The Medical Library Association Encyclopedic Guide to Searching and Finding Health Information on the Web

by P. F. Anderson & Nancy Allee

Publisher's URL: http://www.neal-schuman.com/db/3/293.html

Sample Chapters URL: http://www.umich.edu/~pfa/mlaguide/

PDF of this section (100K)

Book will be available January 2004.

VII. Selected Links for Specific Disorders & Health Concerns

10. Cancers

[See also "Prostate Cancer"; "Hospice and End-of-Life Care"; "Caregivers & Caregiving"] "She suddenly threw up her hands and turned away / behind sunshades, caught / between the biopsy and the prognosis, / a white run down the ankle of one dark stocking." Skipper, Louie. "Earthly Trust." The Fourth Watch of the Night. Davis, CA: Swan Scythe Press, (c) 2001, p. 24.

Index to this Section:

Special searching issues for this topic:

This is one of the largest sections in the book, in part because cancer is really several diseases which have been grouped together, sharing certain issues and themes, but also because the sheer quantity of information on the Internet on the subject of cancer (overall) and individual cancers is overwhelming. This enormous volume of information presents special searching challenges. These challenges are not necessarily different than with other diseases, but because of the quantity of information, require a more focused approach from the outset. So, to paraphrase the Inspector in Casa Blanca, let's round up the usual questions (all of which are dealt with in more detail elsewhere in this book):
  1. What to ask;
  2. Where to start;
  3. How to find the needle in the haystack that is the piece of information you need;
  4. How to tell if what you have found is the "good stuff."

What to ask.

Cancer is a disease that can strike anyone anywhere – any age, gender, special population or ethnic group, any part of the body – nothing and no one is entirely immune. It is not unusual for someone who has been perfectly healthy their entire life to be surprised to find themselves struggling with both the diagnosis and their lack of experience with the medical environment. There are guides for the newly diagnosed patient which examples of what questions to ask, what information you need from your physician or health care team, how to start the process of learning about your diagnosis and treatment options. Referring to one of these guides is an excellent idea. They are based on the experience of many patients and clinicians who have been through this already, and who have an idea what has worked best for most people. The quality of the information you find and the health decisions you make can be dependent on first asking the right questions. The old computer acronym GIGO (garbage in, garbage out) is definitely not something you want to have applied to your cancer treatment decisions!

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 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 lay person's terms and others with medical jargon. It is good to know both the medical terms and the lay person's terms used to describe the anatomical area in the body, the type of cancer and body tissue, the diagnosis, the treatment options, everything.

Where to start.

Since there is so much information, you really do want to begin by being very selective. Going to a general Internet search engine, such as Yahoo or Google, and typing in the words <breast cancer> (for example) will certainly find web sites, but they probably won't be the best or most reliable, and there may be pornography or other inappropriate material included in the search results. Altavista, Google, and Teoma all retrieved over 500,000 hits each for <breast cancer>, with Google over 1,500,000! InfoSeek did not say the total number of hits, but the first three screens were all sponsored hits, meaning paid advertising, often off topic, such as www.work-at-homejobs.com. Yahoo retrieved a more manageable number of hits (around 300-400), with no pornography, but upon closer examination the information was not high quality or from reputable sources, and did not include many of the most helpful sources on the topic.

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 NCI, ACOR, or Oncolink. For new patients, we recommend a three-step approach to begin. 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 general information as well as that 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, as well as sometimes other languages. At the same time (the third step), you'll want to connect with other patients with a similar diagnosis. With around a hundred patient support and discussion groups, the single best place for this online is the Association of Cancer Online Resources, ACOR.org. If there is not a discussion group for your diagnosis, someone will surely know of one or a related group that would be helpful to you.

How to find the needle in the haystack.

Once you've learned more, questions will come up that simply aren't covered in the standard resources you've been using. This is when you may want to come back to the search engines. First, think about your question and how you are phrasing it. If you are searching for information on <cancer>, you will probably find a different kind of information using the equivalent term <neoplasm>. If you are searching for information on relief of <cancer pain>, you may want to include the phrase <"palliative care">. This thought process and using different terms makes a huge difference to what you find. Pick out the most important concept or concepts for which you are seeking more information. Think about some different ways to say the same thing, explore dictionaries, or ask someone on your health care team for suggestions of other terms you could use. Remember, on the Internet, if the term or phrase you search isn't there, a different search engine won't make much of a difference, but different terms will.

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 <"antineoplastic agents" cancers chemotherapy "side effects" "quality of life">. Even with a very specific set of terms like this, in Google there are still over 100 hits, but this is much more manageable and relevant than the almost 8000 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 help to the patient. 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 given, phrases used quotation marks to group the words that should appear together.

How to tell if what you have found is the "good stuff."

Make sure you refer to the criteria in our section on evaluation. Work with people and sites you trust. Do not make assumptions. Don't assume, for example, that just because we thought a site was worth sharing when we looked at it, that it hasn't changed since then. Being listed here does not necessarily mean that the site is still good, or even still there. If you aren't sure, ask, or keep looking.

Topic Profile

Types of Resources Recommended

Because cancer information is well represented on the Internet, you want to be very selective in the resources you use. For any new question, try first going to one or several of the large overall cancer information sites listed in the One Stop Shops below. If you are unable to find the information need in these, try asking on one of the cancer electronic discussion lists or patient support groups.

Abbreviations Used in This Section

Procedures & Special Topics:

Most Reported Cancers:

Breast, Cervical & Other Reproductive Cancers (Women):
Other Terms: "Breast Cancer"; "Breast Neoplasm"; Cervical Cancer"; "Cervical Neoplasm"; "Endometrial Cancer"; Gynecologic Cancer"; "Mastectomy"
Breast, Cervical & Other Reproductive Cancers (Women): Breast Cancer:
[See also "Biopsy & Staging" in this section.]

Sample Searches For This Topic:

Sites You Might Find:

Breast, Cervical & Other Reproductive Cancers (Women): Ovarian Cancers:
Sample Searches For This Topic:

Sites You Might Find:

Breast, Cervical & Other Reproductive Cancers (Women): Other Cancers:
Sample Searches For This Topic:

Sites You Might Find:

Digestive Cancers:
Other Terms: "Gastrointestinal Cancer"

Sample Searches For This Topic:

Digestive Cancers: Colon, Intestinal and Rectal Cancer (Colorectal Cancer)
Sample Searches For This Topic:

Sites You Might Find:

Digestive Cancers: Esophageal Cancer
Sample Searches For This Topic:

Sites You Might Find:

Digestive Cancers: Gallbladder Cancer
Sample Searches For This Topic:

Sites You Might Find:

Digestive Cancers: Liver Cancer
Sample Searches For This Topic:

Sites You Might Find:

Digestive Cancers: Pancreatic Cancer
Sample Searches For This Topic:

Sites You Might Find:

Digestive Cancers: Stomach/Gastric Cancer
Sample Searches For This Topic:

Sites You Might Find:

Head and Neck Cancers:
Head and Neck Cancers: General
Sample Searches For This Topic:

Sites You Might Find:

Head and Neck Cancers: Brain & Spinal Cord Cancer
Sample Searches For This Topic:

Sites You Might Find:

Head and Neck Cancers: Oral Cancers
Sample Searches For This Topic:

Sites You Might Find:

Lung & Respiratory Cancer:
Sample Searches For This Topic:

Sites You Might Find:

Reproductive Cancers (Men):
[See also "Men¹s Health Issues" "Prostate Disorders"]
Reproductive Cancers (Men) – General:
Sample Searches For This Topic:

Sites You Might Find:

Penile Cancer
Sample Searches For This Topic:

Sites You Might Find:

Testicular Cancer
Sample Searches For This Topic:

Sites You Might Find:

Other Common Cancers

Childhood Cancer:
Sample Searches For This Topic:

Sites You Might Find:

Leukemias:
Sample Searches For This Topic:

Sites You Might Find:

Lymphomas:
Sample Searches For This Topic:

Sites You Might Find:

Skin Cancers & Melanomas:
Sample Searches For This Topic:

Sites You Might Find:

Other Cancers
[See also "Best One Stop Shops" (in this section).] Sample Searches For This Topic:

Sites You Might Find:

Cancer Issues

Alternative, Complementary & Integrative Therapeutic Choices
[See also "Alternative/Complementary Health Sources"] Sample Searches For This Topic:

Sites You Might Find:

Biopsy& Staging:
Sample Searches For This Topic:

Sites You Might Find:

Caregiving & Home Care:
[See also : "Caregiving, Caregivers, Patient Advocacy, Supportive Care"] Sample Searches For This Topic:

Sites You Might Find:

Chemotherapy, Cancer Medications, Side Effects:
[See also "Finding Help & Resources"; "General Cancer & Cancer Treatment Terminology" (in this section); "Prescriptions and Drug Information".] Sample Searches For This Topic:

Sites You Might Find:

Side Effects
Sample Searches For This Topic:

Sites You Might Find:

Clinical Trials
[See also "Finding Clinical Trials".] Sample Searches For This Topic:

Sites You Might Find:

Fatigue:
Sample Searches For This Topic:

Sites You Might Find:

Newly Diagnosed:
Sample Searches For This Topic:

Sites You Might Find:

Nutrition:
[See also "Wellness & Lifestyle: Diet & Nutrition"] Sample Searches For This Topic:

Sites You Might Find:

Pain:
[See also "Living with a Chronic Illness: Pain Management"] Sample Searches For This Topic:

Sites You Might Find:

Cancer Pain: Post Mastectomy Pain:
Sites You Might Find:
Prevention
Sample Searches For This Topic:

Sites You Might Find:

Resources & Lifestyle
[See also "Finding Help & Resources".] Sites You Might Find:
Second Opinions:
[See also "Second Opinions: Professional E-Mail, Chat, & 'Ask-A-Doc'".] Sample Searches For This Topic:

Sites You Might Find:

Sexuality:
[See also "Sexual Health Issues".] Sample Searches For This Topic:

Sites You Might Find:

Sexuality: Men
[See also "Men's Health Issues", "Prostate Diseases", "Sexual Health Issues".] Sample Searches For This Topic:

Sites You Might Find:

Sexuality: Women
[See also "Sexual Health Issues", "Women's Health Issues".] Sample Searches For This Topic:

Sites You Might Find:

Sexuality: LGBT
[See also "Sexual Health Issues: LGBT and Sexual Identity Related Health Issues".] Sample Searches For This Topic:

Sites You Might Find:

Survival
Sample Searches For This Topic:

Sites You Might Find:

Talking About Cancer
Sample Searches For This Topic:

Sites You Might Find:

Talking About Cancer – Children
[See also "Childhood Cancer" in this section.]
Talking About Cancer – Friends and Family
Talking About Cancer – At Work & Business
General Cancer & Cancer Treatment Terminology:
Other Terms: "Carcinoma", "Malignancy"; "Neoplasm"; "Tumor"; "Tumour" Sample Searches For This Topic:

Sites You Might Find:

Hotline(s):

FAQ(s):

Cancer Publications on the Internet:

Medical Specialty:

Professional Organization(s):

Patient Support Organization(s) / Discussions Group(s):

Best One Stop Shops:

Example (Strategy)

[See also : "Strategies & Strategic Searching"]

Best Type of Search Engine:

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URL of Current Page: http://www.umich.edu/~pfa/mlaguide/10cancer.html
Links verified week of May 13-20, 2002