SURVIVORSHIP COMMITTEE
Speak with a Cancer Specialist American Cancer Society Cancer Information Service Cancer Care for the Whole Patient. From Cancer Patient to Cancer Survivor: Lost in Transition National Cancer Institute. 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. 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. New Connections American Cancer Society American Cancer Society, Cancer Survivors Network Air Charity Network CancerCare Telephone counseling provided individually or through professionally-facilitate d support groups Online support groups for all types of cancer, caregivers and the bereaved -- all moderated by professional social workers. Face-to-face counseling, offered only at CancerCare locations in New York, New Jersey & Connecticut Booklets, Cancer Fact Sheets and other publications, some of which may be downloaded from the Web site (Spanish materials available) 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 Centers for Disease Control: Cancer Survivorship Komen for the Cure Lance Armstrong Foundation Lotsa Helping Hands Medicare Rights Center Medicare Access for Patients - Rx National Coalition for Cancer Survivorship 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 National Bone Marrow Transplant Link National Cancer Institute 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. 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 National Lymphedema Network National Marrow Donor Program Provides a registry of volunteer donors and cord blood units (the largest listing in the world) Supports patients and their doctors throughout the transplant process, from diagnosis through survivorship, through the NMDP's Office of Patient Advocacy (OPA) matches patients with the best donor or cord blood unit using innovative science and technology. ASCO Cancer Treatment Summaries Oncology by OncologySTAT Partnership for Prescription Assistance 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: State of residence and zip code Estimated gross annual household income & number of people living in household Brand name of prescription medications currently taking or prescribed Any current health insurance and/or prescription coverage, if applicable Pharmaceutical Research Young Survivor Coalition CDC Cancer Survivor Resource Page Information for Long-term Survivors Recently, interactive programs have become available in print and online to help patients take a more active role in their health care, from choosing a treatment plan with their physician, to identifying late effects and follow-up care after treatment ends. American Society of Clinical Oncology LiveStrong Care Plan. NCI's Office of Cancer Survivorship: National Comprehensive Cancer Network
1-800-ACS-2345 (227-2345)
Live help 24 hours a day, 7 days a week.
You can get information about cancer, help finding local services, and answers to your cancer questions.
1-800-4CANCER (422-6237)
Live help in English and Spanish,
Monday through Friday, 9 a.m.-4:30 p.m.
You can get your questions answered, get information about cancer, and learn what questions to ask your doctor about cancer.
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.
Committee on Cancer Survivorship: Improving Care and Quality of Life, Institute of Medicine and National Research Council of the National Academies.
http://www.nap.edu/catalog.php?record_id=11468#toc
Free information and support available on cancer survivorship issues via web or phone.
http://www.cancer.gov/cancertopics/coping
(Click here to view or download Overview of Plan from the CDC web site.)
http://www.healthinsuranceinfo.net
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.
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.
(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.
The Air Charity Network comprises seven autonomous member organizations that 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. The mission and purpose of all members is focused on "giving hope wings" to children and adults in need by leveraging aviation resources.
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:
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.
Millions of Americans are cancer survivors, living with, through, and beyond cancer. As the number of cancer survivors grows, CDC is working with partner organizations to help survivors throughout their cancer experience. This page on the CDC web site contains links to national organizations that provide services and resources to cancer survivors
The Connecticut Affiliate of Susan G. Komen for the Cure joins 124 other Affiliates worldwide and works locally to fulfill the promise to save lives and end breast cancer forever by empowering people, ensuring quality care for all, and energizing science to find the cures. Komen Connecticut's primary focus is on our local community – on educating the women and men in our state on the importance of early detection, funding free screening services and providing support to those who are diagnosed with breast cancer.
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 developLIVESTRONG SurvivorCare. This program is designed to help people face the everyday challenges of cancer through education, qualified referrals and counseling services.
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.
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.
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
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:
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.
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.
NCI's services include:
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.
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.
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.
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:
The ASCO Cancer Treatment Plan and Summary is a brief record of your cancer treatment. The forms provide a convenient way to store information about your cancer, cancer treatment, and follow-up care. The forms are also meant to give basic information about your cancer treatment and follow-up care to future healthcare providers.
The OncologySTAT web site promotes state-of-the-art cancer care by providing oncology professionals with instant access to the highest-quality news, expert opinion, and clinical information, including free full-text articles from over 100 Elsevier cancer-related journals. It also offers CME programs for cancer care professionals.
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.
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.
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.
This page on the CDC web site contains links to national organizations that provide services and resources to cancer survivors
ASCO treatment summary and care plan templates:
For survivors of breast, colorectal and lung cancers. Information and forms to help patients keep a record of their cancer treatment history and follow-up care.
http://oncolink.com/oncolife
The LIVESTRONG Care Plan was developed to help oncologists provide persons who have completed cancer therapy with a summary of the treatments received and a follow up "care plan”. The care plan summarize the potential late effects, their symptoms and treatment; recommendations for cancer screening (recurrence or new primary); psychosocial effects (including relationships and sexuality/fertility); financial issues (work, insurance and employment); recommendations for a healthy lifestyle, genetic counseling (if appropriate), effective prevention options; referrals for follow-up care and a list of support resources.
http://dccps.nci.nih.gov/ocs/follow.html
Post-treatment resources for survivors, including guidelines, fact sheets and tips, pediatric guidelines, information on follow-up clinics, and a publications list '
NCCN Treatment Summaries for People with Cancer™
help patients and families work with their doctors and make treatment decisions that are right for them. The NCCN Treatment Summaries for People with Cancer™ are based on the NCCN Clinical Practice Guidelines in Oncology™
