SURVIVORSHIP RESOURCES
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Resources by Category
Conferences
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Web sites
Information for Long-term
Survivors
Conferences
(See Calendar for other
meetings and conferences)
None at this time.
Cancer Care for the Whole Patient.
Institute of Medicine, 2007
To order the report:
http://www.iom.edu/CMS/3809/34252/47228.aspx
To downloaded free materials from the Institute of Medicine web site:
Resource
List and Role Models
Report
Brief for Providers
Report
Brief for Patients
Cancer care today often provides state-of-the-science biomedical treatment, but fails to address the psychological and social (psychosocial) problems associated with the illness. These problems including patients’ lack of information or skills needed to manage the illness; anxiety, depression or other emotional problems; lack of transportation or other resources; and disruptions in work, school, and family life cause additional suffering, weaken adherence to prescribed treatments, and threaten patients’ return to health.
Today, it is not possible to deliver good-quality cancer care without addressing patients’ psychosocial health needs. All patients with cancer and their families should expect and receive cancer care that ensures the provision of appropriate psychosocial health services. The National Institutes of Health (NIH) asked the Institute of Medicine (IOM) to study the delivery of psychosocial services to cancer patients and their families and identify ways to improve it. This report recommends ten actions that oncology providers, health policy makers, educators, health insurers, health plans, quality oversight organizations, researchers and research sponsors, and consumer advocates should undertake to ensure that this standard is met.
National Cancer Institute. 2002. Facing Forward: Life After Cancer Treatment.
Bethesda, MD: National Cancer Institute.
Go to http://www.acscsn.org/books/ to
order a free copy, or read it online at this address:
http://www.acscsn.org/books/intro.html
This publication, others in the Facing Forward series, and many other
publications about survivorship issues also are available free of charge from
the NCI through its Publication Locator:
https://cissecure.nci.nih.gov/ncipubs/
(Click on "Coping with Cancer" for a compete list of NCI's free
survivorship publications.)
Centers for Disease Control and Prevention and Lance Armstrong Foundation. 2004.
A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies.
Atlanta, GA: Centers for Disease Control and Prevention.
(Click here to view or download Overview
of Plan from the CDC web site.)
Music May Reduce Chronic Pain
(PDF, 121 KB)
Research published in the Journal of Advanced Nursing has confirmed that listening to music can have a significant positive impact on perception of chronic pain. The study also found that music helped people feel less disabled by their condition.
The Georgetown University Health Policy Institute has written A Consumer Guide For Getting and Keeping Health Insurance for each state and the District of Columbia. The consumer guides are available online and will be updated periodically as changes in federal and state policy warrant. The website offers links to news, reports and information resources to help handle disputes with health plans.
http://www.healthinsuranceinfo.net
New Connections
New Connections is a family of online newsletters produced by the American
Cancer Society and delivered through e-mail. One is for people currently
undergoing cancer treatment, one is for their caregivers, and the third is for
survivors who are transitioning to life after cancer treatment. The
newsletters contain focused articles, helpful tips, and resources tailored to
the needs of the readers.
American Cancer
Society
1-800-ACS-2345
The American Cancer Society is the only nationwide cancer organization to offer its information service 24 hours a day, 7 days a week. Find information about specific cancers, treatments, side effects, research, clinical trials, data, patient programs and services, publications, community resources and more.
American Cancer Society, Cancer Survivors
Network
(Portions of this web site are available in Chinese
and Spanish languages. )
The Cancer Survivors Network (CSN) is a free, web-based peer support service for people personally touched by cancer at any point in their cancer experience.
It contains approximately 250 hours of pre-recorded personal stories and discussions among survivors and caregivers from all walks of life.
CSN also offers a virtual community of people facing the daily challenges of cancer who connect with one another via private and secure CSN email, personal web pages, discussion boards, chat rooms, an Expression Gallery and member-contributed resources. In addition, members receive a free e-newsletter monthly.
The CSN web service also offers a vibrant virtual community of survivors and family members to those who choose to register and participate in its many interactive features. Registration is free, quick, and easy. Members may search for people with similar cancer experiences or interests either by entering certain demographic information or by using key words. The service will direct users to a discussion or a person that fits the search criteria. By clicking on the "contact us" button, users can e-mail a question about cancer that will be answered by a Cancer Information Specialist.
Angel Flight America
The Angel Flight America national network comprises six autonomous regional
Angel Flight organizations, as well as Mercy Medical Airlift. Members of Angel
Flight™ provide access for people in need of free air transportation to
specialized health care facilities or distant destinations due to family,
community or national crisis. With advance notice, patients requiring oxygen can
usually be provided with a small, aluminum oxygen canister.
CancerCare
Toll Free Number: (800) 813-4673 (800-813-HOPE)
CancerCare is a non-profit social service agency that provides counseling and guidance to help cancer patients, their families, and friends cope with the impact of cancer. Services are provided by trained oncology social workers and are without cost.
CancerCare services include:
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Telephone counseling provided individually or through professionally-facilitate d support groups
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Online support groups for all types of cancer, caregivers and the bereaved -- all moderated by professional social workers.
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Face-to-face counseling, offered only at CancerCare locations in New York, New Jersey & Connecticut
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Booklets, Cancer Fact Sheets and other publications, some of which may be downloaded from the Web site (Spanish materials available)
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CancerCare Connect Telephone Education Workshops -- free, educational seminars on a variety of cancer-related topics, conducted by cancer experts on an almost weekly basis. Pre-registration is required. Archived workshops may be accessed on the Web site.
All CancerCare services are also offered through two specialized programs:
CancerCare for Kids
This program is designed for children with cancer, or children affected by a loved one's cancer diagnosis. Oncology social workers offer practical support, education, and advise to parents, and counseling to children to help them understand the disease.
It's Time to Focus on Lung Cancer
(877) 646-5864 or the toll-free number listed above
Addresses the particular issues of lung cancer patients and their families, including "Lung Cancer 101", lung cancer education slides (can be viewed or downloaded), Coping with Lung Cancer publication, and more. In addition to individual counseling, support groups for the lung cancer patient (online or phone), and the lung cancer caregiver (online) are also available.
Lance Armstrong Foundation
To speak with an oncology social worker:
Toll Free Number: (866) 235-7205
Founded in 1997 by cancer survivor and champion cyclist Lance Armstrong, the Lance Armstrong Foundation
(LAF) believes that in the battle with cancer unity is strength, knowledge is power, and attitude is everything. From the moment of diagnosis, LAF provides the information and tools people with cancer need to live strong. LAF serves its mission through education, advocacy, public health and research programs.
The Lance Armstrong Foundation partnered with CancerCare in 2004 to develop
LIVESTRONG SurvivorCare. This program is designed to help people face the everyday challenges of cancer through education, qualified referrals and counseling services.
Lotsa
Helping Hands
Lotsa Helping Hands is a simple, immediate way for friends, family, colleagues, and neighbors to assist loved ones in need.
It's an easy-to-use online calendar for private groups, specifically designed for organizing helpers for the patient in need.
It makes it easier for everyone to pitch in with meals delivery, rides, and
other tasks necessary for life to run smoothly during a crisis.
Medicare
Rights Center
Through direct telephone hotline services, educational programs, publications,
and public policy initiatives, the Medicare Rights Center enables people on
Medicare to understand their Medicare rights and benefits and to make informed
choices regarding their health care options. MRC is a not-for-profit,
nongovernment organization.
MRC's web site has a searchable database that identifies telephone numbers for
State Health Insurance Assistance Programs (SHIPs), which offer help to people
with Medicare coverage and their families with health insurance choices,
Medicare rights and protections, dealing with payment denials or appeals, and
complaints about care or treatment, and Medicare bills.
Medicare Access for Patients - Rx
Free, step-by-step guide to help choose the right Medicare prescription plan
that's best for you. Answers to over a dozen frequently asked questions
about the Medicare Prescription Drug Coverage. Each question ‘clicked’ will
provide a number of links to fact sheets and interactive tools, many of which
are provided in languages other than English. Also has a state-by-state
listing of other possible resources and programs
National Coalition for Cancer
Survivorship
The National Coalition for Cancer Survivorship (NCCS) is the oldest survivor-led
advocacy organization working on behalf of this country's nearly 10 million
cancer survivors and the millions more touched by this disease. NCCS' mission is
to advocate for quality cancer care for all Americans. NCCS' focus is on
advancing public policy issues that affect cancer survivors on the federal level
and providing tools and education materials to individuals in order to help them
become advocates for themselves or someone else. NCCS provides:
- Publications on many topics, including employment and health insurance, as it relates to cancer
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Cancer Survivor Toolbox--a free program that teaches skills that can help people with cancer meet the challenges of their illness.
National Alliance for Caregiving
Provides support and advocacy information to family caregivers and
professionals, and works to increase public awareness of issues facing family
caregiving. The Web site offers tips for caregivers, research reports, and
reviews of books/materials on caregiving.
National Bone Marrow Transplant Link
A nonprofit organization that serves as an information center for prospective
Bone Marrow Transplant (BMT) patients as well as a resource for health
professionals. nbmtLink provides one-on-one peer support to BMT patients
and their families over the telephone. BMT patients and caregivers are carefully
matched with specially trained peer-support volunteers.
National Cancer Institute
NCI's services include:
- Cancer Information Service (CIS)
1-800-4-CANCER (1-800-422-6237)- provides accurate, up-to-date information about cancer to patients and their families, health professionals, and the general public. -
Materials for health professionals, patients, and the public, including information from PDQ (Physician's Data Query) about cancer treatment, screening, prevention, supportive care, and clinical trials, and CANCERLIT, a bibliographic database.
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Comprehensive clinical trials information for patients, health professionals, and the public. Information is available on understanding trials, deciding whether to participate in trials, finding specific trials, plus research news, and other resources.
National Center for Complementary and
Alternative Medicine
The National Center for Complementary and Alternative Medicine (NCCAM), a
component of the National Institutes of Health (NIH), is dedicated to exploring
complementary and alternative medicine (CAM) healing practices in the context of
rigorous science. It also trains CAM researchers and disseminates authoritative
information to the public and professionals. Information is provided
through the NCCAM Clearinghouse, which offers publications, searches of
scientific and medical literature on CAM topics, referrals, and other services.
Many of NCCAM's resources are also available on the NCCAM web site.
National Lymphedema Network
The National Lymphedema Network (NLN) is a nonprofit organization providing
assistance to lymphedema patients, health care professionals, and the public by
disseminating information and education on the prevention and management of
lymphedema.
National Marrow Donor Program
The National Marrow Donor Program (NMDP) helps people who need a life-saving
marrow or blood cell transplant, but do not have a matched donor in their
family. Services of NMDP:
- Connects patients, doctors, donors and researchers to the resources they need to help more people live longer, healthier lives.
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Provides a registry of volunteer donors and cord blood units (the largest listing in the world)
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Supports patients and their doctors throughout the transplant process, from diagnosis through survivorship, through the NMDP's Office of
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Patient Advocacy (OPA) matches patients with the best donor or cord blood unit using innovative science and technology.
Partnership for Prescription Assistance
The Partnership for Prescription Assistance (PPA) brings together America's
pharmaceutical companies, health care providers and community groups to help
qualifying patients who lack prescription coverage get the medicines they need
through the public or private program that's right for them. PPA offers a single
point of access to more than 475 public and private patient assistance programs,
including more than 150 programs offered by pharmaceutical companies. Those
eligible for a patient assistance program receive medications at no- or
low-cost.
The PPA web site lists PhRMA (see next listing) member company Patient Assistance Programs (including Ross Medical Nutritionals, the manufacturer of a variety of nutritional supplements such as Ensure), as well as state-specific government and humanitarian programs. Programs for nicotine replacement therapy (NRT) medications, used for smoking cessation, can also be accessed through the Web site. Eligibility for the programs can be determined via the toll free number or the PPA Web site (the service is completely confidential). Applicants will be asked:
- Age
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State of residence and zip code
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Estimated gross annual household income & number of people living in household
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Brand name of prescription medications currently taking or prescribed
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Any current health insurance and/or prescription coverage, if applicable
Pharmaceutical Research
and Manufacturers of
America
The Pharmaceutical Research and Manufacturers of America (PhRMA) is a trade
association representing research-based pharmaceutical and biotechnology
companies. PhRMA provides information about member pharmaceutical companies and
drugs that are currently available, in clinical trials, or under development.
Young Survivor Coalition
The Young Survival Coalition (YSC) is dedicated to the concerns and issues that
are unique to young women age 40 and under with breast cancer. YSC seeks to
educate the medical, research, breast cancer and legislative communities and
serves as a point of contact for young women living with breast cancer. Local
groups throughout the United States meet monthly.
CDC Cancer Survivor
Resource Page
This page on the CDC web site contains links to national
organizations that provide services and resources to cancer survivors
Information for Long-term Survivors
NCI's Office of Cancer
Survivorship:
Post-treatment resources for survivors, including guidelines, fact sheets and
tips, pediatric guidelines, information on follow-up clinics, and a publications
list
Lance Armstrong Foundation:
Resources for survivors, in English and Spanish
NCI Cancer Bulletin special issue on cancer
survivorship:
Published in 2006, this issue of the Bulletin contains information and links for
survivors and caregivers.
Interactive online tools that help cancer survivors learn the long-term consequences of their treatment:
Information about and links to online decision-making tools, such as the
Harvard disease risk site, the NCI survivorship care plan, and NCI's list of
resources for predicting cancer risk.
ASCO treatment summary and care plan
templates: For survivors of breast or colorectal cancers. Information and
forms to help you keep a record of your cancer treatment history and follow-up
care
Page last updated 06/05/2008
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