HOW TO CONNECT WITH OTHER YOUNG WOMEN DEALING
WITH BREAST CANCER
Organizations:
American Cancer Society
800-ACS-2345
www.cancer.org
This nationwide not-for-profit organization offers many different types of information and support for people living with cancer. Among the many programs available
through ACS is the Reach to Recovery program, which “matches” young women with other young women with a similar diagnosis, type of surgery,
and/or treatment. The newly diagnosed woman then receives a phone call from a Reach to Recovery volunteer who is close to her in age and has a similar medical
situation.
Young Survival Coalition
877-YSC-1011, 212-916-7667
www.youngsurvival.org
This is the only international not-for-profit network of breast cancer survivors and supporters that is dedicated to the concerns and issues that are unique to young women with breast cancer. The Young Survival Coalition offers women the opportunity to connect with peers in a number of ways. Through the YSC Web site, young women can access information on fertility, pregnancy, treatment and reconstruction, quality of life, clinical trials, and existing research. YSC members and affiliates can be found across the United States.
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PEER SUPPORT AND GENERAL INFORMATION FOR YOUNG
WOMEN AND THEIR LOVED ONES
Organizations:
Cancer Care
212-712-8080
www.cancercare.org
This national organization provides a wide range of free professional social services, including counseling for patients, their partners, parents, and young children.
Gilda’s Club
212-647-9700
www.gildasclub.org
This organization has a number of not-for-profit centers that offer a variety of services to individuals who are dealing with any type of cancer, and to their family members.
Living Beyond Breast Cancer (LBBC)
888-753-5222
www.lbbc.org This not-for-profit educational organization focuses on posttreatment and qualityof- life issues.
The Mary-Helen Mautner Project for Lesbians with Cancer 202-332-5536 www.mautnerproject.org This volunteer organization is dedicated to helping lesbians with cancer and their partners and caregivers. Extensive resources, links, and professional trainings are available.
Men Against Breast Cancer 866-547-6222 www.menagainstbreastcancer.org This national not-for-profit organization mobilizes men who wish to join in the fight against breast cancer. It also provides support to men who are dealing with the breast cancer diagnosis of a significant woman in their life.
Mothers Supporting Daughters with Breast Cancer
410-778-1982
www.mothersdaughters.org
This national not-for-profit organization provides
support services designed to help mothers whose daughters are battling breast
cancer.
National Association of Breast Cancer Organizations
888-80-NABCO
www.nabco.org
NABCO is one of the largest educational resources on breast
cancer in the United States. NABCO publications cover the range of experiences
faced by women with breast cancer, and the organization’s Web site is
comprehensive.
National Breast Cancer Coalition
202-296-7477
www.stopbreastcancer.org
This grassroots organization focuses on ending breast cancer through action
and advocacy. NBCC’s main goals are to increase federal funding for breast cancer research and to collaborate with the scientific community to implement new models of research. Members include breast cancer organizations and individuals around the country.
Sharsheret
866-832-9909, 201-837-8793,
www.sharsheret.org
This organization is dedicated to addressing the unique challenges facing young Jewish women living with breast cancer.
Y-Me National Breast Cancer Organization
800-221-2141
www.y-me.org
This nonprofit organization provides information and support to individuals
with breast cancer as well as to their family members and the significant people in their lives.
Publications and Online Sources
www.breastcancer.org
This online nonprofit organization provides reliable, complete, and up-to-date medical and personal information about breast cancer. Live chats, transcripts, and booklets are all available by visiting this comprehensive site.
Confronting the Cow: A Young Family’s Struggle with Breast Cancer, Loss
and Rebuilding by C. B. Donner (Durham: Moonlight Publishing LLC, 2000;
240 pages). Written from the perspective of a husband who lost his wife to breast cancer at age 36.
Cancer in Two Voices by Sandra Butler and Barbara Rosenblum (Denver,
Colo.: Spinsters Book Company, 1996). A moving and honest account from
diary excerpts of the authors’ identities as lesbian Jewish women living with advanced breast cancer.
A Cancer Battle Plan: Six Strategies for Beating Cancer, from a Recovered “Hopeless Case,” by Anne E. Frahm with David J. Frahm (JP Tarcher, 1998).
Written by a survivor of advanced, metastatic breast cancer. Understand what cancer does to your body; give your immune system the tools it needs to fight disease; choose the treatments that are best for you; learn how to help those who are fighting cancer. Includes resource lists and a complete nutritional battle plan.
www.mamm.com
This Web site is sponsored by Mamm magazine, a commercial publication devoted to covering issues of concern to women living with breast and reproductive cancers.
www.susanlovemd.com
This Web site provides breast cancer content, personal guidance, chats and community for women living with breast cancer.
What’s Happening to the Woman I Love? Couples Coping with Breast Cancer
(Susan G. Komen Breast Cancer Foundation, 2001; 16 pages). This is a general reference covering ways to be helpful and supportive when your partner is coping with breast cancer. Contact The Komen Foundation, 800-I’M AWARE or www.breastcancerinfo.com.
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WHEN CHILDREN ARE PRESENT—PARENTING WHILE
DEALING WITH BREAST CANCER
Organizations:
Kids Konnected
800-899-2866
www.kidskonnected.org
This national not-for-profit organization provides age-appropriate books for children dealing with a parent’s cancer diagnosis, and can connect children with peers. Literature for parents is also available.
KidsCope
www.kidscope.org
This nonprofit organization is dedicated to helping families and their children better understand the effects of cancer and chemotherapy in a parent.
Books
Kemo Shark
by H. Elizabeth King.
Written by a child psychologist who is a breast cancer survivor and her 8-year-old son, this “comic book” is designed to help children with the psychological and physiological changes a family may face when a parent undergoes chemotherapy. Available free through KidsCope, www.kidscope.org.
Michael’s Mommy Has Breast Cancer
by Lisa Torrey, illustrated by Barbara
Watler (Coral Springs, Fla.: Hibiscus Press, 1999; 34 pages).
This book, for children aged 5 to 10, chronicles the feelings that a young boy experiences after his mother is diagnosed with breast cancer.
Moms Don’t Get Sick
by Pat Brack and Ben Brack (Aberdeen, S.D.: Medius
Publishing, 1990).
A powerful firsthand look at breast cancer as told by a
mother and her 10-year-old son.
My Mommy Has Cancer
by Carolyn Stearns Parkinson (Folsom, Calif.: Solace
Publishing, 1991; 916-851-1771).
This book is appropriate for young children, ages 3 to 8, who have relatives with cancer.
Our Family Has Cancer, Too!
by Christine Clifford (Minneapolis: University
of Minnesota Press, 1997; 64 pages).
This book, for children ages 5 to 14, talks about one child’s struggle to understand and cope with his mother’s cancer.Available at bookstores or from The Cancer Club, 800-586-9062 or www.cancerclub.com.
Our Mom Has Cancer
by Abigail and Adrienne Ackerman (American Cancer
Society, 2001; 27 pages). Written and illustrated by two sisters, aged 11 and 9, this book relays their experience of living with a mother with breast cancer. Available from ACS, 800-ACS-2345 or www.cancer.org.
The Paper Chain
by Claire Blake, Eliza Blanchard, and Kathy Parkinson
(Santa Fe, N.Mex.: Health Press, 1998; 32 pages).
This book, for children ages 3 to 8, relays the emotions of two young boys whose mother has breast cancer. Available at bookstores or from Health Press, 800-643-BOOK.
When Someone in Your Family Has Cancer
(National Cancer Institute, P619, 1995; 28 pages). This NCI booklet is written for the young person whose parent has cancer. Available from NCI’s CIS, 800-4-CANCER.
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YOUR BODY AND BREAST CANCER—ISSUES OF RECONSTRUCTION,
HAIR LOSS, SKIN CHANGES, AND OTHER PHYSICAL SIDE
EFFECTS OF CHEMOTHERAPY AND RADIATION
Organizations:
American Society of Plastic and Reconstructive Surgeons (ASPRS), 847-228-9900, 888-4-PLASTIC, or www.plasticsurgery.org. The ASPRS will provide information and referrals to board certified surgeons in your area. You can find a certified surgeon by calling the ASPS directly or by looking at the society’s Web site.
Look Good Feel Better This program, created by the American Cancer Society, helps women deal with the physical effects of chemotherapy and/or radiation. Groups are led by trained cosmetologists who volunteer their time to teach creative ways to use makeup, accessories, and head coverings to address some of the side effects of treatment, such as hair loss and skin changes. The program is free of charge. To locate a Look Good Feel Better session close to you, contact the American Cancer Society at 1-800-ACS-2345.
Publications
Cancer-Related Fatigue: Treatment Guidelines for Patients, American Cancer Society and National Comprehensive Cancer Network Version I, 9448.00, December 2001). Available from ACS, 800-ACS-2345.
Coping with the Side Effects of Radiation and Chemotherapy (Cancer Care, Inc., 2001). Available from Cancer Care, 800-813-HOPE or www.cancercare. org.
Managing the Side Effects of Chemotherapy and Radiation Therapy: A Guide for Patients and Their Families by Marylin J. Dodd (San Francisco: UCSF Nursing Press, 2001; 324 pages). Available from UCSF Nursing Press, 415-476-4992 or nurseweb.ucsf.edu/www/books.html.
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STARTING A FAMILY AFTER BREAST CANCER—
A RANGE OF OPTIONS AND EXPERIENCES
Organizations
Fertile Hope, 888-994-HOPE or www.fertilehope.org. This not-for-profit organization is dedicated to providing support and information to cancer patients dealing with fertility issues before, during, and after treatment.
La Leche League International, 847-519-7730 or www.lalecheleague.org. This organization is a leading source of information on breast-feeding, including information on breast-feeding before and after breast cancer and breast-feeding with implants.
Pregnant with Cancer, 800-743-6724 x308 or www.pregnantwithcancer.org. Pregnant with Cancer is a network of women from across the United States who have been diagnosed with breast cancer during pregnancy. Members lend support, share their experiences, and offer hope.
Publications
Sexuality and Fertility after Cancer by Leslie R. Schover (New York: John Wiley & Sons, 1997; 304 pages). This book helps survivors and their partners learn to enjoy sex again and make informed choices about having children.
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CONCERNS ABOUT WORK AND CAREER
Organizations
Cancer and Careers, www.cancerandcareers.org.This organization’s Web site explores issues related to working while dealing with a diagnosis of cancer. Information is also available for those who wish to support individuals dealing with cancer in the workplace.
U.S. Equal Employment Opportunity Commission (EEOC), 800-669-4000 or
www.eeoc.gov. This government agency provides detailed information on Americans with Disabilities Act provisions and instructions on how to file a charge of discrimination. To reach your local EEOC office, look in the phone book under “U.S. Government” or call the number given here. In addition to having federal protection under the ADA, you may be protected by state laws. The EEOC can also help you find the right state agency for more information
on state protection.
Job Accommodation Network, 800-526-7234 or www.jan.wvu.edu. This service of the U.S. Department of Labor provides free advice on making accommodations at work.
Patient Advocate Foundation, 800-532-5274, 757-873-6668, or www.patientadvocate.org This national nonprofit organization deploys case managers,doctors, and attorneys to function as active liaisons between the patient and his or her insurer, employer, and/or creditors in order to resolve insurance, job discrimination, and/or debt crisis matters relating to the patient’s condition.
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EXPLORING YOUR TREATMENT OPTIONS, RESEARCH,
AND CLINICAL TRIALS
Organizations
National Cancer Institute (NCI), 800-4-CANCER or www.nci.nih.gov. This
U.S. government office and its Web site provide information on various types of cancer, different treatment options, and current clinical trials. Cancer information specialists can help callers locate information on clinical trials that are appropriate for specific diagnoses, by phone.
Publications
Dr. Susan Love’s Breast Book by Susan M. Love and Karen Lindsey (Cambridge,Mass.: Perseus Books, 2000; 632 pages).
This book is an excellent general reference for all aspects of breast cancer.
Breast Cancer: The Complete Guide by Yashar Hirshaut and Peter I. Pressman (New York: Bantam Books, 2000; 368 pages).
This is a comprehensive resource of medical information and practical advice on breast cancer.
HER-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer by Robert Bazell (New York: Random House, 2001; 240 pages).
This is the story of the creation of Genentech’s Herceptin, the monoclonal antibody that is the first gene-based therapy for breast cancer.
Patient’s Guide to Breast Cancer (New York: Beth Israel Medical Center, 2000).
This booklet clarifies the complex terms and procedures involved in diagnosis and treatment. Available from Beth Israel Medical Center, 212-844-8468 or www.wehealnewyork.org.
Tamoxifen: For the Prevention and Treatment of Breast Cancer by V. Craig Jordan (PRR, Inc., 1999). This concise textbook reviews the issues surrounding tamoxifen therapy for breast cancer treatment and risk reduction. Available from PRR, Inc., 631-777-3800 or www.cancernetwork.com.
Things to Know About: Aromatase Inhibitors (NABCO, June 2001). This onepage fact sheet explains the current role of aromatase inhibitors in treating breast cancer. Available from NABCO, 888-80-NABCO or www.nabco.org.
Things to Know About: Estrogen Receptor Status and Breast Cancer(NABCO, October 2001). This one-page fact sheet explains the role of estrogen receptor status in breast cancer treatment. Available from NABCO, 888-80-NABCO or www.nabco.org.
Understanding Breast Cancer Treatment (National Cancer Institute, P458, July 1998; 72 pages). This NCI booklet contains lists of questions that will help a patient talk to her doctor about all aspects of breast cancer. Available from NCI’s CIS, 800-4-CANCER.
Understanding Chemotherapy (American Cancer Society, 9458.00, 1999; 40 pages). This booklet provides an introduction to chemotherapy and explains its benefits and side effects. Available from ACS, 800-ACS-2345 or www.cancer.org.
Understanding Radiation Therapy (American Cancer Society, 9459.00, 2001; 36 pages). This booklet provides an introduction to radiation therapy and explains its benefits and side effects. Available from ACS, 800-ACS-2345 or www.cancer.org.
Understanding Your Pathology Report (Y-ME National Breast Cancer Organization, 2001). This brochure outlines the purpose of a pathology report and defines the many elements that compose it. Contact Y-ME, 800-221-2141 or www.y-me.org.
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COMPLEMENTARY AND ALTERNATIVE MEDICINE
Organizations
American Academy of Medical Acupuncture (AAMA), 323-937-5514 or www.medicalacupuncture.org. The American Academy of Medical Acupuncture promotes the integration of concepts from traditional and modern forms
of acupuncture with Western medical training. A search engine on the AAMA Web site can direct you to an AAMA physician near you.
The Center for Mind-Body Medicine, 202-966-7338, or www.cmbm.org. This organization has become a leader in promoting complementary cancer care, the term used for approaches that combine standard treatments with alternative methods.
International Academy of Compounding Pharmacies, 800-927-422, 281-933-8400, or www.iacprx.org. This international, nonprofit association promotes pharmaceutical compounding. You can look for a compounding pharmacy near you through the IACP Web site’s referral service.
National Center for Complementary and Alternative Medicine (NCCAM), 888-644-6226, nccam.nih.gov, or info@nccam.nih.gov. NCCAM is one of the 27 institutes and centers that make up the National Institutes of Health (NIH). Its mission is to support rigorous research on complementary and alternative medicine (CAM), to train researchers in CAM, and to disseminate information
to the public and professionals on which CAM modalities work, which do not, and why.
Publications
The Alternative Medicine Handbook: The Complete Reference Guide to Alternatives and Complementary Therapies by Barrie Cassileth (New York: W. W. Norton, 1998; 332 pages). This book gives an overview of more than 50 therapies, with a discussion of the origins of each therapy, any scientific evidence for its efficacy, and locations that offer that treatment.
American Cancer Society’s Guide to Complementary and Alternative Cancer Methods by David S. Rosenthal (American Cancer Society, 2000; 438 pages). Written in an encyclopedic format, this guide covers specific complementary and alternative modalities. Available from ACS, 800-ACS-2345 or www.cancer. org.
Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer by Michael Lerner (Cambridge, Mass.: MIT Press, 1996; 696 pages). This book is useful for those who are interested in considering alternative therapies in conjunction with standard medical treatment.
Comprehensive Cancer Care: Integrating Alternative, Complementary, and Conventional Therapies by James S. Gordon and Sharon Curtin (Cambridge, Mass.: Perseus Books, 2001; 336 pages). This book provides sound medical knowledge on alternative and complementary therapies, with an emphasis on tailoring treatments to individuals.
Zen and the Art of Knitting: Exploring the Links Between Knitting, Spirituality, and Creativity by Bernadette Murphy (Avon, Mass.: Adams Media, 2002; www.zenknitting.com. This book explores the act of knitting as a powerful form of meditation. It is a collection of essays that unite Eastern and Western philosophies through art and medical science.
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LYMPHEDEMA RESOURCES
Organizations
The National Lymphedema Network, 800-541-3259 or www.lymphnet.org. This nonprofit organization provides information about the prevention and treatment of lymphedema to patients and health-care professionals, as well as Publications
Coping with Lymphedema by Joan Swirsky and Diane Sackett Nannery (New York: Avery Books, 1998; 308 pages). This book is a practical guide to understanding, treating, and living with lymphedema. Available from Avery Books, 800-788-6262. Lymphedema: A Breast Cancer Patient’s Guide to Prevention and Healing by Jeannie Burt and Gwen White (Alameda, Calif.: Hunter House Publishers, 1999; 204 pages). This book describes the options that women have for treating lymphedema. Available from Hunter House Publishers, 800-266-5592.
Lymphedema: Results from a Workshop on Breast Cancer Treatment–Related Lymphedema and Lymphedema Resource Guide by Jeanne A. Petrek, Peter I. Pressman, and Robert A. Smith (1998; 129 pages). This booklet contains presentations and recommendations from the ACS’s 1998 national workshop on lymphedema. Available from ACS, 888-227-5552.
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GENETICS AND YOUNG WOMEN
Organizations
Facing Our Risk of Cancer Empowered (FORCE), 954-255-8732 or www.facingourrisk.com. This not-for-profit organization provides support and information to women who are at high risk for developing breast cancer and to their families.
The Genetic Alliance, 800-336-GENE or www.geneticalliance.org. The Genetic Alliance supports individuals with genetic conditions and their families,educates the public, and promotes consumer-informed public policies.
The National Society of Genetic Counselors, 610-872-7608 or www.nsgc.org.
The NSGC helps women decide if they can benefit from genetic counseling,
and helps them find genetic counselors in their area.
Publications and Online Services
http://cancer.gov/search/genetics_services The Family Cancer Risk Counseling and Genetic Testing Directory offers a list of cancer risk counseling resources and genetic testing providers throughout the country. Genetic Testing for Breast Cancer Risk: It’s Your Choice (National Cancer Institute, 1997). This booklet provides a general overview on testing for breast and ovarian cancer risk. Available from NCI’s CIS, 800-4-CANCER.
The National Cancer Institute’s Breast Cancer Risk Assessment Tool (National Cancer Institute, PC version: TO71, Mac version: TO72, September 1998). The “risk disk” is an interactive patient education tool that can help to assess an individual’s risk of developing breast cancer. Available from NCI’s CIS, 800-4-CANCER.
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CONCERNS OF YOUNG WOMEN WITH ADVANCED
BREAST CANCER
Organizations
The NABCO Recurrence Project, www.nabco.org. This organization was created for women who are learning about or living with recurrent and advanced breast cancer and their family, friends, caregivers, and health-care professionals.
Publications
Advanced Breast Cancer: A Guide to Living with Metastatic Disease by Musa Mayer (Sebastopol, Calif.: O’Reilly and Associates, Inc., 1998; 540 pages). This updated, retitled edition of the author’s 1997 work Holding Tight, Letting Go helps women lead everyday lives while coping with advanced disease. It contains a good resource section. Available at bookstores. Also visit www.patientcenters.com/breastcancer for excerpts from this book and updated articles. I Still Buy Green Bananas: Living with Hope, Living with Breast Cancer (Y-ME National Breast Cancer Organization, 1997). This booklet offers practical advice and personal stories on coping with a diagnosis of advanced breast cancer and living life fully every day despite having cancer. Single copies of the booklet are available free. Available from Y-ME, 800-221-2141 or www.y-me.org. The Red Devil: A Memoir about Beating the Odds by Katherine Russell Rich (New York, Three Rivers Press, 2000; 242 pages). A young woman’s bold, witty, and extraordinarily personal account of her diagnosis of advanced-stage breast cancer. Available in bookstores.
When Cancer Recurs: Meeting the Challenge Again (National Cancer Institute, P129, 1996; 38 pages). This booklet details the different types of recurrence, types of treatment, and ways to cope with cancer’s return. Available from NCI’s CIS, 800-4-CANCER.
www.livingwithit.org This is an online support program for women with recurrent breast cancer. The site was created by Aventis Pharmaceuticals.
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INSURANCE ISSUES
Organizations
ASCO, www.asco.org. The American Federation of Clinical Oncologic Societies provides basic criteria to be used in searching for and choosing a health insurance plan that will provide quality cancer care.
Patient Advocate Foundation (PAF), 800-532-5274 , 757-873-6668, or www.patientadvocate.org. The Patient Advocate Foundation is a national nonprofit organization that deploys case managers, doctors, and attorneys to function as an active liaison between patients and their insurers, employers, and/or creditors in order to resolve insurance, job discrimination, and/or debt crisis matters relating to the patients’ condition. Reference handbooks are available.
Health Insurance Association of America, 888-869-4078, 202-824-1600, or www.hiaa.org. HIAA is a prominent trade association representing the private health care system. HIAA publications provide information on various types of insurance: health insurance, managed care, long-term care, disability, and a special guide for business owners. Numerous publications are available by calling or visiting the Web site.
Publications
The National Financial Resources Guidebook for Patients (Patient Advocate Foundation, 1999; 257 pages). This valuable resource provides listings of federal and state resources for obtaining financial assistance for a broad range of needs. Available from Patient Advocate Foundation, 800-532-5274 or www.patientadvocate.org.
What Cancer Survivors Need to Know about Health Insurance (National Coalition for Cancer Survivorship, 1999; 37 pages). This pamphlet provides a clear understanding of health insurance and how to receive maximum reimbursement for claims. Available from NCCS, 877-NCCS-YES or www.cansearch.org.
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