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Internet
The Internet can be a powerful tool for gathering medical information, locating resources, learning about treatment options and finding support groups. In fact, many cancer patients and caregivers feel empowered as they use the Internet to educate themselves on the wide range of cancer-related issues they face.
However, wading through the sheer volume of information available on the Internet can be overwhelming. Having the tools to assess the credibility, accuracy and authenticity of a website will help you gather accurate and reliable cancer information. Here are some Internet tips to keep in mind:
How to evaluate a website:
ACCURACY
Is the web information correct? Verify that the links on the website are active and up todate. Look for date “last updated” usually at the bottom of the web page to see how current the information is.
CREDIBILITY
What kind of website are you visiting? By looking at the domain name you can determine the type of site you are on and the kind of information that might be presented. Some common domain names include:
· edu – educational sites - Educational domains usually support knowledge and learning.
· gov – government sites – Commonly include public information, as well as
statistical data.
· org – nonprofit organization sites - Organizational sites may present information
supporting a particular cause or representing a particular point of view.
· com/net – commercial and network sites. Commercial and network domains often
promote business and/or products.
Determine the bias of information presented. Are advertisements distinctly separate from content? Do any of the sponsors sell products related to site content? Are there any conflicts of interest among the sponsor of the site, advertisers on the site and the information on the site?
AUTHENTICITY
Verify the legitimacy of a person or organization by contacting the organization through its mailing address or phone number. Email can be created by anyone and therefore is not a sufficient means of verifying an organization’s identity. Contact information can usually be found on the homepage or “About Us” or “Contact” pages of the site. Remember: If you do not have a computer but would like to surf the Internet, you can visit your local public library. They provide free access to the Internet and the librarians may be available to assist in you in your research.
Below you will find a list of trusted, credible websites on a range of important cancerrelated topics. Remember that the Internet is not a substitute for receiving appropriate medical care
General Cancer:
Support, Information, Education & Financial Assistance
American Cancer Society - Publications, Patient Navigation, Road To Recovery/Transportation Program, Clinical Trials Matching & Referral Service, Financial Assistance, Survivors Network (Eng., Span.), Reach To Recovery, Look Good...Feel Better, Camp Adventure, Wigs (for those with limited insurance or financial resources).
www.cancer.org
Association of Cancer Online Resources - Information, access to over 100 cancer-related mailing lists, support, resources.
www.acor.org
Association of Oncology Social Work (AOSW) - a non-profit organization dedicated to the enhancement of psychosocial services for people with cancer and their family members. The AOSW website links to oncology resources such as cancer organizations and disease-specific sites for adults and children.
www.aosw.org
CancerCare - Information, support services, publications, educational workshops, resource database, financial assistance, links to other cancer-related web sites.
www.cancercare.org
Cancer Hope Network - Support Services
www.cancerhopenetwork.org
Cancer.com - Maintained by Orthobiotech Products: extensive listing of links to cancerrelated sites for information, advocacy, education, resources, and support.
www.cancer.com
Cancereducation.com - General info website, includes transcripts and webcasts of many useful programs.
www.cancereducation.com
Cancer Information Service - Maintained by the Cancer Information Service: Information, education, links to other cancer-related sites.
www.cancerinfonet.org
Cancer.net, Patient information website of the American Society of Clinical Oncology. Formerly People Living with Cancer website.
www.cancer.net
Cancer Research and Prevention Organization - Information, education, links, support.
www.preventcancer.org
Cancersymptoms.org - Information, Q&A about several common cancer and treatmentrelated symptoms.
www.cancersymptoms.org
Clinicaltrials.gov - A service of the National Institutes of Health Information about clinical trials, database of clinical trials.
www.clinicaltrials.gov
Cycle of Hope - Information, resources, support, links.
www.cycleofhope.com
Fighting Chance - Counseling and Resource Center for Cancer Patients
www.fightingchance.org
Gilda’s Club - Information, resources, links, support.
www.gildasclub.org ....................................................................... 888-GILDA-4-U
Look Good Feel Better - Cosmetology and haircare during cancer treatment, provided by the American Cancer Society, program is offered on both the North and South Fork of Long Island. A free gift tote bag of $250 in cosmetics is provided to each participant.
www.lookgoodfeelbetter.org........................................................... 800-395-LOOK
Medem.com - Information, education, library resources.
www.medem.com............................................................................ 877-926-3336
Medlineplus - Information, links, resources.
www.nlm.nih.gov/medlineplus
MD Anderson Cancer Center - Information, education, support and resources.
www.mdanderson.org
National Cancer Institute - Information (cancer by type, research, clinical trials), education, publications.
www.cancer.gov ............................................................................. 800-4-CANCER
Oncolink - Information, education, support and resources.
www.oncolink.upenn.edu
The Oncology Nursing Society - a professional organization of more than 33,000 registered nurses and other healthcare providers dedicated to excellence in patient care, education, research, and administration in oncology nursing.
www.ons.org
National Coalition of Cancer Survivorship - Information, advocacy, resources, links, support.
www.canceradvocacy.org .............................................................. 301-650-9127
Cancer Specific Information and Support
Bladder Cancer
Bladder Cancer Web Café
www.blcwebcafe.org
Information, resources, email discussion list, support.
United Ostomy Association
www.uoa.org ................................................................................... 800-826-0826
Information, support, education, advocacy.
Brain Tumor
National Brain Tumor Foundation
www.braintumor.org ....................................................................... 800-934-2873
Research, information, resources.
American Brain Tumor Association
www.abta.org
Research, information, resources.
The Traumatic Brain Injury Helpdesk for Caregivers
www.tbihelp.org
Information on traumatic brain injury, support, education, resources.
Clinical Trials and Noteworthy Treatments for Brain Tumors
www.virtualtrials.org
Information, resources, support, links.
Breast Cancer
SHARE
www.sharecancersupport.org ......................................................... 866-891-2392
Self-help for women with breast and ovarian cancer.
Susan G. Komen for the Cure
www.komen.org ............................................................................... 800-462-9273
Aims to eradicate breast cancer as a life-threatening disease by advancing research,
education, screening and treatment.
Y-ME National Breast Cancer Organization
http://www.y-me.org/
Support, information and resources.
Cervical Cancer
The National Breast and Cervical Cancer early detection program
www.cdc.gov/cancer/nbccedp/ ....................................................... 888-842-6355
Provides screening services to underserved woman.
The National Cervical Cancer Coalition
www.ncc-online.org/
Advocacy and medical information on cervical cancer.
Colorectal Cancer
Colon Cancer Alliance
http://www.ccalliance.org/
Information, support and resources.
Colorectal Cancer Network
http://www.colorectal-cancer.net/
Information, support and resources
Complementary Therapies
Memorial Sloan-Kettering Cancer Center, Integrative Medicine Service
www.mskcc.org/aboutherbs
Information about herbs, botanicals and other products.
Gynecological
Ovarian Cancer National Alliance
www.ovariancancer.org .................................................................. 202-331-1332
Information, education, support, links.
SHARE
www.sharecancersupport.org ......................................................... 866-891-2392
Self-help for women with breast and ovarian cancer.
The Women’s Cancer Network
www.wcn.org
Information, education, support, links.
Kidney Cancer
The Kidney Cancer Associatoin
www.kidneycancerassociation.org .................................................. 800-850-9132
Information on medical interventions, research and advocacy on behalf of patients.
Leukemia, Lymphoma, Myeloma
Leukemia and Lymphoma Society
www.leukemia-lymphoma.org ......................................................... 800-955-4572
Information, education, resources, financial assistance, support.
The Bone Marrow Foundation
www.bonemarrow.org ..................................................................... 800-365-1336
Information, education, support, resources, financial assistance.
National Marrow Donor Program
www.marrow.org ............................................................................. 800-627-7692
Connect patients, doctors, donors and researchers to resources they need to help more people live longer, healthier lives.
Lymphoma Research Foundation
www.lymphoma.org ........................................................................ 800-235-6848
Information, education, support, resources, advocacy.
Multiple Myeloma Program, The Cleveland Clinic Foundation
www.ccf.org/cc/mm ......................................................................... 800-223-2273
General information on clinical trials, research and medical developments.
International Myeloma Foundation
www.myeloma.org ........................................................................... 800-452-2873
Free informational packet, hotline numbers, support group listings, info about patient to patient directory.
Liver Cancer
LiverTumor.org
www.livertumor.org/default.asp
Information about primary and metastatic liver tumors. Lists and explains treatment options.
Lung Cancer
Lung Cancer Alliance
http://www.lungcanceralliance.org/
Information, education, support and resources.
Lung Cancer Information Library: Medicine OnLine
www.meds.com/lung/lunginfo.html ................................................. 203-375-7300
Comprehensive information and frequently asked questions on all types of lung cancer, screening and treatment.
Lung Cancer Research Foundation
www.lungcancerresearchfoundation.org ........................................ 212-332-4403
Grass roots organization in support of new and innovative research.
Pancreatic Cancer
Pancreatic Cancer Action Network (PanCan)
www.pancan.org ............................................................................. 877-272-6226
New information for people with pancreatic cancer.
The Johns Hopkins University Pancreatic Cancer Home Page
www.path.jhu.edu/pancreas
Information on treatment, research and links to other pancreatic cancer websites.
Prostate
Us Too
www.ustoonewyork.org ................................................................... 212-946-1494
Prostate cancer survivor support and educational group.
Cap Cure
www.capcure.org
The association for the cure of cancer of the prostate. ................... 800-757-2873
Oral, Head and Neck Cancer
SPOHNC (Support for People with Oral, Head and Neck Cancer)
www.spohnc.org .............................................................................. 800-377-0928
Newsletter, resource guide, cookbook.
The Oral Cancer Foundation
www.oralcancer.org
Information, support, resources, email newsletter.
Let’s Face It
www.faceit.org ................................................................................ 360-676-7325
Information, support, resources, network for people with facial disfigurement, their family and friends.
Sarcoma
Kristen Ann Carr Fund Sarcoma Forum
www.sarcoma.com
Skin Cancer
The Skin Cancer Foundation
www.skincancer.org ........................................................................ 800-SKIN-490
Up-to-date information on the prevention, diagnosis and treatment of skin cancer.
Melanoma Patient’s Information Page
www.mpip.org
Provides support and information to melanoma patients.
Thyroid
Thyroid Cancer Survivors Association
www.thyca.org ................................................................................ 877-588-7904
Supports education, research and communication among patients, physicians and families.
Testicular
Testicular cancer Information from the National Cancer Institute
http://www.cancer.gov/cancertopics/types/testicular
Further Internet Resources
Young Adults Living with Cancer
Planet Cancer
www.planetcancer.org
Support, information, message boards.
The Ulman Fund
www.theulmanfund.org
Support, information, message boards, scholarship fund.
Young Survival Coalition
www.youngsurvival.org
Breast cancer specific (for women under 40) support, information, message boards, advocacy.
Rolling to Recovery
www.rollingtorecovery.org
Colon cancer specific links to information.
The Sam Fund
www.thesamfund.org
Support scholarships, links for young adults with a history of cancer.
Lymphedema Management
National Lymphedema Network
www.lymphnet.org .......................................................................... 800-541-3259
Information, resources, research, support.
New York University/ Rusk Institute
www.rusknyu.org
Licensed Therapists
New York City Lymphedema Support Group
www.nyclymph.freeservers.com ...................................................... 212-717-4810
Lymphatic Research Foundation
www.lymphaticresearch.org ............................................................ 516-625-9675
Research site seeking people with lymphedema to register on their site.
Circle of Hope, Lymphedema Foundation, Inc.
www.lymphedemacircleofhope.org ................................................. 203-758-6138
Resources, education.
Caregiver Information
National Family Caregiver Association
www.nfcacares.org .......................................................................... 1-800-896-3650
Information, advocacy, message boards, publications.
National Alliance for Caregiving
www.caregiving.org
Information, suggested reading, resources.
Family Caregiver Alliance
www.caregiver.org .......................................................................... 415-434-3388
Shared Experience
www.sharedexperience.org
Resources, support.
Well Spouse
www.wellspouse.org
Support, information, internet chats, message boards.
Soaring Words
www.soaringwords.org
Support for parents and children when a child is ill.
Hospice and Palliative Care
National Hospice and Palliative Care Organization
www.nhpco.org ............................................................................... 703-837-1500
Information, program locator.
National Hospice Foundation
www.hospiceinfo.org ....................................................................... 703-516-4928
Information, resources, benefits, program locator.
Hospice Web
www.hospiceweb.com
Information, hospice locator.
Hospice Net
www.hospicenet.org
Information, support.
Beth Israel Hospital, New York City
www.stoppain.org
Information, support, education, resources, online conferences.
Growth House
www.growthhouse.org
Information, education, chat rooms.
American College of Physicians
www.acponline.org/public/h_care
Home Care Guide for Advanced Cancer: A guide for family, friends, and loved ones caring for a person with advanced cancer at home.
Pain Management Issues
Partners Against Pain
www.partnersagainstpain.com
Information, education, links to pain management resources and support groups.
Pain.com
www.pain.com
Information, education, message boards, links.
Insurance/Disability/Financial
Social Security
www.ssa.gov .................................................................................... 800-772-1213
Medicare Web Site
www.medicare.gov ..........................................................................800-MEDICARE
Information on Medicare insurance policies.
Medicare Rights
www.medicarerights.org
Largest independent source of Medicare information and assistance in the U.S.
Gay Men’s Health Crisis
www.gmhc.org/living/insure.html
Information on disability, insurance and Social Security.
National Institute on Disability and Rehab Research
www.ed.gov/offices/OSERS/NIDRR
Resources, rehabilitation information and advocacy.
New York State Elderly Pharmaceutical Insurance Coverage (EPIC)
www.health.state.ny.us/nysdoh/epic/faq.html
State-sponsored prescription plan for seniors who need help paying for drugs.
Together Rx
www.together-rx.com
Prescription program for senior citizens.
Benefits Check Up
www.benefitscheckup.com
Website providing public benefits screening.
Families USA
www.familiesusa.org
Information and resources on healthcare programs and legislation on a state-by-state basis.
Employment/Legal Rights
Law Help
www.lawhelp.org/NY
Legal assistance for low-income New Yorkers.
Patient Advocate Foundation
www.patientadvocacy.org ............................................................... 800-846-7444
Information,education and advocacy for cancer patients and all health issues.
Cancer and Careers
www.cancerandcareers.org
Resources and information for working women with cancer.
Post-Treatment Resource Program – Memorial Sloan-Kettering Cancer Center
http://www.mskcc.org/mskcc/html/19409.cfm ................................. 212-717-3527
Support groups, seminars, workshops, and practical employment and insurance information.
General Services for Children with Cancer and Their Families
Candlelighters Childhood Cancer Foundation
www.candlelighters.org ................................................................. 800-366-2223
Peer support network for parents, newsletter and insurance concerns.
The Children’s Cause, Inc.
www.childrenscause.org ................................................................ 301-562-2765
Dedicated to accessing safer and improved treatment for childhood cancer.
Children’s Organ Transplant Association, Inc. (COTA)
www.cota.org ................................................................................. 800-366-2682
Provides fundraising assistance for children and young adults needing life-saving transplants.
Make-A-Wish Foundation of America
www.wish.org ................................................................................. 800-722-9474
Grants wishes of children, ages 2-18, with life-threatening illnesses.
Starlight Starbright Children’s Foundation
www.starlight.org........................................................................... 800-315-2580
Provides programs addressing social, emotional and medical aspects for children coping with serious illness.
Pediatric Brain Tumor Foundation (PBTF)
www.pbtfus.org .............................................................................. 800-253-6530
Provides free educational resources for families; educational scholarship program for pediatric brain tumor survivors.
National Children’s Cancer Society
www.nationalchildrenscancersociety.org
Promotes children’s health, through financial and in-kind assistance, advocacy, education and support.
Tip # 18 Cancer Survivorship & Follow-Up Care
Due to early detection, improved screening and targeted and specialized treatments for cancer, many people are cured of their disease or live with their disease controlled or in active remission.
Once your active cancer treatment is complete, a wide range of information is available to you. To help with this transition go to www.cancer.net. Information such as managing side effects and late effects is avaiable.
It is most important that you develop an individualized aftercare program with your oncologist when treatment ends. Primary care physicians do not necessarily have experience regarding your type of cancer and its side effects. Guidelines for follow-up care include annual tests or procedures.
For further guidance, contact Fighting Chance at 631-725-4646.
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