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.
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.
Caregiver Survival Resources:
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.
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.
Treatment info and advice though US focus.
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 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 Pain Society:
Calendar, database of archived APS Bulletin articles, and resources for patients and professionals.
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:
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.
Compassion in Dying:
Resources, news, support materials, legal advocacy, affiliates etc. http://www.CompassionInDying.org
Resources for patients and families facing life-limiting illness.