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CancerGuide: Researching Your Options

Finding Information
Getting Basic Info on Your Cancer: An Internet Tour
Understanding What You Find
Where to Get Basic Information About Your Cancer On-Line

This page is a tour of important Internet sites for getting basic information on your cancer. Rather than presenting a long list of cancer sites, my aim is to give you a tour of a few very high quality sites. By the time you are done you will have gained a basic understanding of your cancer and its treatment. Generally for this tour I have chosen sites with general information on cancer or basic information on a wide variety of different cancers (probably including yours).

Getting the basic information is only the first step, but it is an extremely important one as it is a prerequisite to an in depth understanding of both standard treatment options and cutting edge experimental options. If you are just getting started with your research, I strongly suggest that you spend some time with these sites! I also include information on interactive discussion forums - mailing lists and newsgroups. Signing onto a group discussion can be one of the most fruitful ways of getting information quickly from people who've been there.

Note: All links in this page will open a new window so you can easily check out a site and then continue the tour.


Key Websites

cancer.gov

The US National Cancer Institute (NCI) maintains cancer.gov, a comprehensive source of cancer information including information on state of the art cancer treatment, information on clinical trials including a database of over 1800 open trials, and much more. cancer.gov is one of the most important first sources for cancer information on the net.

State of the Art (PDQ) Treatment Statements

The NCI's state of the art treatment statements are a good place to get an overview of the staging, prognosis, and treatment of your cancer. There are actually two PDQ Treatment Statements for each kind of cancer, one for patients, and the other for physicians. You can access both statements even if you aren't a doctor.

The first place to start is the Patient Treatment Statement for your kind of cancer. This is a general introduction in easy to read language. The patient statements tend to be short on detail about specific treatment options, but they will help you to understand other information you come across.

The Physician's Treatment Statement gives detailed information on the accepted best standard therapy, along with information on diagnosis, staging and prognosis. You shouldn't look to the Physician's Statement for comprehensive information on new and promising treatments, although some of these may be mentioned. Naturally, the physician's statement is highly technical and it can be extremely blunt about statistics.

Both the Patient and Professional PDQ statements are found on Cancer.gov's PDQ Cancer Information Summaries page.

PDQ Clinical Trial Database

After getting information on the standard treatments for your cancer, you can search the PDQ database for clinical trials of new treatments. I have detailed information on searching PDQ (and many other trial databases) in my article on Finding Clinical Trials on the Internet

Other Information in Cancer.gov

There is also other useful information in cancer.gov including statements on new drugs, and breaking news as well as subjects such as supportive care. CancerLit is a large, freely accessible database of references to the technical medical literature on cancer. In addition to access to the database, Cancer.gov has a selection of prepared CancerLit searches on most types of cancer (Find the CancerLit page under "Cancer Information" from the main page). A tightly focused search in CancerLit or MedLine (MedLine is a more general database of medical references) for your specific situation is likely to yield a much more relevant selection of references than a pre-prepared search, so these prepared searches are no substitute for MedLine access, but they are certainly worth a look. There there is also a rudimentary ability to conduct your own searches of CancerLit so you can conduct your own search, but I recommend more powerful MedLine search engines because it is easier to focus the search to get just what you need with.

National Comprehensive Cancer Network

The National Comprehensive Cancer Network is an association of NCI designated Comprehensive Cancer Centers - which are centers of excellence. Their web site has awesome patient oriented information for a limited number of the more common cancers. Their information is some of the most comprehensive I have found anywhere with detailed information on the process of diagnosis and treatment as well as "decision trees" which allow you to get an idea of the appropriate treatments for your situation. You'll get a real idea of the steps you're likely to go through from diagnosis to treatment and beyond. This includes detailed information on post-treatment follow-up for localized disease - incredibly useful information which is generally missing from other sites.

They also have professional level clinical practice guidelines for a wider variety of cancers. Obviously these are technical, but again include a level of detail that exceeds other sites and again include follow-up recommendations - which again isn't found elsewhere; I found these to be relatively conservative though. Their information appears to be timely and updated frequently.

While the detailed solid reviews of standard treatment are very useful you won't find up to the minute detail on promising or experimental treatment. Also many of the recommendations for difficult situations generically call for a "clinical trial" as the preferred treatment. I disagree with this because a "clinical trial" does not specify any one treatment, and suggests that any clinical trial is better than the best standard treatment which I think is unreasonable on the face of it. In my cancer (renal cell carcinoma) the generic clinical trial recommendation is given for advanced disease even though in over a decade of study if I have learned anything it is that although clinical trials can be promising and even lifesaving their promise varies widely and extremely careful and informed selection is required to get better odds than offered by the best standard treatments.

Note: Unfortunately, the design of this web site prevents me from linking you directly to the patient or professional guidelines. You'll have to explore the site and find them yourself.

CancerConsultants.com

CancerConsultants.com contains detailed patient oriented information at just the right level for the intelligent patient seeking the latest in treatment developments. All of their information is original - not just a rehash of what's found elsewhere - and maintained by real experts. Although not every cancer has specific coverage, those that do have very up to date pages maintained by an expert on that form of cancer.

The news section is an up to date, no B.S, patient friendly review of important new journal articles, along with a reference to the original research (Unfortunately they don't include the MedLine abstract, but you can easily look this up yourself. See my article on MedLine access). While nothing can be comprehensive, this is the best place I've seen to get a well chosen, up to date, list of interesting developments in your cancer. This emphatically does not mean each treatment mentioned is a good option! Significant negative results as well as relatively marginal results from new treatments are also reported. It's up to you to judge. The best way to use the news section is to find the news for your specific type of cancer which gives you a concise list of recent developments.

They also have extensive clinical trial information including a trial database, and much more. For more information on their clinical trials database and free clinical trial search service, see the description of eCancerTrials.com in my article on Finding Cancer Trials on The Internet

Although CancerConsultants.com is a commercial site, it comes across as only barely so. There are very few ads and those few are very unobtrusive.

The American Cancer Society

The American Cancer Society maintains basic information on all the major cancers as well as extensive information on alternative and complementary therapies as given from a conventional and generally skeptical point of view. I certainly recommend checking out the basic information on your type of cancer, and while the alternative / complementary section will obviously not lead you to the latest "one true miracle cure", the information on complementary therapies (those which are used along with conventional therapies rather than instead of) may inspire you to think of things you can do for yourself that may enhance the quality of your life. To get started with the ACS's information, click on the word "answers" on the first page.

OncoLink

The University of Pennsylvania's OncoLink is a giant among cancer web sites with extensive information about every aspect of the disease. It is another great place to continue your search for cancer information. OncoLink has a great deal of original material, as well as pointers to other information sources on the Internet.


Other Web Sites to Check

This is a brief list of other sites which are worth a look.

  • People Living With Cancer
    This site, from the American Society of Clinical Oncology, is written to be understandable without being condescending and has more current basic information than most sites. It also makes a real effort to help patients gain the tools to understand their situation, somewhat like CancerGuide. [Reviewed August 2004]
  • CancerBACKUP (UK)
    This British site has a wealth of information on all aspects of cancer and also includes a free telephone helpline. [Reviewed August 2004]
  • CancerLinks
    Mostly a collection of links but a big collection of links. You may well find sites specific to your type of cancer here. [Reviewed August 2004]
  • CancerSource
    This commercial site is backed by some of the best known cancer doctors in the world, and has a lot of content. I find it a little hard to navigate and sometimes more institutional than I like, but there's a lot there at different levels. Don't be afraid to look at the doctor's section either! [Reviewed August 2004]
  • MedScape
    MedScape isn't cancer specific, but I think it's the finest general medical site on the net by a mile, and there is plenty of oncology information, as well as general resources such as a drug database. MedScape is oriented towards professionals but don't let that deter you! Free registration is required.

Cancer Specific Web Sites

CancerGuide's Specific Cancers Section includes a list of high quality web sites devoted to specific cancers. The emphasis is on non-profit sites, which offer no-holds barred information, especially other patient created sites. If there is a site for your specific cancer, in addition to basic information, you may find information on new treatments as well as support resources such as mailing lists and patient stories.


Web Search Engines

There are numerous sites that give you the ability to search the entire web for any topic. Since these sites index the whole web, not just cancer information, there will be lots of pages which contain your search terms but which have nothing to do with what you're looking for. Using search engines takes time, and requires some practice. But the power is immense - there is a good chance you'll find a few gems that weren't on the rest of the tour.

Google

The best search engine I (and the rest of the world) have found by far is Google. What separates Google from the rest is an amazingly accurate ability to figure out which pages are most relevant to your query. Google gives you these pages first, and more often than not what you're looking for will be found in the first few search results. Google's algorithm is based on the simple idea that pages which lots of other pages link to are probably the most authoritative ones. This also means the results are unbiased in that, unlike many other search engines, no one can pay to have their site come up first. Google does present advertisements based on your search terms, but they are extremely low key and clearly separated from the search results. Google keeps on innovating and adding new features while retaining their simplicity and honesty.


Internet Support Groups

Joining a good support group on the net could easily prove to be the single most important thing you do to find out the latest and best for your cancer. With online support you can tap the collective wisdom of hundreds or even thousands of patients (and maybe a few professionals too) who are dealing with the same problems you are. See my article on Support Groups for how to find and use online support. Although this article is in the Mind and Attitude Section, support groups are every bit as important for their power to inform as they are for their power to support.


Another Good "Tour" for Getting Basic Information

Now that you've finished the CancerGuide tour of Internet sites, check out the Cancer Survivor Toolbox from The National Coalition for Cancer Survivorship. CanSearch Navigator is another excellent tour of on-line cancer information sources which leads you step-by- step through the process of gathering basic information on your cancer. Although it covers many of the same sites as this page, the step by step approach gives it a different and worthwhile perspective. It is also more detailed and comprehensive than this page. Give it a look, especially if you're feeling lost or overwhelmed.



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This CancerGuide Page By Steve Dunn. © Steve Dunn
Page Created: 1995, Last Updated: September, 2004 10