Where to Get Basic Information About Your Cancer On-LineThis 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 Websitescancer.govThe 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 StatementsThe 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 DatabaseAfter 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 InternetOther Information in Cancer.govThere 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 NetworkThe National Comprehensive Cancer Network is an association of NCI designated Comprehensive Cancer Centers – which are centers of excellence.
Their web site has awesomepatient 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.comCancerConsultants.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 InternetAlthough 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 SocietyThe 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.
OncoLinkThe 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.