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CancerGuide: Researching Your Options

Finding Information
Researching Media Stories
Understanding What You Find
I Just Heard About a New Treatment in the Media: How do I Research it?

I get a fair number of e-mails from patients who've just heard about a new treatment in the newspaper, or on TV (or in other popular media), and who want to find out if it could really help them. Often people hear from a friend who doesn't have the details, or perhaps the report they saw was very brief. So they don't have the details and don't know where to look. But I've discovered that if they can give me just a tiny bit of information, I can usually find basic information in only a few minutes, even if I've never heard of it before. With just a few hints you can learn to do the same! I'll start assuming all you have is a few clues from talking to a friend or hearing a brief report on TV.

How to Find It!

My first goal is to get basic information about the treatment - including its name, who is doing it, and enough to tell me whether the treatment applies to my situation. Usually a careful review of the actual news stories, official press releases, and the like are enough for this (See below for suggestions on how to put what you find in perspective).

First List Your Clues

First you need to assemble your list of clues. It's helpful if you can remember at least something, but you don't need very much!

Possible Clues (You don't need all - just one or two!):

  • The name of the drug.
  • The name of a drug or bio tech company involved in the research
  • The name of a medical journal or medical meeting where the results were reported.
  • The name of a doctor involved in the research
  • The name of a hospital where the research was done.
  • The name of the newspaper or TV show where it was reported

Then Find The News

My first approach is to type one of the clues, preferably the name of the drug or the company, into Google, my favorite search engine. Normally this brings up several hits and maybe many. I am always looking for company web sites and material from professional conferences, but will review popular articles too. If it's been reported in the media, it's virtually guaranteed its also on the web, so if you don't get any hits it's almost certainly because you didn't use quite the right words. Remember, spelling counts - try different variations of the spelling if you aren't sure. If the name has hyphens try it as one word or two separate words. If you using the name of the doctor, try using both the first and last name and adding a keywords such as "cancer" to help narrow it down. If your doctor's name is "John Smith" you're going to have trouble because that's such a common name. If it's "Difram Heeblink" you're much better off!

Usually your search at Google will be richly rewarded, but if it's not, remember that virtually every organization, including hospitals, medical journals, government agencies, professional societies, newspapers, and TV stations has a web site. You can use Google to find these web sites. From there you might be able to find info on the treatment in question. Another approach is to search high quality medical sites like MedScape to see if they are reporting on it.

Significant medical stories virtually always make it onto the newswires, so another powerful approach is to search an archive of media stories related to cancer. This way you can probably find something very similar to the news report which inspired your search. Then you can sift it for clues that will lead you to more detailed information, such as the name of the company or the drug.

Some places to look:

  • OncoLink Cancer News is OncoLink's archive of the Reuter's health news going back months and years.

  • NewsWise is a press release and news site aimed at journalists. But even if you are not a journalist, you can search or browse their medical news archive for free. Although the archive isn't cancer specific, they cover primary sources, such as original press releases and announcements of research results, rather than news stories. Note that some items will be listed as "embargoed" until a certain date. Reporters who can prove their credentials can get a login which will let them see these, but you may have to wait until the embargo date has passed to get access.

But what if you don't have a clue?

... hey sometimes, I feel like that too, but seriously, if the media has recently reported any real breakthrough which is relevant to your situation, you have an excellent chance of finding it - even if you are literally clueless!

The secret is to browse an archive of recent news reports chronologically (See the main article for links to news archives). What you have to do is browse all the news for each day, looking for anything relevant to your situation, starting from today, and working backwards in time one day at a time until you find what you are looking for. This is somewhat tedious, but actually there typically aren't a huge number of stories on cancer reported on any one day, so this isn't actually hard. If it's a recent report you shouldn't have to go back more than a month to find what you are looking for.

Now if you didn't have a clue about the nature of the report, how are you going to recognize it when you see it? The answer is you might not. The beauty part is it doesn't matter! If you find something important which is relevant to your situation, that was probably what you were looking for (and if not, so what?). On the other hand, if you find nothing, the chances are very high whatever report started you on this search isn't relevant to your situation in the first place.

 

Oh By The Way ;-)

In case it hasn't occured to you, generally similar techniques can be used to search the Internet for anything. Since the Internet has information on almost everything, now you know how to find what you need to know about virtually anything!



Now Find The Actual Results

Usually the media reports on results that were presented at a major conference, or which have just been published in a medical journal, usually a prominent one. Your initial search has probably revealed enough to be able to tell whether the development is of further interest to you. If so, what you need to do next is find the actual results. The media article almost always gives the orignal source. Given this, if the information was reported at a scientific meeting, my page of links to oncology professional society sites may point you in the right direction, or you may be able to find the organization's web site using a search engine like Google. In the case of journal articles, the articles may not be on the web; you may have to go to a Medical Library to get the actual article. First line journals like, Science, Nature, The Lancet, The New England Journal of Medicine, and JAMA are likely to be carried in any major public or college library. Most journals do have web sites, and while the content is usually for subscribers only, sometimes they will make an exception for things of great public interest. Again, you can probably find the journal's web site using Google.

Putting it in Perspective

It turns out most of the time "breakthroughs" reported in the media either aren't breakthroughs, aren't available, or don't pertain to your type of cancer. But sometimes the reports are about truly exciting new treatments. And it could be just what you are looking for, so it's certainly worth checking these things out. At the same, don't be surprised if it turns out that it isn't the miracle you were hoping for. I urge you take a broad view of all the possible options, rather than focusing narrowly on just one thing you happen to have heard about. Use the methods outlined in CancerGuide to research your disease and find both the standard treatments and promising new treatments. Then you'll have the background to be able to tell if this new treatment is the one, and if this treatment isn't the one, you may find something else that truly is promising for your situation.

A few questions to ask yourself:
Is the treatment being tried on humans yet?
What you are primarily looking for is promising results in humans, and sometimes that is indeed what has been reported. But often the media report on basic science discoveries which may sometime in the future lead to new treatments, but which are not treatments in and of themselves. They also commonly report on promising results in animals when the first human clinical trials are years away.
Is the treatment appropriate for your type of cancer?
Most cancer treatments are specific for a particular type of cancer. A new treatment with stunning results in say lung cancer, is likely to be useless in leukemia (and vice versa). So ask yourself whether the results actually pertain to the particular beast you are fighting. Some treatments do attack a common weakness which may apply to several cancers. If there have been promising results in a cancer different from yours, and there is a particular reason to think that this treatment might work on your cancer, then you might consider being one of the first with your cancer to get the treatment. Obviously, this is only appropriate if there is no known effective treatment for what you have. Look for animal results in your cancer, or a mechanism of action which is known to fit your type of cancer. For instance, if the treatment targets a particular genetic defect in the cancer cells, and your cancer is known to have this defect, it might be promising. If there are treatments known to be promising for your particular cancer with human results, I believe those are likely to be a better bet, than something which has promising results only in other cancers.
Is the treatment appropriate for your situation?
If you have localized cancer which has been effectively treated with standard methods, and you are presently free of detectable disease, a new treatment which in preliminary trials shrinks tumors in advanced cancer of your type is probably not appropriate. Likewise, if you have advanced cancer, and the report is about a new treatment to reduce the risk of recurrence after a standard treatment, like surgery, it doesn't apply to you.
Is the treatment really promising?
When you do find the actual results you need to read beyond the hype and between the lines. Surprisingly often, I see reports of the first use of a new treatment which are reported with promising sounding words even though the results really are not terribly impressive yet. Often it will turn out that the treatment has only been used on a few patients. Perhaps it's proving to be feasible to give, and a few patients have stabilized for a short time, or perhaps just a few have actually had major tumor shrinkage, or maybe there were signs that the shrinkage was short lived in most cases. What you consider promising will, of course, depend on your other options. In some situations it is appropriate to try something with even early evidence.
Is the treatment actually available?
New treatments which are being used in humans are usually available only in clinical trials. You will want to familiarize yourself with the clinical trial system if you are going to be going after a trial. You need to find out if there are any open trials you would qualify for. In rare cases, the treatment may use only drugs which are already approved, or standard techniques, and might therefore be available outside of a trial. In the USA, if the treatment involves new drugs which are not yet approved, but which are very promising, it may be possible to obtain it under what is known as "compassionate use ."


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This CancerGuide Page By Steve Dunn. © Steve Dunn
Page Created: 2001, Last Updated: October 20, 2003