. Eastern time by calling the toll-free telephone number. A live Web simulcast of “The Group Room” can be heard by logging onto the Vital Options Web site. Organization: The Wellness Community® Address: Suite 54 919 18th Street, NW. Washington, DC 20006 Telephone: 202–659–9709 1–888–793–9355 (1–888–793–WELL) E-mail: [email protected] Internet Web site: http://www.thewellnesscommunity.org The Wellness Community provides free psychological and emotional support to cancer patients and their families. They offer support groups facilitated by licensed therapists, stress reduction and cancer education workshops, nutrition guidance, exercise sessions, and social events. Organization: Y-ME National Breast Cancer Organization™, Inc. Address: Suite 500 212 West Van Buren Street Chicago, IL 60607 Telephone: 312–986–8338 1–800–221–2141 (English) 1–800–986–9505 (Spanish) E-mail: [email protected] (English); [email protected] (Spanish) Internet Web site: http://www.y-me.org The Y-ME National Breast Cancer Organization provides information and support to anyone who has been touched by breast cancer. Y-ME serves women with breast cancer and their families through a national hotline (available 24 hours a day), open-door groups, early detection workshops, and support programs. Numerous local chapter offices are located throughout the United States. A section of the Y-ME Web site, a toll-free hotline, and publications are available in Spanish. Criteria for inclusion of organizations in this fact sheet The national, nonprofit organizations included in this fact sheet, like NCI, provide services and/or information to cancer patients and their families. They also affirm the importance of scientific research and investigations of new approaches to cancer detection, treatment, and prevention. If you would like to nominate your organization for inclusion in this fact sheet, please write to the following address for an application form: National Cancer Institute Fact Sheet Application Form Room 3035A 6116 Executive Boulevard, MSC 8322 Bethesda, MD 20892–8322 All submissions will be reviewed biannually. Organizations will receive notification of the results of the review. ### Related Resources Publications (available at http://www.cancer.gov/publications) National Cancer Institute Fact Sheet 2.8, Cancer Fund-Raising Organizations National Cancer Institute Fact Sheet 8.3, Financial Assistance for Cancer Care National Cancer Institute Fact Sheet 8.8, Cancer Support Groups: Questions and Answers National Cancer Institute Fact Sheet 8.9, How To Find Resources in Your Own Community If You Have Cancer National Cancer Institute (NCI) Resources Cancer Information Service (toll-free) Telephone: 1–800–4–CANCER (1–800–422–6237) TTY: 1–800–332–8615 Online NCI’s Web site: http://www.cancer.gov LiveHelp, NCI’s live online assistance: https://cissecure.nci.nih.gov/livehelp/welcome.asp Back to Top NCI Home | Text-Only Version | Contact Us | Policies | Accessibility | Site Help | Site Map A Service of the National Cancer Institute Your Health Care Team: Your Doctor Is Only the Beginning Coping with cancer is not an easy thing. The physical effects of illness and treatment can be quite severe, and the emotional and psychological impact of having cancer can be equally challenging. However, the good news is that there are many kinds of help available to you through the different members of your health care team. Below is a description of the health care professionals who are usually accessible to someone who has cancer. Each of these people can play a vital role in helping you obtain the best treatment possible and maintain the highest quality of life throughout your diagnosis and treatment. First Things First: Your Own Role It may seem obvious, but it is very important to remember that you are the most important person on your health care team. As with any type of health care you receive, you are a consumer of services, and you should not be afraid to ask questions about what you are getting and who is providing it. You might consider these tips: When you are going to meet with someone (a doctor, nurse, or specialist), bring someone else with you. It helps to have another person hear what is said and think of questions to ask. Write out your questions beforehand to make sure you don't forget to discuss anything. Write down the answers you get, and make sure you understand what you are hearing. Do not be afraid to ask your questions or ask where you can find more information about what you are discussing. Being well-informed is your most important task on the health care team. Social Workers: Lots of Help from One Place Social workers are professionally trained in counseling and practical assistance. They provide the broadest range of help to people with cancer, and are a good place to start if you have recently been diagnosed with cancer and unsure of what to do next. Oncology social workers specialize in cancer; most hospitals that treat cancer patients have certified oncology social workers on staff. Clinical or psychiatric social workers have an advanced degree or Ph.D. in social work and are trained to provide family therapy, marital counseling, or counseling focused on coping with chronic illness. A hospital social worker can also refer you to a clinical social worker in private practice in the community. The hospital social worker can also provide counseling, find a support group for you, locate services in your community that can help you with home care or transportation, and guide you through the process of applying to the government for Social Service Disability or other forms of assistance. They can also help you understand your diagnosis and talk to you about treatment, side effects, and what to expect. If you need help finding a social worker in your area, start by contacting your local hospital. Psychiatrists: If You Need Medication or Feel Depressed A psychiatrist is a medical doctor who specializes in providing psychotherapy, or general psychological help. A psychiatrist specializes in helping people who are depressed, anxious, or otherwise unable to cope psychologically. Because they are medical doctors, psychiatrists can also prescribe medication, such as antidepressants or medication to help you sleep. To find a psychiatrist, you can ask your doctor for a referral, ask if your hospital has a psychiatric department, call your Health Maintenance Organization (HMO) or other managed care plan, or ask a social worker to help. Psychologists: Providing Therapy and Counseling A psychologist is also someone who can assist you if you are feeling depressed, anxious, or sad. While not medical doctors, psychologists have obtained a doctoral degree in psychology and counseling; many specialize in marital counseling or chronic illness. Some cancer centers have psychologists on staff, but if you are looking for one, ask your doctor, your HMO, your hospital, or a social worker for a referral. Nurses: A Very Important Role in Care Nurses are an extremely important part of your health care team. Nurses have a wide range of skills, and are usually in charge of actually implementing the plan of care your doctor has set up for you. They are trained to administer medication and monitor side effects. All major medical centers have nurses who specialize in cancer. Whether you are staying in the hospital for care or receive it on an outpatient basis (which means you go home after each treatment), you will benefit from seeking assistance, asking questions, or getting tips and advice from your nurse or nurse-practitioner. Nurses are often aware of support services in your community and can usually provide you with educational materials and pamphlets. You may also arrange or request a registered nurse to visit you at home if needed. If the visit is approved by your doctor, it will usually be covered by insurance. Another option is to hire a private duty nurse who does not work for your hospital or health care service. This can be expensive and often is not covered by insurance, but can ease the burden of care on your family or loved ones. Home Health Aides: Care at Home Another form of home care is from a home health aide. Home health aides assist people who are ill and need help moving around, bathing, cooking, or doing household chores. Some state Medicaid programs will pay for home health aide care, provided they are supervised by a nurse. However, private insurance or managed care plans rarely pay for a home health aide unless there is also a need for skilled nursing care. To find home health aide care, ask your physician, nurse, or social worker, and remember to ask if the charges vary based on income. Also, the National Association of Home Care (202–547–7424) publishes a free booklet How to Select a Home Care Agency. The telephone yellow pages are another source, but be sure to check credentials, find out whether the agency is bonded, and ask for references. Rehabilitation Specialists: Help for Recovery Rehabilitation services help people recover from physical changes caused by cancer or cancer treatment. It includes the services of physical therapists, occupational therapists, counselors, speech therapists, and other professionals who help you physically recover from cancer. For example, physical therapy can help you rebuild the muscles in your arm and shoulder if you have had chest surgery. Most physicians will refer you to rehabilitation services if you need them; be sure to ask if you think you might want them. Also, check to see if these types of services are covered under your insurance plan (some may be, others may not). Additionally, some cancer or social service organizations may provide you with free rehabilitation services if you are not insured for them. Dietary or Nutritional Services Cancer and cancer treatment can cause people to lose weight. For this reason, dietary or nutritional counseling or services are commonly prescribed for people with cancer. A dietitian can suggest ways to get enough calories, vitamins, and protein to help you feel better and control your weight, and can give you tips about increasing your appetite if you experience nausea, heartburn, or fatigue from your illness or treatment. Most hospitals have registered dietitians on staff, and you can ask your doctor about meeting with them. If you are trying to locate a dietitian in your community, be sure to ask about experience and training. Remember to check if the services of a dietitian are covered under your insurance; if not, ask your doctor, nurse, or social worker about community-based programs that offer free services. Clergy: Spiritual Support Is Important Prayer and spiritual counseling can be very important in coping with a serious illness such as cancer. Many people find it useful to get help from clergy or other spiritual leaders, and there is no question that a strong sense of spirituality can help people face difficult challenges with courage and a sense of hope. Some studies show that people with cancer have less anxiety and depression, even pain, when they feel spiritually connected. Even if your beliefs are challenged by your illness, don't be afraid to reach out to others for help. It is important to remember that you are not alone at this time. Hospice Care: Help with Terminal Illness Hospice care focuses on the special needs of people who have terminal cancer. Sometimes called palliative care, this type of care focuses on providing comfort, controlling physical symptoms like pain, and giving emotional or spiritual support. Hospice care is usually provided at home, although there are hospice centers that operate much like hospitals and provide full-time care. Your doctor or social worker can refer you for hospice care. Home hospice care is usually coordinated through a nurse, who then sends a home health aide, social worker, occupational therapist, clergy, or the type of specialist that is appropriate for the needs of the hospice patient. Hospice care is not for everyone. It is important to discuss this option carefully and get guidance from your doctor, nurse, or social worker. Putting the Team Together: Find Help and Hope A diagnosis of cancer may be the most difficult challenge you or your loved ones will ever face. That is why it is important to find help and try to maintain your sense of hope no matter what your situation. Your team of health care professionals is knowledgeable about the many different aspects of cancer: medical, physical, emotional, social, and spiritual. They are available to you as much or as little as you need, but it is difficult for them to know if you need help unless you ask for it. Don't be afraid, embarrassed, or hesitant to ask questions; voice your opinion, and seek the care you feel you need and deserve. This fact sheet was adapted with permission from Cancer Care, Inc., a nonprofit social service agency whose mission is to help people with cancer and their families. Cancer Care's toll-free telephone number is 1–800–813– HOPE. The National Cancer Institute and Cancer Care, Inc., are in partnership to increase awareness of the psychosocial issues faced by cancer patients and to provide resources to cancer patients and their families. ### Financial Assistance for Cancer Care Cancer imposes heavy economic burdens on both patients and their families. For many people, a portion of medical expenses is paid by their health insurance plan. For individuals who do not have health insurance or who need financial assistance to cover health care costs, resources are available, including Government-sponsored programs and services supported by voluntary organizations. Cancer patients and their families should discuss any concerns they may have about health care costs with their physician, medical social worker, or the business office of their hospital or clinic. The organizations and resources listed below may offer financial assistance. Organizations that provide publications in Spanish or have Spanish-speaking staff have been identified. The national American Cancer Society (ACS) office can provide the telephone number of the local ACS office serving your area. The ACS offers programs that help cancer patients, family members, and friends cope with the treatment decisions and emotional challenges they face. Information on these programs is available on the Web site listed below. Some materials are published in Spanish. Spanish-speaking staff are available. Telephone: 1–800–227–2345 (1–800–ACS–2345) Web site: http://www.cancer.org Cancer Care is a national nonprofit agency that offers free support, information, financial assistance, and practical help to people with cancer and their loved ones. Services are provided by oncology social workers and are available in person, over the telephone, and through the agency’s Web site. Cancer Care’s reach also extends to professionals—providing education, information, and assistance. A section of the Cancer Care Web site and some publications are available in Spanish, and staff can respond to calls and e-mails in Spanish. Cancer Care also operates the AVONCares Program for Medically Underserved Women, which provides financial assistance to low-income, under- and uninsured, underserved women throughout the country who need supportive services (transportation, child care, and home care) related to the treatment of breast and cervical cancers. Telephone: 1–800–813–4673 (1–800–813–HOPE) Web site: http://www.cancercare.org The Candlelighters Childhood Cancer Foundation (CCCF) is a nonprofit organization that provides information, peer support, and advocacy through publications, an information clearinghouse, and a network of local support groups. CCCF maintains a list of organizations to which eligible families may apply for financial assistance. Telephone: 1–800–366–2223 (1–800–366–CCCF) Web site: http://www.candlelighters.org Community voluntary agencies and service organizations such as the Salvation Army, Lutheran Social Services, Jewish Social Services, Catholic Charities, and the Lions Club may offer help. These organizations are listed in your local phone directory. Some churches and synagogues may provide financial help or services to their members. Fund-raising is another mechanism to consider. Some patients find that friends, family, and community members are willing to contribute financially if they are aware of a difficult situation. Contact your local library for information about how to organize fund-raising efforts. General Assistance programs provide food, housing, prescription drugs, and other medical expenses for those who are not eligible for other programs. Funds are often limited. Information can be obtained by contacting your state or local Department of Social Services; this number is found in the local telephone directory. Hill-Burton is a program through which hospitals receive construction funds from the Federal Government. Hospitals that receive Hill-Burton funds are required by law to provide some services to people who cannot afford to pay for their hospitalization. Information about which facilities are part of this program is available by calling the toll-free number or visiting the Web site shown below. A brochure about the program is available in Spanish. Telephone: 1–800–638–0742 Web site: http://www.hrsa.gov/osp/dfcr/obtain/consfaq.htm Income Tax Deductions: Medical costs that are not covered by insurance policies sometimes can be deducted from annual income before taxes. Examples of tax deductible expenses might include mileage for trips to and from medical appointments, out-of-pocket costs for treatment, prescription drugs or equipment, and the cost of meals during lengthy medical visits. The local Internal Revenue Service office, tax consultants, or certified public accountants can determine medical costs that are tax deductible. These telephone numbers are available in the local telephone directory. Web site: http://www.irs.ustreas.gov The Leukemia and Lymphoma Society (LLS) offers information and financial aid to patients who have leukemia, non-Hodgkin's lymphoma, Hodgkin’s lymphoma, or multiple myeloma. Callers may request a booklet describing LLS’s Patient Aid Program or the telephone number for their local LLS office. Some publications are available in Spanish. Telephone: 1–800–955–4572 Web site: http://www.leukemia-lymphoma.org Medicaid (Medical Assistance), a jointly funded, Federal-State health insurance program for people who need financial assistance for medical expenses, is coordinated by the Centers for Medicare & Medicaid Services (CMS), formerly the Health Care Financing Administration. At a minimum, states must provide home care services to people who receive Federal income assistance such as Social Security Income and Aid to Families with Dependent Children. Medicaid coverage includes part-time nursing, home care aide services, and medical supplies and equipment. Information about coverage is available from local state welfare offices, state health departments, state social services agencies, or the state Medicaid office. Check the local telephone directory for the number to call. Information about specific state contacts is also available on the Web site listed below. Spanish-speaking staff are available in some offices. Web site: http://www.cms.gov/medicaid/consumer.asp Medicare is a Federal health insurance program also administered by the CMS. Eligible individuals include those who are 65 or older, people of any age with permanent kidney failure, and disabled people under age 65. Medicare may offer reimbursement for some home care services. Cancer patients who qualify for Medicare may also be eligible for coverage of hospice services if they are accepted into a Medicare-certified hospice program. To receive information on eligibility, explanations of coverage, and related publications, call Medicare at the number listed below or visit their Web site. Some publications are available in Spanish. Spanish-speaking staff are available. Telephone: 1–800–633–4227 (1–800–MEDICARE) TTY: 1–877–486–2048 Web site: http://www.medicare.gov The Patient Advocate Foundation (PAF) provides education, legal counseling, and referrals to cancer patients and survivors concerning managed care, insurance, financial issues, job discrimination, and debt crisis matters. The Patient Assistance Program is a subsidiary of the PAF. It provides financial assistance to patients who meet certain qualifications. The toll-free number is 1– 866–512–3861. Telephone: 1–800–532–5274 Web site: http://www.patientadvocate.org Patient Assistance Programs are offered by some pharmaceutical manufacturers to help pay for medications. To learn whether a specific drug might be available at reduced cost through such a program, talk with a physician or a medical social worker. The Social Security Administration (SSA) is the Government agency that oversees Social Security and Supplemental Security Income. A description of each of these programs follows. More information about these and other SSA programs is available by calling the toll-free number listed below. Spanishspeaking staff are available. Telephone: 1–800–772–1213 TTY: 1–800–325–0778 Social Security provides a monthly income for eligible elderly and disabled individuals. Information on eligibility, coverage, and how to apply for benefits is available from the Social Security Administration. Web site: http://www.ssa.gov/SSA_Home.html Supplemental Security Income (SSI) supplements Social Security payments for individuals who have certain income and resource levels. SSI is administered by the Social Security Administration. Information on eligibility, coverage, and how to file a claim is available from the Social Security Administration. Web site: http://www.ssa.gov/notices/supplemental-security-income The State Children’s Health Insurance Program (SCHIP) is a Federal-State partnership that offers low-cost or free health insurance coverage to uninsured children of low-wage, working parents. Callers will be referred to the SCHIP program in their state for further information about what the program covers, who is eligible, and the minimum qualifications. Telephone: 1–877–543–7669 (1–877–KIDS–NOW) Web site: http://www.insurekidsnow.gov Transportation: There are nonprofit organizations that arrange free or reduced cost air transportation for cancer patients going to or from cancer treatment centers. Financial need is not always a requirement. To find out about these programs, talk with a medical social worker. Ground transportation services may be offered or mileage reimbursed through the local ACS or your state or local Department of Social Services. Veterans Benefits: Eligible veterans and their dependents may receive cancer treatment at a Veterans Administration Medical Center. Treatment for serviceconnected conditions is provided, and treatment for other conditions may be available based on the veteran’s financial need. Some publications are available in Spanish. Spanish-speaking staff are available in some offices. Telephone: 1–877–222–8387 (1–877–222–VETS) Web site: http://www1.va.gov/Health_Benefits/
