Patient Resources

One of the most important ways to gain control over your disease and reduce your anxiety is to get answers to your questions. Because you are an individual, your questions and needs may be different from other women's and may not be addressed by your healthcare team. This is when you can reach out to support resources and find out what you need to know. The good news is that most resources are available free of charge.

Tips for Getting Organized:

Finding Information on the Internet
The Internet is a valuable resource, but be sure that the sites you visit are recognized as having sound clinical information. Most national cancer organizations have sites, as do many medical schools and universities. Internet access is available at most public and hospital libraries if you do not have a home computer with access.

Suggestions for the Wisest Use of the Internet:


GENERAL RESOURCES

AMC Cancer Research Center's Cancer Information Line
1-800-525-3777
www.amc.org
Professional cancer counselors provide answers to questions about cancer, support and information
on free publications. Equipped for deaf and hearing-impaired callers.

American Cancer Society (ACS)
1-800-ACS-2345 (1-800-227-2345)
www.cancer.org
Provides free, written information on breast cancer, support group information and referrals to Reach to Recovery program for peer interaction.

Association of Cancer Online Resources
1-212-226-5525
www.acor.org
Online cancer information system that archives online support groups, information on treatments and clinical trials, links to other cancer education, advocacy groups on the Internet and much more.

BreastCancer.net
www.breastcancer.net
Archives the latest news on breast cancer and allows quick and specific searches.

BreastCancer.org
www.breastcancer.org
Breast cancer education site including articles, news, newsletters and chats.

CancerIndex.org
www.cancerindex.org
Online index of cancer resources and Web sites providing information and support. Provides a collection of media clips on various breast cancers. To access media clips, choose "Breast Cancer" from the list on the main screen and then click on "Multimedia Breast Cancer Resources."

Cancerlinks.org
www.cancerlinks.org
A directory of other sites and resources on specific cancers.

Chemocare.com
www.chemocare.com
Web site designed to provide the latest information about chemotherapy side effects and self-care for patients, families and caregivers. Regularly updated by Cleveland Clinics.

Merck Manual Online Medical Library
www.merck.com/mmhe/index.html
Explains disorders, their symptoms, how they are diagnosed and how they can be treated. Based on the world's most widely used textbook of medicine, The Merck Manual, but written in everyday language for patients. Provided free of charge on the Internet by Merck & Co., Inc., as a public service.

National Cancer Institute (NCI)
1-800-4-CANCER (1-800-422-6237)
www.cancer.gov
The NCI Web site provides comprehensive information on breast cancer diagnosis, treatment, statistics, research, clinical trials and breast cancer news.


ADVOCACY GROUPS / ORGANIZATIONS

Avon Breast Crusade
www.avoncrusade.com
A fundraising effort that has raised over $585 million for breast cancer education and research in countries around the world.

National Breast Cancer Coalition
1-202-296-7477
www.natlbcc.org
Grassroots advocacy group of hundreds of member organizations and tens of thousands of individuals fighting breast cancer though action, advocacy and public education.

National Coalition for Cancer Survivorship
1-877-622-7937
www.canceradvocacy.org
Advocates for quality cancer care for all Americans and the empowerment of cancer survivors through federal policy initiatives.

Patient Advocate Foundation
(Employment Issues)
1-800-532-5274
www.patientadvocate.org
The Patient Advocate Foundation is a national non-profit organization that serves as an active liaison between the patient and her insurer, employer and/or debt holders in matters relative to a diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation, ensuring access to care, maintenance of employment and preservation of financial stability.

Susan G. Komen for the Cure
1-877-GO-KOMEN (1-877-465-6636)
www.komen.org
Offers information on all areas of breast cancer treatment and support.


BREAST RECONSTRUCTION

American Cancer Society
www.cancer.org
Search: breast reconstruction
Breast reconstruction after mastectomy information.

BreastCancer.org
www.breastcancer.org/pictures/treatment/
Pictures of breast cancer patients with different types of breast reconstruction.

Breast Implants
1-888-463-6332
www.fda.gov
Search: breast implants
Information on choosing an implant, the associated risks, FDA regulations and manufacturers of implants.

Center for Microsurgical Breast Reconstruction
www.diepflap.com
Explanations of DIEP and SGAP reconstruction procedures, timelines and before-and-after photos.

Medline Plus
www.nlm.nih.gov/medlineplus/breastreconstruction.html
Complete guide to different types of breast reconstruction.


COMPLEMENTARY AND ALTERNATIVE MEDICINE (CAM)

Glycemic Index
www.southbeach-diet-plan.com/glycemicfoodchart.htm
List of foods sorted by category shown on a scale from 0 to 100 based on the extent to which they raise blood sugar levels.

Office of Dietary Supplements (ODS), NIH
www.ods.od.nih.gov
Site offering research resources, frequently asked questions and fact sheets about supplements, all geared toward helping the public make informed decisions.

National Council Against Health Fraud
www.ncahf.org
Provides links to position papers and information about alternative and unproven treatments.

U.S. Food and Drug Administration (FDA)
www.fda.gov/Food/default.htm
Site for the Center for Food Safety and Applied Nutrition provides links to information on food safety, labeling, nutrition and cosmetics.


CANCER TREATMENT / CLINICAL ASPECTS

Cancer.gov: Breast Cancer Clinical Trials
www.cancer.gov/clinicaltrials
Information on choosing and participating in clinical trials, results of recent trials and resources for finding a trial.

Inflammatory Breast Cancer (IBC) Research Foundation
www.ibcresearch.org
General information, research, articles, news articles, discussion and commentary on inflammatory breast cancer.

National Cancer Institute
www.cancer.gov
The National Cancer Institute maintains a cancer treatment database providing prognostic, stage and treatment information on more than 1,000 protocol (treatment) summaries.

National Comprehensive Cancer Network: Breast Cancer Treatment Guidelines for Patients
www.nccn.org
Decision trees included on this site aid patients in choosing treatment and follow-up options. Also available in Spanish.


CHILDREN AND FAMILIES

Caring Bridge
www.caringbridge.org
Non-profit Web service that provides a free Web site to anyone going through a health crisis, treatment or recovery.

Kids Konnected
1-800-899-2866
www.kidskonnected.org
Kids Konnected is a non-profit organization that provides for the needs of the children of cancer patients. They offer a kid-friendly and informative Web site, a 24-hour hotline, leadership training, support groups, online forums, a teddy bear outreach program and other support tools for children and families.


EMPLOYMENT CONCERNS

American Cancer Society - Americans With Disabilities Act
http://www.cancer.org/docroot/MIT/mit_3_1_2.asp
Provides basic information about the Americans with Disabilities Act.

Family and Medical Leave Act
1-866-4 US WAGE (1-866-487-9243)
http://www.dol.gov
Search: FMLA
Web site includes a fact sheet about FMLA. The toll-free number reaches the Wage and Hour Division at the Department of Labor. They can tell you how to reach the division office nearest you.

National Coalition for Cancer Survivorship (NCCS) Employment
http://www.canceradvocacy.org/resources/employment.html
NCCS offers valuable information on your employment rights as a cancer survivor, including a free download of their publication Working It Out.

The US Equal Employment Opportunity Commission
http://www.eeoc.gov/facts/cancer.html
Includes frequently asked questions about cancer in the workplace and patients� and survivors� rights under the Americans with Disabilities Act.


HAIR CARE AND MAKE-UP

Look Good ... Feel Better
1-800-395-LOOK (5665)
www.lookgoodfeelbetter.org
A comprehensive online guide to caring for your hair and skin during cancer treatment. Contact your local American Cancer Society for free classes and instructions on make-up application and hair care during treatment.

Cancer.Net
http://www.cancer.net/patient/Library/Financial+Resources
List of financial resources available through local and national service organizations for travel and housing assistance, medication and treatment cost assistance and general financial information.

Georgetown University Health Policy Institute
http://www.healthinsuranceinfo.net
The Health Policy Institute has prepared a consumer guide for getting and keeping health insurance for each state and the District of Columbia. The guides are accessible for printing or viewing online.

National Coalition for Cancer Survivorship (NCCS) Insurance
http://www.canceradvocacy.org/resources/insurance.html
NCCS offers tips about getting, keeping and affording health insurance, including a free download of their publication What Cancer Survivors Need to Know About Health Insurance.


LYMPHEDEMA

National Lymphedema Network
1-800-541-3259
www.lymphnet.org
Provides education and guidance to lymphedema patients, health care professionals and the general public.


MALE BREAST CANCER

ACS: Male Breast Cancer Resource Center
www.cancer.org
Search: male breast cancer
Information and links to other Web sites on male breast cancer.

MedicineNet.com
www.medicinenet.com/male_breast_cancer/article.htm
Provides online education about diagnosis and treatment of male breast cancer.

YourShoes® at Network of Strength
1-800-221-2141
www.networkofstrength.org
The 24-hour YourShoes Support Center can provide you with information about male breast cancer and help address your concerns. Through the Match Program you can be put in touch with a man who has survived male breast cancer.


PREGNANCY AND BREAST CANCER

Breast Cancer.org
www.breastcancer.org/tips/fert_preg_adopt/bc_pregnancy
Discussion of decisions about treatment during pregnancy.

Fertile Hope
www.fertilehope.org
Fertile Hope is a national non-profit organization dedicated to providing reproductive information, support and hope to cancer patients whose medical treatments present the risk of infertility.

Hope for Two: Pregnant With Cancer Network
1-800-743-4471
www.pregnantwithcancer.org
Connects pregnant women diagnosed with cancer to women who have lived through the experience.


PROSTHESIS

Check in the yellow pages of your telephone book, call your local unit of the American Cancer Society or ask your surgeon or nurse for references.

Network of Strength (Formerly Y-Me)
1-800-221-2141 (24-hour English hotline)
1-800-986-9505 (24-hour Spanish hotline)
www.networkofstrength.org
A wig and prosthesis program is available free to women who cannot afford to purchase these items.

ReForma
http://myreforma.com
Reusable, hypoallergenic and self-adhering prosthetic nipples available in two sizes and three colors.

Softee
1-866-605-8585
www.softeeusa.com
Site offering a wide selection of post-surgical products for recovery including reconstruction camisoles.


SEXUALITY

International Academy of Compounding Pharmacies
1-800-927-4227
www.iacprx.org
Allows patients to search for a local compounding pharmacist.

Pure Romance
1-866-ROMANCE
www.pureromance.com
Offers a range of intimate products, in-home parties and the Sensuality, Sexuality, Survival (SSS) program, which serves as a resource for women surviving cancer who have questions about renewing their intimacy.


SUPPORT GROUPS / ORGANIZATIONS

African-American Breast Cancer Alliance (AABCA)
1-800-ACS-2345
www.geocities.com/aabcainc
This organization provides education to African-American women on breast health, early detection and breast cancer support groups. For more information and to see if there is an alliance in your area, call the American Cancer Society at 1-800-ACS-2345.

Breast Cancer Network of Strength
1-800-221-2141 (24 Hour Hotline-English)
1-800-986-9505 (24 Hour Hotline-Spanish)
www.networkofstrength.org
Provides support and counseling through their 24-hour hotline YourShoes�. Trained volunteers, all of whom have had breast cancer, are matched by background and experience to callers whenever possible. Interpreters are available in 150 languages. Referrals for major cancer treatment centers are also available.

Cancer Care, Inc.
1-800-813-HOPE (1-800-813-4673)
www.cancercare.org
Offers free assistance to cancer patients through counseling, education, referral and direct financial assistance.

Living Beyond Breast Cancer
1-888-753-5222
www.lbbc.org
Provides interactive conferences, teleconferences, a toll-free information and support line, free newsletters and publications, low-cost informational recordings and a networking program.

Local Support Groups
Call your local American Cancer Society office for local support group meetings. Local numbers may be acquired by calling the national office at 1-800-ACS-2345. Or call your local cancer treatment center for support group information.

National Asian Women's Heath Organization (NAWHO)
www.nawho.org
The site explains the organization's program, Communicating Across Boundaries: The Asian American Woman's Breast and Cervical Cancer Program, and offers a free download on related cultural competency training.

National Coalition for Cancer Survivorship (NCCS)
1-877-NCCS-YES (1-877-622-7937)
www.canceradvocacy.org
Survivorship information and support. The Cancer Survival Toolbox, a CD of survival skills, is provided free (also available in Spanish).

Pink-Link
www.pink-link.org
A free online breast cancer support network with access to a member forum, online journals and breast cancer resources.

SHARE: Self Help for Women With Breast or Ovarian Cancer
1-866-891-2392
www.sharecancersupport.org
Offers survivor-led support to women with breast or ovarian cancer, their families and friends. Services include hotlines, survivor-led support groups, wellness programs, educational forums and advocacy activities.

Sharsheret (Jewish Women)
1-866-474-2774
www.sharsheret.org
Provides support and resources for young Jewish women facing breast cancer. Offers a peer support network connecting young women with others who share similar diagnoses and experiences, as well as education and outreach programs.

Sisters Network Inc. (African-American Women)
1-866-781-1808
www.sistersnetworkinc.org
African-American breast cancer survivorship organization. Promotes the importance of breast health through empowerment, support, breast education programs, resources, information and research.

The Wellness Community
Phone: 1-202-659-9709 Fax: 1-202-659-9301
www.thewellnesscommunity.org
The Wellness Community is a national non-profit organization dedicated to providing free emotional support, education and hope for people with cancer. There are 20 facilities nationwide. The Web site offers online support groups and an online newsletter for cancer patients.

Yes, I Can Action Now
www.yesicannow.org
"Yes, I Can Now" is a program created by Aventis Oncology for women with breast cancer. It is a Web and mail-based program providing patients with survivor stories, diet and exercise tips, medical information, treatment organizers and other valuable information. Patients can go online to sign up.

The Young Survival Coalition (Young Women)
1-877-972-1011
www.youngsurvival.org
An advocacy and awareness organization for young women who are diagnosed with breast cancer. The group offers support, information and education.


SURGERY

Breast Cancer Network of Strength
1-800-221-2141 (24 Hour Hotline-English)
1-800-986-9505 (24 Hour Hotline-Spanish)
www.networkofstrength.org
Gives referrals to major cancer treatment centers for second opinions or treatments not offered in some localities.

Caring Connections
www.caringinfo.org/stateaddownload
Caring Connections provides free advance directives and instructions for each state that can be opened as a PDF (Portable Document Format) file.


SURVIVORSHIP MAGAZINES

Breast Cancer Wellness Magazine
www.breastcancerwellness.org
Mission of magazine is to empower mind, body and spirit of women diagnosed with breast cancer. Go online for a free subscription.

Coping With Cancer
1-615-790-2400
www.copingmag.com
Coping with Cancer is America;s consumer magazine for people whose lives have been touched by cancer. For a subscription go online or call.

CURE
1-800-210-CURE (2873)
www.curetoday.com
CURE is a magazine for cancer patients and their families, providing information on recent advancements in diagnosis, treatment and prevention of cancer. Healthcare providers and patients can go online to sign up for a free subscription.

MAMM
1-646-365-1350
www.mamm.com
MAMM is a magazine devoted to women diagnosed with breast and reproductive cancer. For a subscription go online or call.


SURVIVORSHIP RESOURCES

Imaginis
www.imaginis.com
Web site providing education and the latest news in breast cancer for professionals and patients. Sign up for the online newsletter to receive concise summaries on the latest news and information on breast cancer.

Reach To Recovery
National ACS Office 1-800-ACS-2345
www.cancer.org
This program of the American Cancer Society offers in-home visits from volunteers. Call your local ACS unit for an appointment. Volunteers will share helpful information for recovery, including range of motion exercises for the surgical arm.

Survivorship A-Z: Practical Information for Living Successfully After a Diagnosis
http://www.survivorshipatoz.org
Survivorship A-Z provides practical information survivors need to thrive in the "new normal" that exists after a life-changing diagnosis.