As a twelve year survivor of colon cancer helping others I am frequently called upon by survivors seeking information on their specific type of cancer. When I do so I use certain valuable sources. Not all patients can reach me but many are frequently seeking through this tangled web we call the Internet for valuable help. This guide then will take you step through step through an orderly stop at each of the storehouses of cancer information. What you should do is go to each of these sites and obtain the information that you are being led to. Many of these are true goldmines of information. What I would urge, however, is that you not tarry. Get the specific information you have been led to. If there is another source there and you are not familiar with using the Internet, your time would be better spent returning to this page and being led to the next source of information. If there is something else in that area you should be looking at you will be led there later. If you are not, when all is done you can dig down into that area to find what other nuggets are available.
Before starting out I think that I should also emphasize to you that I am not a physician but only a survivor of cancer. Therefore do not take what I am telling you as professional advice, but only as one survivor talking to another. Your best advice will come from a competent physician.
Let us then begin our search. First of all, you should have as much information at hand from your doctor as you can obtain. You should know the type of cancer you have and the stage it is in. Then you will better be able to find what is relevant. Once you have this the first and most basic stop is CancerNet, run by the National Cancer Institute. What you will be looking at are the PDQ statements of NCI, starting at the "Physician's Statements" choice. These are the full explanations of NCI as to the nature of the various types of cancer and the treatments given. Although it may be difficult for you to follow as a layman you should get both the physician's and patient's versions. You can then lay them side by side and as the physician explains to you about your cancer and how he intends to treat it you can match it with NCI's information. You will then be able to ask more informed questions and be more aware of what is being done for you and should be done for you.
When you do get to this point you will see that the various cancers are listed in alphabetical order. Find the files that match your own diagnosis and save them to print out later.
Now, as I warned you you are in the midst of a great resource for information on cancer. We are going to explore more of it later, but I want you to forego the temptation now and instead to return to this homepage so that we can explore in a more orderly manner some other sources to lead you down the road of discovering more about your cancer.
Our next stop is going to be at OncoLink. Consider OncoLink to be your own home base for the rest of the time you are being treated for cancer and later. It is one of the best set up sources of information found on the Internet and will provide you continual information on the latest in the cancer treatment field. Once you are there do whatever your web browser requires to save it as a bookmark so you can check back regularly to find out what is available to you in the way of new updated information.
The particular portion of OncoLink we have gone to first is a parallel to PDQ. It provides general information on various types of cancer, but not necessarily using the same terms as PDQ. You will find yourself at the top of an alphabetical list. You should again download articles relevant to your disease. Forego for now wandering around the rest of OncoLink. We'll have plenty of opportunity to do that later.
We now have basics on your cancer. Once you have studied these we are ready to dig even deeper into both OncoLink and CancerNet. Let's continue on in OncoLink while we are there. The next thing we want to do is to search for articles scattered throughout OncoLink that pertain to your cancer. To do this you enter search terms. You can start with just the name of your cancer. From there you can put in other related terms you have learned from your physician or from literature you have read, including what we have just gotten from OncoLink and the PDQ. For example, treatments used can be searched for, institutions you have heard of, physicians, and anything else. You will be returned a list of all articles using those terms. These can be viewed onscreen and if they look at all promising saved for future reference. You may make what is called a Boolean search. If you are not familiar with these, it is not as complicated as it sounds. What it means is that by attaching modifiers you can add to or delete from the number of finds made. For instance using AND looks for a combination of the words selected, while NOT eliminates any finds also including the words after that word. Using OR tells it to look for either of the terms given. To do this go to Keyword Search of OncoLink. This should provide you with even more literature to study.
We are leaving OncoLink for now, but will return to it later. Having begun to gather basic information we are going to return to NIH's CancerLink to search it for more detailed information. This will be done in much the same way as was done on OncoLink. It may duplicate the information, but this is worth it for any new information found. In fact, when I'm searching I find many articles that seem to be by the same person and on the same subject. I often save them all to make sure they are the same,and perhaps that one is not an update of the other. To search CancerLink we need to go to the Cancernet Database, entering the appropriate search terms where shown.
Once this is done we will have pretty much gathered up the basic information available from both CancerNet and OncoLink. There are other sources for information on CancerNet. Most of these have already been picked up by your previous search but at the risk of duplication, I frequently go to them because I want to make sure I haven't missed any literature on something as vital as cancer. So next you should check Citations and Abstracts by Topic. For the most part this will give you abstracts of articles in the medical literature matching your search terms. A citation to them is presented and you can get them from a medical library if interested. It may also turn up other information NCI has on the Internet.
After this you need to know periodically what changes there have been in CancerNet so once a month I would check its updates at Monthly Update Information.
Likewise OncoLink is regularly updated so I would check once a month or so to see if you have the latest information by going to What's NEW on OncoLink?. Likewise the latest in cancer news always appears there at Cancer News.
Having looked at these matters let us turn to other important checkpoints on cancer.
A good starting point is another home page similar to this one. Although there may be some duplication, it is important to use as many different reference viewpoints as you can, and here again we have a patient helping other patients. So I would urge you now to go to CANCERGUIDE, written by Steve Dunn.
One of the most important pieces of information you next need to know is whether there are any clinical trials being conducted concerning your cancer. If you are eligible for these you will be at the cutting edge of the newest of medicine, often being done by leading physicians at leading institutions. Also, you may find that these are paid for, at least in whole or in part. But at any rate, you should know what is going on.
OncoLink provides you information on available clinical trials at Clinical Trials.
The next thing you must consider is support. Cancer patients need lots of support and indeed I don't think I would have survived without it. Family and friends are your main anchor and you should look to them. But help is going to be needed for financial assistance to deal with this costly disease, even if you have health insurance. You need also to talk to those who can help you spiritually and mentally and a strong source of support are those who have been there before you, other cancer survivors. OncoLink helps you to find all of these by going to Psychosocial Support, Cancer Organizations,and Spirituality.
While you are being treated for cancer you may have pain problems. There are medications available for pain and you should be aware what they are and their effects on you. To do so start with the index to this reference, Talaria.
Regrettably, cancer is not now curable for all. For those who have lost a loved one to cancer there is excellent help on the grieving process from GriefNet.
Although it was established mainly for breast cancer patients the Breast Cancer Information Clearinghouse has information useful to all cancer patients. For a list of publications available to cancer patients from the National Cancer Institute one can look to Publications for Patients and the Public. Other NCI information is found at NCI Adult Cancer Information.
Also available is a listing of publications by the American Cancer Society.
BCIC also has a list of 800 Numbers and Information.
There is also information on various specific types of cancer:
The day-to-day diary of a Bone Marrow Transplant patient is found at Day by Day with a Bone Marrow Transplant Patient.
As was discussed above some of the best support there is is from other cancer patients. In order to find support groups for breast cancer of all types in your area consult the extensive list organized by state in BCIC's Support Groups for Patients and Families.
One may search the BCIC information by using their Searchable Index.
Other support for breast cancer patients is available through Community Breast Health Project. Among other information there there are discussions among survivors and others entitled CBHP Brainstorming Sessions. Hearing the stories of other survivors is always a powerful experience for cancer survivors and in order to encourage others to send in their stories The Community Breast Action Project has started a project, naming it after the woman giving the opening story, Jenilu.
Another organization providing support for breast cancer patients is Y-ME.
Yet more information is available from Canada via the Breast Cancer Action in Ottawa, Canada.
Another excellent resource used in making this guide was Quick Information about Cancer for Patients and Their Families, written by Judy Gourdji and Susan Hinton as part of the Clearinghouse for Subject-Oriented Resource Guides at the University of Michigan.
I am the Internet Liaison for the National Coalition for Cancer Survivorship. Many people have asked me who NCCS is and what its liaison does. NCCS was founded in 1986 by Fitzhugh Mullan, M.D. and two other survivors of cancer to provide psychosocial support for survivors of cancer. Survivors have always been defined by NCCS as anyone receiving a diagnosis of cancer from the time that diagnosis is received, for they have survived until then and hopefully will for many years to come.
Insurance always being a problem for cancer survivors, NCCS has available here on the Internet a paper entitled Cancer Treatments Your Insurance Should Cover. NCCS now has over 3,000 members nationwide seeking to meet the needs of survivors and their families by:
NCCS can be reached at
National Coalition for Cancer Survivorship
1010 Wayne Avenue
Silver Spring, MD 20910
(301) 650-8868
This guide was initially released on December 14, 1994 by Marshall Kragen (mkragen@access.digex.net). This is update 1.3 as of May 10, 1995. Thanks to Arthur Flatau for his helpful corrections. Please let me know of any errors made so that they can be corrected and if you have additions or updates also let me know so that this guide will always be up to date.