Follow-up Care, Patient Support, and Patient Decision-Making Tools
Follow-up Care
- National Coalition for Cancer Survivorship Publications
Available online or by calling (877) 866-5748 - Cancer Survival Toolbox English & Spanish (Available in Chinese in text only)
The Cancer Survival Tool-Box, a self-learning audio program, is designed to help individuals with cancer learn about practical topics and skills that can help them meet the challenges of their cancer diagnosis and treatment. The program is designed to assist anyone, at any stage of illness, who is facing hard decisions and changes in life because of cancer. Family members and caregivers can also use the toolbox on behalf of a child or anyone else with cancer. - Teamwork: The Cancer Patient's Guide to Talking with your Doctor
Booklet developed by cancer survivors and health care professionals as a practical tool for patients to use in communicating with their doctor. Provides sample questions and checklists for patients. Also available in Spainish. - You Have the Right To be Hopeful
This fifty-eight page booklet offers tips on attaining and maintaining hopefulness after a cancer diagnosis. Also available in Spanish. - American Cancer Society Bookstore
Available online or by calling (800) 227-2345 - For Women Facing Breast Cancer
This booklet explains mammography, biopsy, cancer staging, breast reconstruction, and treatment options. It also gives general information about joining a clinical trial and guidance on where to find emotional support. - Two Programs, One Purpose: Helping Women with Breast Cancer
This brochure describes the ACS Reach to Recovery and Look Good...Feel Better programs. In the Reach to Recovery program, ACS-trained breast cancer survivors visit and provide information and support to women who have personal concerns about breast cancer. Look Good...Feel Better is a program for women experiencing appearance-related side effects from chemotherapy or radiation treatment. Both programs are available free of charge. The brochure contains contact information. - Exercises after Breast Surgery
This booklet contains general guidelines for arm activity after breast surgery and directions and diagrams for a series of exercises that may assist in physical rehabilitation. - Sexuality and Cancer - For the Woman who has Cancer and her Partner
This booklet presents strategies for staying sexually healthy while undergoing cancer treatment, and describes the effect of cancer treatment on female sexual desire and response. It contains information regarding needs for professional help and other resources. - "tlc" - Tender Loving Care
This catalog contains products (including hats, wigs, swimsuits, bras, and breast forms) for women who are coping with breast cancer or any cancer treatment involving hair loss. - American Society of Clinical Oncology (ASCO) Publications
Available online or by calling (888) 651-3038 - People Living With Cancer
People Living With Cancer, the patient information website of the American Society of Clinical Oncology (ASCO), provides easy to understand, oncologist-approved information including guides to understanding 50 different types of cancer, information on cancer treatment, clinical trials, a medical dictionary and drug database. Additional ASCO Resources include patient care guides, cancer news, expert live chat programs and links to patient support organizations. The website is designed to help people with cancer make informed health-care decisions. - National Institutes of Health NIHSeniorHealth.gov
This "talking" website features health information with easy access for older adults and the visually impaired. The site includes a section on breast cancer that discusses "what is breast cancer," risk factors, diagnosis and testing, treatment options, clinical trials, and frequently asked questions. A link to MEDLINE plus for more information on breast cancer is also included. - Oncology Nursing Society (ONS) Priority Symptom Management Project
This online education resource was designed to help patients and caregivers learn more about six primary cancer symptoms: fatigue, pain, anorexia, cognitive dysfunction, depression, and neutropenia. The ONS site includes information about each symptom and strategies for symptom management, as well as a glossary and resources for more information. The Web site's contents are also available in Spanish. - Susan G. Komen Breast Cancer Foundation Breast Cancer Information
The Susan G. Komen Breast Cancer Foundation Web site includes informationabout breast cancer from early detection to support. In the About Breast Cancer section (co-developed with Harvard Center for Cancer Prevention), the ABCs Of Breast Cancer Guide discusses risk factors and screening, diagnosis and treatment, after-treatment care, breast cancer financial and insurance issues, and resources and references. This web site also features an interactive audiovisual program, Anatomy of Breast Cancer, designed to help improve understanding about risk factors, diagnosis and treatment of breast cancer. Information on the Web site is also available in Spanish. - A Patient's Guide - Follow-Up Care for Breast Cancer
A booklet for breast cancer patients that explains what happens when breast cancer treatment ends. It provides the ASCO's recommendations for tests that should be conducted as part of medical care following treatment for breast cancer. It includes a glossary and resource lists. - National Cancer Institute Publications
Available by calling (800) 422-6237 - Eating Hints For Cancer Patients
This booklet is designed to help cancer patients learn more about their diet needs and how to manage eating problems during cancer treatment. It can be used along with health care provider information.
Support Groups/Survivorship
- Association of Cancer On-line Resources, Inc. (ACOR)
The ACOR site offers a very large number of online cancer information and support electronic groups, providing support to patients, caregivers, or anyone looking for answers and support about cancer and related disorders. - Cancer Survivors Network (CSN)
Created by and for cancer survivors, the Cancer Survivors Network is both a telephone and web-based support service. The web version of the CSN is located on the home page of the American Cancer Society. The site offers support to patients and family, featuring pre-recorded discussions and stories on topics chosen by cancer survivors and family members. Available online or by calling (877) 333-4673 (HOPE), toll-free in the United States, available 24 hrs a day/7 days a week. - Celebrating Life
Celebrating Life is one of the leading foundations in the nation that promotes breast cancer awareness specifically targeting African American women and women of color. This site includes information to encourage and support the advancement of knowledge and awareness of breast cancer risk and prevention in the African American community and for women of color. - Facing Our Risk of Cancer Empowered (FORCE)
FORCE is a nonprofit organization for women whose family history and genetic status put them at high risk of getting breast cancer and/or ovarian cancer, and for members of families in which this risk is present. The web site is designed to be a helpful resource for anyone who knows she is at risk, who wonders whether she might be at risk, or who cares about these issues and concerns. News, information, message board, chat room and more. - KIDSCOPE - Self-Help for Families with Breast Cancer
KIDSCOPE is a nonprofit organization formed to help families and children better understand the effects of cancer and chemotherapy in a parent. Order a free video about children's reactions to a diagnosis of breast cancer in their mothers. The video, My Mom Has Breast Cancer, includes interviews with children and mothers who have successfully weathered this experience. There is also a book available titled, Kemo Shark. Kemo Shark is the hero of a 16-page coloring book designed to help children with psychological and physiological changes in a family where a parent has cancer and undergoes chemotherapy. Kemo swims around in a cancer patient, eating the bad cancer cells and bumping into the good ones. This book was written by a child psychologist who is also a breast cancer survivor. Available in English and Spanish. Available online or by calling (404) 892-1437. - Living Beyond Breast Cancer (LBBC)
LBBC is a non-profit educational organization committed to empowering all women affected by breast cancer to live as long as possible with the best quality of life. This Web site describes its educational activities, newsletter, and outreach to medically under-served women, young survivors group, and other resources. These resources are designed to help women and families affected by breast cancer take an active role in their ongoing recovery from the disease regardless of educational background, social support or financial resources. - Look Good ... Feel Better (LGFB)
Look Good ... Feel Better is a free, national public service program dedicated to teaching women cancer patients beauty techniques to help restore their appearance and self-image during cancer treatment. The Web site includes information about the program, women's and teen programs, and how to contact them. LGFB programs are available in Spanish in six cities in the United States and in Puerto Rico. - The Mautner Project for Lesbians with Cancer
Mautner web page provides: direct services to lesbians with cancer, their partners and caregivers; education and information to the lesbian community about cancer; education to the health care community about the special concerns of lesbians with cancer and their families; and information about advocacy on lesbian health issues in national and local arenas. The web site is available in English and Spanish. - National Coalition for Cancer Survivorship (NCCS)
This NCCS site is for cancer survivors of all ages, friends and loved ones, healthcare providers, professional organizations and agencies, and research and medical centers. Information is presented about a variety of survivorship programs. This site assists online users in finding Internet cancer resources with step-by-step instructions. The Web site is available in English and Spanish. - Patient Centered Guides - Breast Cancer Center
This Web site was developed as a resource center for patients with metastatic breast cancer - individuals who have been initially diagnosed with Stage IV cancer or who are facing a recurrence. The site provides links to numerous resources for information on services, support, research, end-of-life care, advocacy and more.The site also contains news, articles, a glossary of breast cancer terms, and tools designed to help patients and families cope. - SHARE - Self-Help for Women with Breast Cancer
SHARE's services include information hotlines in English and Spanish and materials about peer-led support groups, public education, advocacy, and wellness programs. The web site is available in English and Spanish. - Sisters Network
The Sisters Network, Inc. is a national African American breast cancer survivors organization with affiliate chapters throughout the country. Dedicated to increasing local and national attention to the devastating impact that breast cancer has in the African American community, the Sisters Network offers educational resources and publications designed for African American women, peer networking and support groups. Services also include research, advocacy and community educational outreach projects, such as the Gift for Life Block Walk and Pink Ribbon Awareness Campaign. - Y-ME National Breast Cancer Organization
The Y-ME site is designed to be a support and information resource for anyone who has been impacted by breast cancer. It has phone numbers for the Y-ME National Breast Cancer Hotline in English (800-221-2141) and in Spanish (800-986-9505) and an archive of Internet resources. The web site is available in English and Spanish.
Toll-Free Help Lines
- Adelphi University New York Statewide Breast Cancer Support Hotline
This Adelphi University site has information regarding Adelphi's Statewide Toll-Free Breast Cancer Hotline at 800-877-8077. Information is available about free written materials from many sources including the National Cancer Institute and the American Cancer Society, as well as Adelphi's own material. - The National Lymphedema Network (NLN)
NLN is a non-profit organization providing 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. NLN has a toll-free recorded information line: 1-800-541-3259. - Susan G. Komen Breast Cancer Foundation
This Komen Foundation site has message posting boards and a National Toll-Free Breast Care Helpline in English, Spanish at 800-462-9273. TDD is also available. Breast health and cancer information can be accessed through a direct link to breastcancerinfo.com, an informational service of the Komen Foundation. - Y-ME National Breast Cancer Organization
The Y-ME site is designed to be a support and information resource for anyone who has been touched by breast cancer. It has phone numbers for the Y-ME National Breast Cancer Hotline in English (800-221-2141) and in Spanish (800-986-9505) and an archive of Internet resources. The web site is available in English and Spanish.
Patient Decision Making Tools
- American College of Surgeons (ACOS)
The ACOS Commission on Cancer's approval system for hospital cancer programs involves nearly 2,000 institutions. It's standards program provides clinical oversight and expertise for the commission's standard-setting activites, and interfaces with others in the development, review, and dissemination of patient care guidelines. The ACOS site has information on patient choice and decision-making about surgery, and on-line ordering of cancer publications. It also provides access to information and data pertinent to initiating a cancer registry program. - CenterWatch Clinical Trials Listing Service
CenterWatch has patient resources including a list of new FDA drug therapy approvals, listings and explanations about clinical trials, and a listing of National Institute of Health studies. Visitors may request E-mail notification of future clinical trials and FDA drug approval in particular clinical areas. - ClinicalTrials.gov at the National Institute of Health (NIH)
ClinicalTrials.gov provides free access to clinical trial information by condition or by study sponsor. There are currently nearly 200 listings of breast cancer clinical trials recruiting for patients and a small number recruiting only for male patients. Each listing includes the trial name and ID, sponsors, purpose, current status, who may be eligible, where trials are being held, researchers' names and phone numbers, and references to published papers that describe findings. - Interactive Site on Breast Cancer Awareness
The Interactive Site is a patient decision support system that provides a multimedia package of information promoting early detection and treatment of breast cancer. The site is designed for women, their family members, and physicians. The Department of Defense developed this site.
