Resources for CCA Patients
Below are a list of web sites I have found extremely helpful as I navigate through my cancer journey.
American Cancer Society http://www.cancer.org/docroot/home/index.asp Helpful cancer related topics. Cholangiocarcinoma information is found under “Bile Duct Cancer” in Cancer Topics.
American Liver Foundation http://www.liverfoundation.org/ , an organization founded by the American Association for the Study of Liver Disease, AFL’s mission is to facilitate, advocate and promote education, support and research for the prevention, treatment and cure of liver disease.
American Society of Clinical Oncology http://www.asco.org/portal/site/ascov2 The American Society of Clinical Oncology is a non-profit organization with the overarching goals of improving cancer care and prevention. More than 27,000 oncology practitioners belong to ASCO, representing all oncology disciplines and subspecialties. Members include physicians and health-care professionals in all levels of the practice of oncology.
Cancer Care http://www.cancercare.org/ a national nonprofit organization that provides free, professional support services for anyone affected by cancer.
CanLiv – The Hepatobiliary Cancers Foundation http://canliv.org/CanLiv was created by a group of physicians, scientists, and dedicated individuals who are committed to advancing knowledge, education, research and treatment of hepatobiliary cancers.
Cholangiocarcinoma Foundation http://www.cholangiocarcinoma.org/ Provides helpful insight for newly diagnosed patients, links to major cancer centers actively conducting research on cholangiocarcinoma and discussion boards and live chat for cholangio patients, family and caregivers.
Chemocare.com http://www.chemocare.com A Program of the Scott Hamilton CARES initiative with content provided by the Cleveland Clinic, this helpful website provides the latest information about chemotherapy to patients and their families, caregivers and friends. Simple, easy to understand explanations of what chemotherapy is, the different types of approved chemotherapeutic agents, comprehensive explanation of side effects and how to manage them as well as diet and nutrition guidelines.
Clinical Trials Web Site http://clinicaltrials.gov/ A service of the National Cancer Institute, this is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial’s purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals.
ERCP http://digestive.niddk.nih.gov/ddiseases/pubs/ercp/ ERCP stands for Endoscopic Retrograde Cholangiopancreatography. It is a radiographic guided endoscopic procedure for physicians to examine the bile ducts. I have not had one, but many cholangio patients do and this site from the National Digestive Diseases Information Clearinghouse (NDDIC) provides an excellent description of the procedure.
International Liver Cancer Association http://www.ilca-online.org/ The International Liver Cancer Association (ILCA) aspires towards advancing research in the pathogenesis, prevention, and treatment of liver cancer.
National Cancer Institute http://www.cancer.gov/ The U.S. Government’s National Institute of Health web site. Very helpful are the NCI Drug Dictionary, Dictionary of Cancer Terms and Cancer Statistics.
National Center For Health Statistics (CDC) http://www.cdc.gov/nchs/fastats/ CDC resource center and statistics from A – Z.
National Coalition for Cancer Survivorship http://www.canceradvocacy.org The National Coalition for Cancer Survivorship is the oldest survivor-led cancer advocacy organization in the country, advocating for quality cancer care for all Americans and empowering cancer survivors.
National Comprehensive Cancer Network http://www.nccn.org/index.asp The NCCN provides evidence based cancer guidelines and Oncology Continuing Medical Education. A great resource for physicians and medical providers.
Patient Advocate Foundation http://www.patientadvocate.org/ A non-profit organization which provides effective mediation and arbitration services to patients to remove obstacles to healthcare including medical debt crisis, insurance access issues and employment issues for patients with chronic, debilitating and life-threatening illnesses.
Other sites of interest:
Cancer Compass http://www.cancercompass.com/ CancerCompass is a place to discover and share cancer-related information with people affected by cancer.
Cancer Information and Support Network http://www.cisncancer.org/ CISN is a grassroots organization composed of survivors, family members, friends and advocates to help patients and caregivers navigate their cancer journey.
Legal Information Network for Cancer (LINC) http://cancerlinc.org LINC is a nonprofit, community-based organization dedicated to helping people with the business side of cancer. Serving the Central Virginia community, LINC provides information, education, counseling and referral services for legal and financial assistance to individuals confronted with the overwhelming issues that arise from the diagnosis and treatment of cancer.
Liver Cancer Network http://www.livercancer.com/ Presented by the liver program at Allegheny General Hospital, this web site has been designed to provide information about the liver and liver cancer.
Livertumor.org is a specialty site offering fundamental information about the liver, cancers of the liver, and treatment for these cancers. This site is sponsored by AngioDynamics® and the website includes a special focus on radiofrequency ablation, or RFA, devices for the treatment of some types of liver cancer. http://www.livertumor.org/index.php
Mylifeline.org is a great resource for the cancer community and offers free, personal web sites for cancer patients, survivors and their caregivers. http://www.mylifeline.org/index.cfm
National Underinsured Resource Directory The Patient Advocate Foundation, has recently launched a ground-breaking new online tool called the National Underinsured Resource Directory which is intended to help underinsured individuals and families locate important resources and seek alternative coverage options or methods to cover their healthcare needs. The directory is available through an online interactive tutorial program, and a written publication that supports the program. The comprehensive online tool will help underinsured Americans faced with high out-of-pocket costs locate valuable resources and action steps to provide financial relief.
http://www.LibreClothing.com This is a great website featuring clothing for patients undergoing chemo or dialysis who may have a PICC or PORT line. ’bout time someone thought of this – kudos to Mandy Eckman and her team for designing and creating this clothing line! Much needed and much appreciated!!