Medical Library Association Encyclopedic Guide to Searching and Finding Health Information on the Webedited by P. F. Anderson and Nancy J. Allee |
Sometimes, even after you ask those questions in the guides for new cancer patients, and have the answers, you may find the answers make little sense to you. This may sound overwhelming. It is overwhelming. You may want to have a friend or family member help with this. There are so many options, opinions, questions, and so much information, that having a helper to keep it all clear is a good idea. For someone who is not experienced with medical information, sometimes it is necessary to first learn more about general medical information and terminology before you can even begin asking your own informed questions about your own situation and options. Where in your body is the cancer? What is the purpose or function of that part of your body? What does that part of your body do? What type of body tissue is involved? Does the cancer involve, or can it involve, more than one part of your body? When you have a sense of the background and are ready to ask more specific questions about your own situation, you may find that some questions give better search results using layperson's terms, and others with medical jargon. It is good to know both the medical terms and the layperson's terms used to describe the anatomical area in the body, type of cancer and body tissue, diagnosis, treatment options, and other topics.
Does this mean don't use a regular Internet search engine? Well, it means don't start there. If you know your terms are fairly general, don't waste your time with a general search engine, but go directly to one of the better health search engines, such as MedlinePlus or healthfinder, or to one of the major cancer information sites, such as the National Cancer Institute (NCI), Association of Cancer Online Resources (ACOR), or Oncolink. For new patients, some experts recommend starting with a three-step approach. First, read at least one of the guidelines for the newly diagnosed cancer patient, and begin with what they recommend. Second, browse the information at one of the sites listed in the "One-Stop Shops" section below, both for general information as well as information on your diagnosis. Most of the resources from the U.S. government for patients are very clearly written, include illustrations, and are available in at least English and Spanish-sometimes other languages, as well. At the same time (the third step), you'll want to connect with other patients with a similar diagnosis. With around 100 patient support and discussion groups, the single best place for this online is ACOR at ACOR.org. If there is no discussion group for your diagnosis, someone will surely know of one or a related group that would be helpful to you.
The more technical and specific the terms, the larger the search engine that will be useful. If you are searching "anti-neoplastic agents," try also "antineoplastic agents" and antimetabolites (another similar term), or use all of the terms, for example:
Even with a very specific set of terms like this, in Google there are still more than 100 hits, but this is much more manageable and relevant than the almost 8,000 from just "antineoplastic agents." If you combine these with the name of a specific drug prescribed or recommended, you can focus the results even more, but if you are too focused, you may lose the most helpful information. For example, the same search with the word Prednisone included retrieved fewer than 30 hits, but these were from alternative medicine sites, drug sales sites, and schools teaching students guidelines for prescribing. None of this would be of much use to the health consumer. You'd probably do better to narrow the results by using the name of the cancer, rather than the name of the medication. Notice that in the search string examples, phrases used quotation marks to group the words that should appear together.
Recommended Search Terms
American Cancer Society (ACS): All about Breast Cancer: http://www.cancer.org/docroot/CRI/CRI0.asp
Breast Cancer Research Foundation (BCRF): http://www.bcrfcure.org/
Breast Cancer Risk Assessment Tool (NIH, NCI): http://www.cancer.gov/cancerinformation/doc/
CancerLinks: Breast Cancer: http://www.cancerlinks.org/breastcanlinks.html
Cancer Supportive Care: Lymphedema Issues Module: http://www.cancersupportivecare.com/lymphedema.html
Entre Mujeres (Spanish breast cancer information): http://www.cancerlinks.com/Mujeres/
Guide to Quality Breast Cancer Care: http://www.natlbcc.org/nbccf/
HealthTalk: Breast Cancer Education Network: http://www.healthtalk.com/bcen/
Inflammatory Breast Cancer: http://www.cancerlinks.com/IBC/
Inflammatory Breast Cancer Support: http://www.ibcsupport.org/
MayoClinic.com: Cancers: Breast Cancer: http://www.mayoclinic.com/
MayoClinic.com: Health Decision Guides: Early Stage Breast Cancer: http://www.MayoClinic.com/takecharge/healthdecisionguides/breastcancer/index.cfm
MedlinePlus: Breast Cancer: http://www.nlm.nih.gov/medlineplus/breastcancer.html
National Alliance of Breast Cancer Organizations (NABCO): http://www.nabco.org/
National Alliance of Breast Cancer Organizations (NABCO): Breast Cancer Resource List: Text Version: http://www.nabco.org/index.php/index.php/7; PDF downloadable from: http://www.nabco.org/index.php/40/
National Alliance of Breast Cancer Organizations (NABCO): Newly Diagnosed with Recurrent or Advanced Breast Cancer: http://www.nabco.org/
National Breast Cancer Coalition (NBCC): http://www.natlbcc.org/
National Cancer Institute (NCI): Breast Cancer Home Page: http://www.cancer.gov/cancerinformation/
NCI: CancerNet: What You Need to Know About Breast Cancer: http://www.cancer.gov/cancerinfo/wyntk/breast
NCI: Understanding Breast Changes: A Health Guide for All Women: http://www.pueblo.gsa.gov/cictext/health/breast-changes/breastchanges.htm
Newly Diagnosed with Breast Cancer: http://www.fightingspirit.org/newlydiagnosed/introduction.html
OncoLink: Breast Cancer: http://www.oncolink.com/
Patient Centers: Breast Cancer: http://www.patientcenters.com/breastcancer/
Susan G. Komen Breast Cancer Foundation: http://www.komen.org/
University of Michigan: PERC Pathway: Breast Cancer: http://www.cancer.med.umich.edu/learn/pwbreast.htm
Women's Information Network against Breast Cancer (WINABC): http://www.winabc.org/
Women's Information Network against Breast Cancer (WINABC): Decision-Making Checklist: http://winabc.org/newweb/breast-cancer-basics/decision-making-checklist.htm
Y-ME: http://www.y-me.org/; Spanish: http://www.y-me.org/espanol/
American Cancer Society (ACS): Ovarian Cancer: Detailed Guide: http://www.cancer.org/
American Cancer Society (ACS): Treatment Decision Tools: Ovary Cancer Resource Center: NexProfiler Tool for Cancer: https://www.cancer.nexcura.com/Secure/InterfaceSecure.asp?CB=271
Association of Cancer Online Resources (ACOR): Ovarian Problems Discussion List: http://listserv.acor.org/archives/ovarian.html
Eyes on the Prize (Gynecologic Cancers): http://www.eyesontheprize.org/
Gilda's Club: http://www.gildasclub.org/
Gynecologic Cancer Foundation (GCF): http://www.wcn.org/gcf/
International Ovarian Cancer Connection: Conversations (International Newsletter for Those Fighting Ovarian Cancer): http://www.ovarian-news.com/
Johns Hopkins Pathology: Understanding Ovarian Cancer: http://pathology2.jhu.edu/ovca/menuunderstanding.cfm
Johns Hopkins Pathology: Understanding Ovarian Cancer: Glossary: http://pathology2.jhu.edu/ovca/glossary.cfm
Johns Hopkins Pathology: Understanding Ovarian Cancer: Prevention Poster: http://pathology2.jhu.edu/ovca/OvarianCancer.pdf
Johns Hopkins Pathology: Understanding Ovarian Cancer: Signs and Symptoms: http://pathology2.jhu.edu/ovca/symptoms.cfm
Lynne Cohen Foundation for Ovarian Cancer Research: http://www.lynnecohenfoundation.org/
MedlinePlus: Ovarian Cancer: http://www.nlm.nih.gov/medlineplus/ovariancancer.html
National Women's Health Information Center: 4woman.gov: Hereditary Susceptibility to Breast and Ovarian Cancer: http://www.4woman.gov/napbc/napbc/hsedcurr.htm
National Women's Health Information Center: 4woman.gov: Ovarian Cancer FAQ: http://www.4woman.gov/faq/ovarian.htm
National Ovarian Cancer Association (Canada): http://www.ovariancanada.org/
National Ovarian Cancer Coalition: http://www.ovarian.org/
OncoLink: Types of Cancer: Gynecologic Cancers: Ovarian Cancer: http://www.oncolink.com/types/section.cfm?c=6&s=19
Ovarian Cancer Control Initiative: http://www.cdc.gov/cancer/ovarian/
Ovarian Cancer National Alliance: http://www.ovariancancer.org/
OvCa.Net, Ovarian Cancer Network: http://www.ovca.net/
Research for Ovarian Cancer and Continued Survival: http://www.roccs.org/
Share: Self-Help for Women with Breast or Ovarian Cancer: http://www.sharecancersupport.org/
Endometrial Cancer for Laymen and Students (Mario Kopljar, MD): http://www.cancerlinks.com/Endometrial/
Eyes on the Prize (Gynecologic Cancers): http://www.eyesontheprize.org/
Gynecologic Cancer Foundation (GCF): http://www.wcn.org/gcf/
MedlinePlus: Cervical Cancer: http://www.nlm.nih.gov/medlineplus/cervicalcancer.html
MedlinePlus: Uterine Cancer: http://www.nlm.nih.gov/medlineplus/uterinecancer.html
MedlinePlus: Vaginal Cancer: http://www.nlm.nih.gov/medlineplus/vaginalcancer.html
MedlinePlus: Vulvar Cancer: http://www.nlm.nih.gov/medlineplus/vulvarcancer.html
Merck Manual: Gynecologic Neoplasms: Endometrial Cancer: http://www.merck.com/pubs/mmanual/section18/chapter241/241a.htm
National Breast and Cervical Cancer Early Detection Program: http://www.cdc.gov/cancer/nbccedp/
Women's Cancer Network: Risk Survey: http://www.wcn.org/risk/
American Cancer Society (ACS): All about Anal Cancer: http://www.cancer.org/
American Cancer Society (ACS): All about Colon and Rectum Cancer: http://www.cancer.org/
Arizona Cancer Center: Colon Cancer: http://www.azcc.arizona.edu/prevent/ColonPrevent.htm
Colorectal Cancer Network: http://www.colorectal-cancer.net/
Colorectal Cancer Prevention and Control Initiatives: http://www.cdc.gov/cancer/colorctl/
Diet, Colorectal Adenomas, and Colorectal Cancer: http://www.ag.uiuc.edu/~ffh/abstracts/polypeditorial.html
MedlinePlus: Carcinoid Tumors (Intestinal): http://www.nlm.nih.gov/medlineplus/carcinoidtumors.html
MedlinePlus: Colorectal Cancer: http://www.nlm.nih.gov/medlineplus/colorectalcancer.html
National Cancer Institute (NCI): Anal Cancer Home Page: http://www.cancer.gov/cancerinformation/cancertype/anal/
National Cancer Institute (NCI): Colon and Rectal Cancer Home Page: http://www.cancer.gov/cancerinformation/cancertype/colonandrectal/
OncoLink: Colorectal Cancer: http://www.oncolink.com/
Screen for Life: National Colorectal Cancer Action Campaign: http://www.cdc.gov/cancer/screenforlife/
American Cancer Society (ACS): All about Esophagus Cancer: http://www.cancer.org/
MedlinePlus: Esophageal Cancer: http://www.nlm.nih.gov/medlineplus/esophagealcancer.html
National Cancer Institute (NCI): Esophageal Cancer Home Page: http://www.cancer.gov/cancerinformation/cancertype/esophageal/
OncoLink: Esophageal Cancer: http://www.oncolink.com/
National Cancer Institute (NCI): Gallbladder Cancer Home Page: http://www.cancer.gov/cancerinformation/cancertype/gallbladder/
OncoLink: Gallbladder Cancer: http://www.oncolink.com/
American Cancer Society (ACS): All about Liver Cancer: http://www.cancer.org/
National Cancer Institute (NCI): CancerNet: Liver Cancer Home Page: http://www.cancer.gov/cancerinformation/cancertype/liver/
OncoLink: Liver Cancer (Hepatoma): http://www.oncolink.com/types
OncoLink: Pediatric Cancers: Liver Cancer: http://www.oncolink.com/
American Cancer Society (ACS): All about Pancreas Cancer: http://www.cancer.org/
National Cancer Institute (NCI): Islet Cell Carcinoma (Endocrine Pancreas) (PDQ(r)) Treatment: http://www.cancer.gov/
National Cancer Institute (NCI): Pancreatic Cancer (PDQ(r)) Treatment: http://www.cancer.gov/
National Cancer Institute (NCI): What You Need to Know about Cancer of the Pancreas: http://www.cancer.gov/
OncoLink: Pancreatic Cancer: http://www.oncolink.com/
American Cancer Society (ACS): All about Stomach Cancer: http://www.cancer.org/
MedlinePlus: Stomach Cancer: http://www.nlm.nih.gov/medlineplus/stomachcancer.html
National Cancer Institute (NCI): Stomach Cancer Home Page: http://www.cancer.gov/cancerinformation/cancertype/stomach/
National Cancer Institute (NCI): Gastric Cancer (PDQ(r)) Treatment: http://www.cancer.gov/cancerinfo/pdq/treatment/gastric/Patient
National Cancer Institute (NCI): What You Need to Know about Stomach Cancer: http://www.cancer.gov/cancerinfo/wyntk/stomach
OncoLink: Gastric Cancer: http://www.oncolink.com/
MedlinePlus: Head and Neck Cancer: http://www.nlm.nih.gov/medlineplus/headandneckcancer.html
American Brain Tumor Association: http://neurosurgery.mgh.harvard.edu/abta/
American Cancer Society (ACS): All about Brain/CNS Tumors in Adults: http://www.cancer.org/
American Cancer Society (ACS): All About Brain/CNS Tumors in Children: http://www.cancer.org/
MedlinePlus: Brain Cancer: http://www.nlm.nih.gov/medlineplus/braincancer.html
National Cancer Institute (NCI): Brain Tumor Home Page: http://www.cancer.gov/cancerinformation/cancertype/braintumor/
National Cancer Institute (NCI): What You Need to Know about Brain Tumors: http://www.cancer.gov/
OncoLink: Brain Tumors: http://www.oncolink.com/
OncoLink: Pediatric Cancers: Brain Tumors: http://www.oncolink.com/
American Dental Association: Public: Oral Health Topics: Oral Cancer: http://www.ada.org/public/topics/cancer/cancer.html
Interventions for Preventing Oral Mucositis or Oral Candidiasis for Patients with Cancer Receiving Chemotherapy (Excluding Head and Neck Cancer): http://www.cochrane.org/cochrane/revabstr/ab000978.htm
MedlinePlus: Oral Cancer: http://www.nlm.nih.gov/medlineplus/oralcancer.html
National Cancer Institute (NCI): What You Need to Know about Oral Cancer: http://www.cancer.gov/cancerinfo/wyntk/oral
National Institute of Dental and Craniofacial Research (NIDCR): National Oral Health Information Clearinghouse (NOHIC): Oral Health, Cancer Care and You: http://www.nohic.nidcr.nih.gov/campaign/
National Institute of Dental and Craniofacial Research (NIDCR): National Oral Health Information Clearinghouse (NOHIC): Detecting Oral Cancer: http://www.nohic.nidcr.nih.gov/pubs/detect/
Oral Cancer Consortium: http://www.oral-cancer.org/; Spanish: http://www.oral-cancer.org/espanol/
Oral Cancer Foundation: http://www.oralcancer.org/ [NOTE: Requires Flash plug-in.]
Support for People with Oral and Head and Neck Cancer (SPOHNC): http://www.spohnc.org/
Yul Brynner Head and Neck Cancer Foundation: http://www.headandneck.org/
Alliance for Lung Cancer: http://www.alcase.org/
American Lung Association: Facts about Lung Cancer: http://www.lungusa.org/diseases/lungcanc.html
American Lung Association: Lung Cancer Treatment Decision Tools: http://www.lungusa.org/diseases/indexprofiler.html
Lung Cancer Online: http://www.lungcanceronline.org/
MedlinePlus: Lung Cancer: http://www.nlm.nih.gov/medlineplus/lungcancer.html
National Cancer Institute (NCI): What You Need to Know about Lung Cancer: http://www.cancer.gov/
Oncology Nursing Society: LungCancer.org: http://www.lungcancer.org/
American Cancer Society (ACS): Man to Man: http://www.cancer.org/docroot/ESN/content/ESN31XMantoMan36.asp?sitearea=SHR
Important Site
American Cancer Society (ACS): All about Penile Cancer: http://www.cancer.org/
National Cancer Institute (NCI): Penile Cancer Home Page: http://www.cancer.gov/cancerinformation/cancertype/penile/
Urology Channel: Urethral and Penile Cancer: http://www.urologychannel.com/urethralpenilecancer/index.shtml
American Cancer Society (ACS): What Is Testicular Cancer?: http://www.cancer.org/
MedlinePlus: Testicular Cancer: http://www.nlm.nih.gov/medlineplus/testicularcancer.html
National Cancer Institute (NCI): Testicular Cancer Home Page: http://www.cancer.gov/cancerinformation/cancertype/testicular/
OncoLink: Testicular Cancer: http://www.oncolink.com/
Testicular Cancer Resource Center: http://www.acor.org/TCRC/
Canadian Prostate Cancer Network (CPCN): http://www.cpcn.org/
Centers for Disease Control and Prevention (CDC): National Center for Chronic Disease Prevention and Health Promotion: Prostate Cancer Control Initiatives: Screening for Prostate Cancer: Sharing the Decision: http://www.cdc.gov/cancer/prostate/
HONselect-Genital Neoplasms, Male: http://www.hon.ch/HONselect/Selection/C12.294.260.html
Lions Australian Prostate Cancer Web Site: http://www.prostatehealth.org.au/
MedlinePlus: Prostate Cancer: http://www.nlm.nih.gov/medlineplus/prostatecancer.html
National Cancer Institute (NCI): Cancer.gov: What You Need to Know: Prostate Cancer: http://www.cancer/cancerinfo/wyntk/prostate/
National Prostate Cancer Coalition: Education: http://www.pcacoalition.org/education/
New York Online Access to Health (NOAH): Ask Noah About: Prostate Cancer: http://www.noah-health.org/english/illness/cancer/prostatecancer.html
Phoenix5 Main Menu: Men Fighting Prostate Cancer: http://www.phoenix5.org/menumain.html
Prostate Cancer Alliance of Canada (PCAC): http://www.prostatealliance.org/
Prostate Cancer Charity (UK): http://prostate-cancer.org.uk/
Prostate Cancer Research Foundation of Australia: http://www.prostate.org.au/
University of Michigan (UM), Comprehensive Cancer Canter (CCC): Prostate Cancer: http://www.cancer.med.umich.edu/prostcan.html
Us Too! Prostate Cancer Education and Support: http://www.ustoo.com/
Important Site
Association of Cancer Online Resources (ACOR): Pediatric Oncology Resources Center: http://www.acor.org/diseases/ped-onc/
Band-Aids and Blackboards: Chronic Illness, Children, and Health Education: http://www.faculty.fairfield.edu/fleitas/contents.html
CancerKids: http://www.cancerkids.com/
Candlelighters Childhood Cancer Foundation (CCCF): http://www.candlelighters.org/
Captain Chemo: Cancer Guide for Adolescence: http://www.royalmarsden.org/captchemo/cancerguide.asp
Cast of Cancer Characters: http://www.nursing.uiowa.edu/sites/PedsPain/CancerCh/
Chemo-Angels: http://www.chemoangels.com/
Foundation for Children's Oncology Group (FCOG); Formerly: National Childhood Cancer Foundation (NCCF): http://www.nccf.org/
Kids Cancer Network: http://www.kidscancernetwork.org/
KIDSAID (GriefNet): http://kidsaid.com/
Making Cancer Less Painful: A Handbook for Parents: http://is.dal.ca/~pedpain/mclp/mclp.html
National Cancer Institute (NCI): Cancer.gov: Childhood Cancers: http://www.cancer.gov/cancerinfo/types/childhoodcancers/
National Children's Cancer Society: http://www.children-cancer.com/
The Never-Ending Squirrel Tale: http://www.squirreltales.com/
Newton's Apple: Cancer Treatments: http://www.tpt.org/newtons/9/cncrtrts.html
Parenting Resources: Health and Safety: Special Circumstances: Death: http://www.parentingresources.ncjrs.org/health/death.html
Pediatric Palliative Care: http://www.seattlechildrens.org/pedpalcare/
Young People with Cancer: A Guide for Parents: http://www.cancer.gov/cancerinformation/youngpeople/
FDA Consumer Magazine: Living with Leukemia (March 2002): http://www.fda.gov/fdac/features/2002/202leuk.html
HealthTalk: Chronic Lymphocytic Leukemia Education Network: http://www.healthtalk.com/cllen/
MedlinePlus: Leukemia, Adult Acute: http://www.nlm.nih.gov/medlineplus/leukemiaadultacute.html
MedlinePlus: Leukemia, Adult Chronic: http://www.nlm.nih.gov/medlineplus/leukemiaadultchronic.html
MedlinePlus: Leukemia, Childhood: http://www.nlm.nih.gov/medlineplus/leukemiachildhood.html
Merck Manual: Chapter 138: Leukemias: http://www.merck.com/pubs/mmanual/section11/chapter138/138a.htm
Association of Cancer Online Resources (ACOR): Pediatric Oncology Resource Center: Lymphomas: http://www.acor.org/diseases/ped-onc/diseases/lymph.html
HealthTalk: Lymphoma Education Network: http://www.healthtalk.com/len/
MedlinePlus: Hodgkin's Disease: http://www.nlm.nih.gov/medlineplus/hodgkinsdisease.html
MedlinePlus: Lymphoma (also Non-Hodgkin's Lymphoma): http://www.nlm.nih.gov/medlineplus/lymphoma.html
Merck Manual of Diagnosis and Treatment: Lymphomas: http://www.merck.com/pubs/mmanual/section11/chapter139/139a.htm
Patient Centers: Lymphoma: http://www.patientcenters.com/lymphoma/
Royal Marsden Hospital: Patient Information: Lymphomas: http://www.royalmarsden.org/patientinfo/booklets/lymphomas/index.asp
Choose Your Cover: http://www.cdc.gov/ChooseYourCover/
MedlinePlus: Melanoma: http://www.nlm.nih.gov/medlineplus/melanoma.html
MedlinePlus: Skin Cancer: http://www.nlm.nih.gov/medlineplus/skincancer.html
Melanoma Patients' Information Page (MPIP): http://www.mpip.org/
Melanoma Patients' Information Page (MPIP): Staging Calculator: http://www.mpip.org/frameset.shtml?tools/stager/stage.html
National Skin Cancer Prevention Education Program: http://www.cdc.gov/cancer/nscpep/
Skin Cancer Foundation: http://www.skincancer.org/
Recommended Search Terms
[See other examples throughout this chapter, replacing the name of the cancer or body part as appropriate.]
Important Site
HealthTalk: Multiple Myeloma Education Network: http://www.healthtalk.com/mmen/
M. D. Anderson Cancer Center: Complementary/Integrative Medicine Education Resources (CIMER): http://www.mdanderson.org/departments/cimer/; Spanish: http://www.mdanderson.org/SP/departments/cimer/index.cfm
National Insittue of Diabetes and Digestive and Kidney Diseases (NIDDK): National Digestive Diseases Information Clearinghouse (NDDIC): Liver Biopsy: http://digestive.niddk.nih.gov/ddiseases/pubs/liverbiopsy/index.htm
Recommended Search Terms
American College of Physicians (ACP-ASIM): Home Care Guide for Advanced Cancer: http://www.acponline.org/public/hcare/
Recommended Search Terms
CancerCare: Drug Assistance Programs: http://www.cancercare.org/HelpingHandsGuide/HelpingHandsGuideList.cfm
American Cancer Society (ACS): Managing Side Effects of Chemotherapy: http://www.cancer.org/
Cancer.gov: Clinical Trials: http://www.nci.nih.gov/clinicaltrials/
Cancer Fatigue: http://www.cancersymptoms.org/symptoms/fatigue/
American Institute for Cancer Research (AICR): Cancer Resource Manual (For Newly Diagnosed Cancer Patients): http://www.aicr.org/resource.html, or call 1-800-843-8114, ext. 80
American Cancer Society (ACS): Nutrition for Cancer Patients: http://www.cancer.org/
Recommended Search Terms
Agency for Healthcare Research and Quality (AHRQ): Management of Cancer Pain (Clinical Practice Guideline): http://text.nlm.nih.gov/ftrs/dbaccess/capp/ or: http://www.talaria.org/guidelineF.html
Post Breast Surgery Pain Syndrome: http://www.cancersupportivecare.com/neuropathic.html
Arizona Cancer Center: http://www.azcc.arizona.edu/prevent/pvalltips2.htm
Important Site
CancerCare: Finding Financial Assistance: http://www.cancercare.org/CancerCareServices/
Recommended Search Terms
Bloch Cancer Foundation: http://www.blochcancer.org/, or call 1-800-433-0464
Recommended Search Terms
American Society of Clinical Oncology (ASCO): Symptom Management: Sexual Function: http://www.asco.org/
Cancercare: Managing Your Cancer: Men's Cancer and Sexuality: http://www.cancercare.org/MensCancerandSexuality/MensCancerandSexualitymain.cfm
Breast Cancer Information Service: Breast Cancer and Sexuality: http://www.bcis.org/GeneralInfo/psysex.html
Important Site
Cancercare: Online Gay & Lesbian Partner Support Group: http://www.cancercare.org/Feedback/Feedback.cfm
Cancer Free: http://www.cancer-free.com/
American Cancer Society (ACS): Talking about Cancer: http://www.cancer.org/
Recommended Search Terms
American Cancer Society (ACS): Talking with Children about Cancer: http://www.cancer.org/
American Cancer Society (ACS): Communicating with Friends and Relatives about Your Cancer: http://www.cancer.org/
American Cancer Society (ACS): Handling Disclosure with Insurers and Financial Institutions: http://www.cancer.org/
Recommended Search Terms
Antineoplastic Agents Generic Abbreviations: http://www.meds.com/DoseCalc/regagents.html
[Use the name of the cancer given to you by your doctor].
[Consider combining the name of the cancer with the part of the body or with the general cancer words and phrase in "Terminology," in this chapter.]
International Myeloma Foundation: http://www.myeloma.org/
MedlinePlus: Pancreatic Cancer (Islet Cell Carcinoma): http://www.nlm.nih.gov/medlineplus/pancreaticcancer.html
MedlinePlus: Soft Tissue Sarcoma: http://www.nlm.nih.gov/medlineplus/softtissuesarcoma.html
University of Michigan: PERC Pathways: http://www.cancer.med.umich.edu/learn/percpathways.htm
Cancer Issues
45. Alternative, Complementary and Integrative Therapeutic Choices
[See also "Alternative/Complementary Health Sources," v. 3: Health and Wellness, Part V.]
Recommended Search Terms
Important Site
Memorial Sloan Kettering Cancer Center: What Is the Difference between Integrative, Complementary, and Alternative Medicine?: http://www.mskcc.org/mskcc/html/1985.cfm
National Cancer Institute (NCI): Office of Cancer Complementary and Alternative Medicine: http://www3.cancer.gov/occam/
46. Biopsy and Staging
Recommended Search Terms
Important Site
Staging and Grading of Bladder Cancer: http://www.associatedurologists.com/bladder.html
Virtual Hospital: The Role of CT in Evaluating Lung Cancer and Staging (Brian F. Mullan): http://www.vh.org/Providers/Textbooks/LungTumors/Diagnosis/Radiology/Text/CTImaging.html
Women's Information Network against Cancer (WINABC): After the Biopsy: http://winabc.org/newweb/breast-cancer-basics/after-the-biopsy.htm
Women's Information Network against Cancer (WINABC): Breast Biopsy: http://winabc.org/newweb/breast-health/breast-biopsy.htm
Women's Information Network against Cancer (WINABC): Diagnostic Biopsy: http://winabc.org/newweb/breast-health/the-diagnostic-biopsy.htm
Women's Information Network against Cancer (WINABC): Staging of Cancer: http://winabc.org/newweb/breast-cancer-basics/staging-of-breast-cancer.htm
Women's Information Network against Cancer (WINABC): Understanding Your Pathology Report: http://winabc.org/newweb/breast-cancer-basics/understanding-your-pathology-report.htm
47. Caregiving and Home Care
[See also "Tools and Support," v. 1: Chapter 12.]
Important Site
Cancer Supportive Care Program for Education and Support: http://www.cancersupportivecare.com/
ChestNet: Links-End of Life Issues: http://www.chestnet.org/about/links/endoflife/
National Cancer Institute (NCI): CancerNet: Coping with Cancer: End-of-Life Issues: http://www.cancer.gov/cancerinformation/coping/
OncoLink: Coping with Cancer: Caregivers: http://www.oncolink.com/
48. Chemotherapy, Cancer Medications, Side Effects
[See also "Tools and Support," v.1: Chapter 12; "General Cancer and Cancer Treatment Terminology," in this chapter; "Answering Frequently Asked Questions: Treatments: Prescriptions and Drug Information," v.1: Chapter 10.]
Important Site
Chemotherapies: http://www.chemotherapies.net/
MedlinePlus: Cancer Chemotherapy: http://www.nlm.nih.gov/medlineplus/cancerchemotherapy.html
You Are Not Alone (YANA): http://www.yana.org/
YANA: Brand and Common Names of Medications Frequently Used in Oncology: http://www.yana.org/medequiv.htm
Side Effects
Recommended Search Terms
Important Site
American Cancer Society (ACS): When You Have Chemotherapy: http://www.cancer.org/
Cancer Supportive Care: Gastrointestinal Issues: http://www.cancersupportivecare.com/gastrointestinal.html
Cancer Supportive Care: Osteoporosis-Prevention, Diagnosis and Therapy: http://www.cancersupportivecare.com/osteoporosis.html
Cancerpage.com: Managing Side Effects: http://www.cancerpage.com/centers/Sideeffects/index.asp
Cochrane Library: Interventions for Preventing Oral Mucositis or Oral Candidiasis for Patients with Cancer: http://www.cochrane.org/cochrane/revabstr/ab000978.htm
National Institute of Dental and Craniofacial Research: NOHIC: Oral Health, Cancer Care, and You: http://www.nohic.nidcr.nih.gov/campaign/titlepg.htm
49. Clinical Trials
[See also "Tools and Support: Finding Clinical Trials," v.1: Chapter 12.]
Recommended Search Terms
Important Site
Cancer411.org: Comprehensive Cancer Clinical Trials: http://www.cancer411.org/index.asp
Cancerpage: Clinical Trial Match: http://www.cancerpage.com/clinmatch/
Cancerpage: Is Clinical Trial Right For Me?: http://www.cancerpage.com/clinmatch/decide.asp
CancerTrialsHelp.org: http://www.cancertrialshelp.org/
EmergingMed.com: http://emergingmed.com/
OncoLink: Clinical Trials Matching Service: http://www.oncolink.com/treatment/matching.cfm
50. Fatigue
Recommended Search Terms
Important Site
Cancer Fatigue and Procrit: Clinical Trial: http://www.cccoutreach.org/oscr/procrit.htm
Cancer Supportive Care: Anemia Issues: http://www.cancersupportivecare.com/anemia.html
Cancer Supportive Care: Fatigue: http://www.cancersupportivecare.com/fatigue.html
CancerLib: Cancer Fatigue: http://www.selu.com/cancerlib/newsletterspring2001fatigue.html
CancerNet: Coping with Fatigue: http://www.cancernet.co.uk/fatigue.htm
Chronic Myelogenous Leukemia (CML): CMLSupport: News: Fatigue in Cancer: http://www.cmlsupport.com/cmlnewsfatigue.htm
Cancer BACUP: Coping with Fatigue: What Causes fatigue?: http://www.cancerbacup.org.uk/Resourcessupport/Controllingsymptoms/Fatigue/Causes
National Cancer Fatigue Awareness Guide: http://www.ons.org/
Procrit: http://www.procrit.com/
Symptom Management in Cancer: Pain, Depression and Fatigue: http://consensus.nih.gov/news/upcoming/cancer/cancerinfo.htm
51. Newly Diagnosed
Recommended Search Terms
Important Site
Bloch Cancer Foundation: Letter to All Newly Diagnosed Cancer Patients: http://www.blochcancer.org/articles/letter.html
Bloch Cancer Foundation: 12 Questions for a Newly Diagnosed Cancer Patient to Ask Their Physician: http://www.blochcancer.org/articles/12QUESTIONS.html
A Notebook Guide for Newly Diagnosed Cancer Patients: http://www.newcancerpatient.net/
Shared Experience Cancer Support Knowledgebase: http://www.sharedexperience.org/
Steve Dunn's Cancer Guide: http://cancerguide.org/
What You Need to Know about Cancer: http://www.thecancer.info/cancer/wynk.asp
52. Nutrition
Recommended Search Terms
Important Site
American Cancer Society (ACS): Nutrition for Survivors: http://www.cancer.org/
American Institute for Cancer Research (AICR): http://www.aicr.org/
American Institute for Cancer Research (AICR): Recipe Corner: http://www.aicr.org/recipe.html
Arizona Cancer Center (ACC): Cancer Nutrition: http://www.azcc.arizona.edu/nutrition/
University of Michigan: Comprehensive Cancer Center (CCC): Nutrition Services: Nutrition Tips: http://www.cancer.med.umich.edu/learn/nutrtips.htm
53. Pain
[See also "Pain & Pain Management," v. 3: Health and Wellness, Part X; " Living with a Chronic Illness: Pain Management," v.3: Health and Wellness, Part VIII, #106.]
American Alliance of Cancer Pain Initiatives (AACPI): http://www.aacpi.org/; State Contacts: http://www.aacpi.org/stcont.html
State Cancer Pain Initiatives on the Web: http://www.aacpi.org/initweb.html
American Pain Foundation: http://www.painfoundation.org/
Association of Cancer Online Resources (ACOR): http://www.acor.org/
Cancer Pain: http://www.cancer-pain.org/
Cancer Pain Release (World Health Organization): http://www.whocancerpain.wisc.edu/
CancerCare: Managing Your Cancer: Pain: http://www.cancercare.org/Pain/Painmain.cfm
Cancerpage.com: Pain Center: http://www.cancerpage.com/centers/Pain/
Cancerpage.com: Pain Drugs: http://www.cancerpage.com/centers/Drug/paindrugs.asp
City of Hope Pain/Palliative Care Resource Center (COHPPRC): http://www.cityofhope.org/prc/
Cure Today: It Doesn't Have to Hurt: http://www.curetoday.com/pastissues/v1n1/Fhurt/hurt.html
Eight Facts Everyone Should Know about Cancer Pain: http://www.wisc.edu/wcpi/publiced/publiced.htm
Making Cancer Less Painful: A Handbook for Parents: http://is.dal.ca/~pedpain/mclp/mclp.html
Mayday Pain Project: Cancer: http://www.painandhealth.org/cancer-links.html
New Hampshire Cancer Pain Initiative: Consumer Information: Freedom from Cancer Pain: http://www.nhho.org/nhcpi/consumer.html
Talaria: A Hypermedia Assistant for Cancer Pain Management (American Pain Society): http://www.talaria.org/
Post-Mastectomy Pain
Important Site
Post Breast Surgery Pain Syndrome Information Handout: http://www.cancersupportivecare.com/pbtpsinfo.html
Post Breast Therapy Pain Syndrome Issues: http://www.cancersupportivecare.com/syndrome.html
54. Prevention
Recommended Search Terms
Important Site
Cancer Detection Center (CDC): http://cancerdetection.org/
Cancer Detection and Prevention Online: http://www.cancerprev.org/
Cancer Research Foundation of America (CRFA): http://www.crfa.org/
Centers for Disease Control and Prevention (CDC): Cancer Prevention and Control: http://www.cdc.gov/cancer/
Harvard Center for Cancer Prevention. Your Cancer Risk: http://www.yourcancerrisk.harvard.edu/
National Comprehensive Cancer Control Program: http://www.cdc.gov/cancer/ncccp/
Strang Cancer Prevention Center: http://www.strang.org/
55. Resources and Lifestyle
[See also Tools and Support," v.1: Chapter 12.]
Cancerpage.com: Medical Illustrations Center: http://www.cancerpage.com/centers/Illustrations/index.asp
Cosmetic Help for Cancer Patients: http://www.cfsan.fda.gov/~dms/cos-cncr.html
Gilda's Club: http://www.gildasclub.org/; Spanish: http://www.gildasclub.org/sp/
56. Second Opinions
[See also " Tools and Support: Where to Ask Questions," v.1: Chapter 12, pp. 147-150.]
CancerGuide: Second Opinions: http://www.cancerguide.org/secondopinion.html
Cancer Supportive Care: Second Opinion: http://www.cancersupportivecare.com/secondopinions.html
Second Opinions for Cancer Patients: http://www.cancerlynx.com/secondopinions.html
57. Sexuality
[See also "Sexual Health Issues," v.3: Life Stages, Part XI.]
Cancer BACUP: Sexuality and Cancer: http://www.cancerbacup.org.uk/info/sexuality.htm
Cancer BACUP: Sexuality and Cancer: Some Common Questions: http://www.cancerbacup.org.uk/info/sex/sex-9.htm
CancerHelp UK: Sex and Sexuality: http://www.cancerhelp.org.uk/help/
CancerHelp UK: Sex and Sexuality: Sex and Cancer for Partners: http://www.cancerhelp.org.uk/help/
CancerLynx: Sexuality and Cancer: http://www.cancerlynx.com/sexuality.html
Cancer Supportive Care: The Sexuality, Intimacy and Communications Program: http://www.cancersupportivecare.com/sexuality.html
OncoLink: Coping with Cancer: Sexuality: http://www.oncolink.com/coping/coping/
Sexuality: Men
Recommended Search Terms
Important Site
CancerHelp UK: Sex and Cancer for Men: http://www.cancerhelp.org.uk/
Sexuality and Intimacy: http://www.phoenix5.org/sexaids.html
Sexuality: Women
Recommended Search Terms
Important Site
Cancercare: Managing Your Cancer: Breast Cancer and Sexuality: http://www.cancercare.org/BreastCancerandSexuality/BreastCancerandSexualitymain.cfm
CancerHelp UK: Sex and Cancer for Women: http://www.cancerhelp.org.uk/
Sexuality: Lesbian, Gay, Bisexual, Transgendered (LGBT)
Recommended Search Terms
[NOTE: Searching the word "lesbian" or the acronym LGBT is more effective for retrieving health information without pornography than using the words "gay" or "homosexual."]
[NOTE: Another option for avoiding pornography in your search results is to include the word pornography or porn prefaced immediately with a minus sign, as demonstrated above.]
GayHealth: Cancer: http://www.gayhealth.com/
King County Public Health: GLBT Health: Anal Cancer: http://www.metrokc.gov/health/glbt/analcancer.htm
King County Public Health: GLBT Health: Breast Cancer: http://www.metrokc.gov/health/glbt/bcancer.htm
King County Public Health: GLBT Health: Cervical Cancer: http://www.metrokc.gov/health/glbt/cervicalcancer.htm
Lesbian Community Cancer Project: http://www.lccp.org/
Mautner Project for Lesbians with Cancer: http://www.mautnerproject.org/
58. Survival
Recommended Search Terms
Important Site
Facing Forward: A Guide for Cancer Survivors: http://www.cancer.gov/
National Coalition for Cancer Survivorship (NCCS): http://www.canceradvocacy.org/
National Coalition for Cancer Survivorship (NCCS): Cancer Survival Toolbox: http://www.cancersurvivaltoolbox.org/
National Cancer Survivors Day (Northern California): http://www.survivorsday.com/ or: http://www.ncsdf.org/
59. Talking about Cancer
Recommended Search Terms
Important Site
Talking about Cancer: Children
[See also "Childhood Cancer," in this chapter.]
Important Site
Medical College of Wisconsin: Talking with Your Child about Cancer: http://healthlink.mcw.edu/article/926241013.html
University of Michigan, Patient Education Resource Center (PERC): Talking with Children about Cancer: http://www.cancer.med.umich.edu/learn/pwtalking.htm
Talking about Cancer: Friends and Family
Recommended Search Terms
Important Site
CancerHelp UK: http://www.cancerhelp.org.uk/
Talking about Cancer: At Work and Business
Recommended Search Terms
Important Site
American Cancer Society (ACS): How to Find a Financial Professional Sensitive to Cancer Issues: http://www.cancer.org/
American Cancer Society (ACS): Talking with Your Employer: http://www.cancer.org/
60. General Cancer and Cancer Treatment Terminology
Other Terms: "carcinoma," "malignancy," "neoplasm," "tumor," "tumour"
Association of Cancer Online Resources (ACOR): Cancer Glossary: http://www.acor.org/glossary/
Cancer.gov: Dictionary: http://www.cancer.gov/dictionary/
Cancerpage.com: Common Abbreviations Used in Combination Chemotherapies: http://www.cancerpage.com/centers/Drug/combination.asp
Cancerpage.com: Drug Center: http://www.cancerpage.com/centers/Drug/index.asp [NOTE: Includes terms and abbreviations for drugs in the following categories: anemia; anti-fungal; anti-microbial; anti-nausea (antiemetics); appetite stimulant; chemotherapy agents; anti-diarrheal; hormonal therapy; immunotherapy; organ protectant (cyto-protectants).]
CancersourceRN.com: Reference Center: Glossary: http://www.cancersourcern.com/resources/glossary/
Medical Dictionary (Searchable): http://www.mpip.org/frameset.shtml?tools/dict/dictindex.html
National Breast Cancer Coalition (NBCC): Glossary: http://www.natlbcc.org/nbccf/common/glossary.html
CancerWeb: Online Medical Dictionary: http://cancerWeb.ncl.ac.uk/omd/
Women's Information Network Against Breast Cancer (WINABC): Glossary of Terms: http://winabc.org/newweb/breast-cancer-basics/glossary-of-terms.htm
You Are Not Alone (YANA): Abbreviations Frequently Used While Discussing Cancer: http://www.yana.org/abbrevs.htm
Resources
Hotlines
American Institute for Cancer Research (AICR). Nutrition Hotline: 1-800-843-8114, ext. 80
AMC. Cancer Information and Counseling Line (CICL): http://www.amc.org/html/info/hinfocicl.html or 1-800-525-3777
Bloch Foundation. Cancer Hot Line: 1-800-433-0464 (Second opinions)
Cancer Detection Center (Los Angeles, CA): (213) 481-2511, ext. 100 or 1-800-92-CANCER.
Cancer.gov. LiveHelp (online instant messaging service, M-F, 9AM-7:30PM): http://cis.nci.nih.gov/
CancerPage. Ask Our RN: http://www.cancerpage.com/ask/
Gilda's Club: http://www.gildasclub.org/gconline/ or 1-888-GILDA-4-U or info@gildasclub.org
Memorial Sloan Kettering Cancer Center. Cancer Information Service: http://www.mskcc.org/mskcc/html/76.cfm or 1-800-4-CANCER
National Alliance of Breast Cancer Organizations (NABCO): 1-888-80-NABCO
National Cancer Institute (NCI). Cancer Information Service: 1-800-4-CANCER/1-800-422-6237; 1-800-332-8615 (TTY)
National Cancer Institute (NCI). CancerFax: 1-800-624-2511/(301) 402-5874. Use a touch-tone telephone or fax machine with a telephone handset.
National Institute of Dental and Craniofacial Research (NIDCR): 1-877-216-1019 (Oral complications of cancer)
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK): 1-800-949-6704; (301) 846-1558 (Kidney cancer)
FAQs
Cancer-Online Information Sources FAQ: http://www.faqs.org/faqs/cancer-faq/
OncoLink: http://cancer.med.upenn.edu/faq/
Cancer-Pain.org: http://www.cancer-pain.org/faqs/faqs.html
Powerlines and Cancer FAQs: http://www.mcw.edu/gcrc/cop/powerlines-cancer-FAQ/toc.html
Static EM Fields and Cancer FAQs: http://www.mcw.edu/gcrc/cop/static-fields-cancer-FAQ/toc.html
Tamoxifen: http://cis.nci.nih.gov/fact/716.htm
Cancer Publications on the Internet
BMTInfoNet: The Blood and Marrow Transplant Newsletter: http://www.bmtinfonet.org/newsletters/
Cancer Medicine, 5th ed. (NCBI): http://www.ncbi.nlm.nih.gov/
CancerLynx.com: An Online Zine for Cancer Patients and Professionals: http://www.cancerlynx.com/
Coping with Cancer Magazine: http://www.copingmag.com/
Cure Today: http://www.curetoday.com/
National Cancer Institutes' Publications Locator: https://cissecure.nci.nih.gov/ncipubs/ or: http://www.cancer.gov/cancerinformation/
Medical Specialty
Hematology; Oncology; Oncology nursing; Pediatric Oncology; Surgical oncology
Professional Organizations
American Cancer Society: http://www.cancer.org/
American Society of Clinical Oncology: http://www.asco.org/
Association of Oncology Social Work: http://www.aosw.org/
Association of Pediatric Oncology Nurses: http://www.apon.org/
Oncology Nursing Society: http://www.ons.org/
Society of Surgical Oncology: http://www.surgonc.org/
Patient Support Organizations/Discussions Groups
Association of Cancer Online Resources: http://www.acor.org/
Association of Cancer Online Resources: Mailing Lists Center: http://listserv.acor.org/archives/
Cancer Free: http://www.cancer-free.com/
CancerLinks: http://www.cancerlinks.com/ or: http://www.cancerlynx.com/
Cancer Research Foundation of America (CRFA): http://www.crfa.org/
Food and Drug Administration (FDA): Cancer Liaison Program: Patient Information: http://www.fda.gov/oashi/cancer/cancer.html
National Foundation for Cancer Research (NFCR): http://www.nfcr.org/
Shared Experience Cancer Support: http://www.sharedexperience.org/
Best One-Stop Shops
American Cancer Society: http://www.cancer.org
Association of Cancer Online Resources: http://www.acor.org/
Cancercare: http://www.cancercare.org/; Spanish: http://www.cancercare.org/EnEspanol/EnEspanolmain.cfm
Cancer Index: Cancer Resources in Languages Other Than English: http://www.cancerindex.org/clinks13.htm
CancerInfoNet: http://www.cancerinfonet.org/; Spanish: http://www.cancerinfonet.org/spanish/index.htm
Fondation Quebecoise du Cancer (French): http://www.fqc.qc.ca/
MayoClinic.com: Cancer Center: http://www.MayoClinic.com/findinformation/conditioncenters/
MedlinePlus: Cancer (General): http://www.nlm.nih.gov/medlineplus/cancergeneral.html
Memorial Sloan Kettering Cancer Center: http://www.mskcc.org/
Merck Manual, Home Edition: Section 15: Cancers: http://www.merck.com/pubs/mmanualhome/sec15/162.htm
Merck Manual of Diagnosis and Therapy: Section 11: Hematology and Oncology: http://www.merck.com/pubs/mmanual/section11/sec11.htm
National Cancer Institute (NCI): Cancer.gov: http://www.cancer.gov/; Spanish: http://www.cancer.gov/espanol/
National Cancer Institute (NCI): Cancer Information Service: http://cis.nci.nih.gov/
National Cancer Institute (NCI): Cancer Information: http://www.cancer.gov/cancerinformation/; Spanish: http://www.cancer.gov/espanol/
OncoLink: http://www.oncolink.com/
OncoNurse: Patient-Centered Guides: http://www.onconurse.com/
Steve Dunn's Cancer Guide: http://cancerguide.org/mainmenu.html
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