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I Just Heard About a New Treatment in the Media: How do I Research it?
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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!
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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.
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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.
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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.
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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!
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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
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