Survivorship An ESMO-ECPC guide for patients in collaboration with IPOS
Survivorship is a unique and ongoing experience, which is different for each person and those close to them. A key to survivorship is to regain, as far as possible, the important aspects of your life before cancer, and to find new pathways to a satisfactory life going forward. This Patient Guide on Survivorship is created by European Society for Medical Oncology (ESMO) and European Cancer Patient Coalition (ECPC) in collaboration with International Psycho-Oncology Society (IPOS) in order to help you and people like you at this important time in your life. In this guide you can find information on support in coping with the new reality, life after initial treatment, preventive health, and follow-up care. It also enables keeping a personal health record / survivorship care planning.
Patient Forums and Support Groups in Cancer
Administration on Aging, Department of Health and Human Services:
Information for older persons, families, practitioners, researchers, students, and the aging network.
American Cancer Society:
Dedicated to helping persons who face cancer. Supports research, patient services, early detection, treatment and education.
American Urological Association:
Written material, access to about 400 national support groups, no physician referrals.
Asociación Española Contra el Cáncer (AECC) Junior / Spanish Cancer Society Junior:
A resource in Spanish for pediatric cancer patients and their families.
http://www.aeccjunior.org – Only in Spanish/Sólo en español
Bone and Cancer Foundation:
Information for patients and families on the causes and treatment of cancer involving bone.
Breast Cancer Network of Strength:
Written materials; access to support groups nationwide; will provide list of specialists in Chicago area. Lists of breast- cancer facilities nationwide.
Canadian Virtual Hospice:
Information and support on palliative and end-of-life care, loss and grief.
Cancer Care, Inc:
Written material, telephone support groups and counseling; will locate other community services in patient area.
International list of support groups. Also offers links to resources listed by country.
Candlelighters Childhood Cancer Foundation:
Written materials, over 400 peer support groups, and contacts for all family members nationwide.
Canadian-based, bulletin board, links, and support for caregivers.
Caregiver Survival Resources:
Free, easy-to-create websites to help connect friends and family for support during a health crisis or recovery.
FEFOC (Fundación para la Educación Pública y la Formación en Cáncer):
A Spanish resource for the public and patients regarding many different cancer topics. Most of the websites are in Spanish, but FEFOC expects to have all of the translated to English as well in the near future.
Featuring a downloadable workbook on coping with cancer, a weekly live chat and other resources.
E-mail [email protected]. In the body, type, “subscribe HOMEHLTH (your name).”
Phil Kemelor, TEL:
(301) 816-8950 x418
I’m Too Young For This! Cancer Foundation For Young Adults:
A TIME Magazine Best 50 Website 2007, the I’m Too Young For This! Cancer Foundation For Young Adults is a global support community for young adults affected by cancer who get busy living and rock on. Our mission is to end isolation and improve quality of life by providing one-stop access to hard to find resources, peer support and social networks.
Matches a person touched by cancer with a mentor of similar experience to ask personal questions and receive support from someone who is uniquely familiar with the experience.
International Confederation of Childhood Cancer Parent Organisations (ICCCPO):
Bringing together information about parent organisations around the world, and providing links to sites which contain information of value for parents and their families.
The Lance Armstrong Foundation unites, inspires and empowers people affected by cancer.
Living Beyond Breast Cancer:
Helpline and a wide variety of breast-cancer related information.
MAHAK is an organization involved nationally (Iran) and internationally in cancer of children and offers services in the fields of Welfare, Medical treatment & Research. In the section of welfare, MAHAK supports the children suffering from cancer and their families in full. Treatment of children with cancer is performed according to the latest methods and based on the last medical know how. In the field of research, the organization engages itself to learn more on diagnostic and preventative measures as well as treatment of different types of cancer.
For five years, this nonprofit group has been providing men’s cancer support and psychosocial programs free and open to the public, and serves as a proven critical resource to men and their families world wide. Their website contains two hundred pages of helpful prostate cancer information, including dozens of pages in English, Spanish, French, Italian and Hebrew.
Mesothelioma Cancer Alliance
Provides a range of information that talks about Mesothelioma cancer itself, the types of treatment that is expected, and preventative measures. Since mesothelioma is a rare cancer, they put a big focus on the care a patient needs.
Helping victims and their families get assistance with medical treatment and travel costs.
Our mission is to guide mesothelioma patients toward answers, information, and healthcare solutions.
Mesothelioma + Asbestos Awareness Center
An educational resource for patients and caregivers looking to learn more about mesothelioma such as cancer care, treatment, and community support.
Mesothelioma Center at Asbestos.com
provides free informational books, packets and a Patient Advocacy program that works 1-on-1 with individuals to help them find local doctors, treatment centers and support groups.
Mesothelioma Help Now
Our main focus is to provide accurate and helpful information, support and resources to patients and their loved one. We want to help them better understand their diagnosis, how to find treatment, and all options available to them.
Mesothelioma Treatment Community
Mesothelioma Treatment Community presented on TreatMesothelioma.org is dedicated to assisting, guiding, and helping mesothelioma patients from around the world. The key focus for them is to promote palliative and immediate care because they exist to not only inspire hope during these unbearable times but to also provide the information needed to improve the life expenctancy of the patient. TreatMesothelioma.org has compiled over 120 pages of resources, infographs, articles, and educational videos so that you can learn everything you need to know about mesothelioma cancer. If by chance you need a bit more guidance, they have a team of volunteers ready to answer any questions you may have. TreatMesothelioma.org is also the largest online resource for mesothelioma treatment options and alternative/complementary therapies. Be earning this title, they are designed to help guide patients and their loved ones toward the answers and support they need to improve their mesothelioma prognosis, life expectancy, and equally important… their quality of life. https://www.treatmesothelioma.org/mesothelioma/
The Park Ridge Center:
The Center’s bulletin focusing on spirituality in health care.
The Prostate Cancer Foundation:
Goal is to find better treatments and a cure for recurrent prostate cancer. Provides funding for cutting-edge prostate cancer research and works with research scientists, physicians, government officials and biopharmaceutical industry executives to remove barriers that impede progress toward a cure. Advocates for greater awareness of prostate cancer and more governmental resources for fighting the disease.
Voicing My Choices:
This end-of-life planning guide for adolescents and young adults is now available online.
Pain Management and Policy in Oncology
Agency for Health Care Policy and Research:
Lists various resources on pain and cancer pain.
American Academy of Pain Medicine (AAPM):
Collection and reporting of clinical outcomes information.
American Cancer Society, National Cancer Institute:
Questions and answers about pain control.
American College of Physicians:
Download the book “Home Care Guide for Advanced Cancer:
When Quality of Life is the Primary Goal of Care.” For family, friends, and hospice workers caring for persons with advanced cancer at home.
American Pain Society:
Calendar, database of archived APS Bulletin articles, and resources for patients and professionals.
American Society of Clinical Oncology:
Connects site visitors to information and to each other.
Association of Cancer Online Resources:
Online resources for cancer patients, caregivers, health professionals, and basic research scientists.
Wide range of accurate, credible cancer information from the National Cancer Institute.
City of Hope Pain and Palliative Care Resource Center:
Clearinghouse of information & resources on improving the quality of pain management.
The International Association for the Study of Pain:
Dictionary of pain terminology and curriculum outline on the study of pain in medical schools.
Institute for the Study of Health and Illness:
Information on various programs for health professionals working with people with life-threatening illnesses.http://www.commonwealhealth.org/
The Journal of Clinical Oncology:
Drug policy research institute:
Searchable online library
Memorial Sloan-Kettering Cancer Center’s Web Site:
provides a wide range of information for medical professionals, patients, their families, and the general public.
Cancer statistics, disease information, and abstracts from National Cancer Institute.
OncoLink, The University of Pennsylvania Cancer Resource:
Fast access by disease, specialty, etiology; current clinical trials, and more.
Pediatric Pain Research Lab:
Affiliated with Dalhouise University:
Provides professional, research, and self-help resources related to children in pain.
NCI’s comprehensive cancer database, extensive register of ongoing and closed clinical trials.
Pain & Policy Studies Group:
All state intractable-pain-treatment laws, regulations, and state medical board guidelines.
Resource Center for State Cancer Pain Initiative:
Provides an advocacy network for cancer pain.
Roxane Pain Institute:
Educational materials on cancer and AIDS pain management. Downloadable pain slide show, dates of lectures/seminars, and links to patient and professional “libraries.”
The Susan G. Komen Breast Cancer Foundation:
Written material about 30 support groups nationwide.
Talarian Map-Cancer Pain:
AHCPR Clinical Practice for Cancer Pain:
Hospice and Palliative Care
Link to editors and on-line newsletter.
American Academy of Hospice and Palliative Medicine:
Events & meetings, products & publications, related links.
Improving Care at the End of Life:
IOM Committee and publication information.
Click here for report
The Association for Death Education and Counseling:
Educational resources, programs, links, publications, etc.
Children’s Hospice International:
Includes a resource directory for hospice programs around the world.
Compassion and Choices:
Information related to living wills, etc.
Reviews of research evidence about the effects of health care. Offered in seven languages.
Compassion in Dying:
Resources, news, support materials, legal advocacy, affiliates etc. http://www.CompassionInDying.org
Resources for patients and families facing life-limiting illness.
Monthly guide to Best of the Net sites for life-threatening illness and bereavement.
Hospice Foundation of America:
Information about hospices and hospice care.
International Association for Hospice and Palliative Care:
Featuring an International directory of hospice and palliative care services, a book and video shop, and more.
Focus is improving end-of-life care. Provides links, electronic newsletter, online discussion, and more.
National Association for Home Care:
Programs and publications, newsletter, and related links.
National Conference of State Legislatures:
Links to legislation related to end-of-life issues in states.
Open Society Institute:
International Palliative Care Initiative:
Project information, funding initiatives, newsletter, media and publications, and related links.
The Palliative Medicine Program:
Provides a variety of information and educational materials about pain management and palliative care.
The Recovery Village:
Dedicated to helping those struggling with substance abuse into recovery. We understand the unique responsibilities of caregivers and how their selfless role can be both rewarding and stressful, causing some to turn to various forms of substance abuse to cope; we believe education can help prevent this. Our new resource outlines the mental effects of caregiving, the signs and consequences of substance abuse, and how to get help if they are using substances to cope.
The Robert Wood Johnson Foundation:
Home page providing grant application and outcome information, library, programs and projects, media, link to Last Acts.
Shaare Zedek Cancer Pain and Palliative Care Reference Database:
Public service provided in conjuction with Roxane Laboratories and The Roxane Institute. Searchable database of references related to cancer pain and palliative care.