Attending a Professional Conference to Research Your Cancer
Why Did I Write an Article Which Will Help Only a Few "Exceptions"?
Even though only a few will find this particular path useful,
this article belongs because CancerGuide is about alerting you to exceptional
possibilities. As you've probably gathered if you've spent any time on
CancerGuide, I definitely don't believe one size fits all. Instead, I believe
there are a thousand different paths, and it is my great privilege to be able
to illuminate a few of them. I also believe ordinary people can do exceptional
things when they are motivated and the door is opened. Opening doors that are
left closed elsewhere is what CancerGuide is all about.
It turns out that most professional medical conferences are open to anyone
who wants to pay the registration fees. That means you! Though I'm a layman,
Since I recovered from my cancer, I've attended several professional
conferences and I've always found it exciting and useful. Laymen can use these
conferences as a way to do advanced research on their disease. At this year's
ASCO (American Society of Clinical Oncology)
conference I met a woman who was attending the conference to help her gather
information for a good friend with advanced pancreatic cancer, and I've met
other laymen as well. While this is most definitely not for the faint at heart,
for the exceptional patient in the right circumstance it can be very valuable.
In order to be able to get anything out of a medical conference you need to
be comfortable reading the technical literature before you go. If you've never
seen a journal article this probably isn't for you. But if you're science
oriented and comfortable with journal articles, you can do this. Of course, you
also need a detailed understanding of both your particular clinical situation
and its usual treatments. Presumably you've been digging into some of the
cutting edge and already have a pretty good understanding of some of the latest
developments. If you've read many clinical articles you're probably already
familiar with the jargon of oncology, clinical trials, and biomedical
statistics. If you're not, time spent reading up on the basics at CancerGuide
and elsewhere will be time well spent.
- Conferences present the latest (and often very preliminary) data - but when
there is a breakthrough the first place it's reported is often a
- You will probably have the chance to meet and talk face to face with some
of the top and researchers and doctors in the field.
- Timing is everything! Conferences are typically held yearly and sometimes
every two years. If you need answers now, and the conference which would help
you isn't for another six months, you're just out of luck.
- A conference is no substitute for systematic research of your options.
Don't assume there will be a review of all the latest options and strategies
for your situation (though you might get lucky particularly if the conference
is aimed at your particular cancer). Remember a conference is not a
comprehensive menu of treatment options - much of the data presented at
conferences is very preliminary and on the edge. Though you may find something
or meet someone which makes the difference, your best option may well be
something which isn't even discussed at the conference.
- Everything is technical. Remember it's a professional meeting!
- It's expensive. You will have to pay for your travel, lodging, and airfare
and usually several hundred dollars to register for the conference.
- Travel is hard when you're ill. When I in the throes of advanced cancer I
was certainly in no condition to go to a conference. But perhaps a friend or
family member could go in your stead - like the woman I met at the 2002 ASCO
convention was doing for her friend. And of course, many cancer patients, even
those with a dire prognosis feel relatively well.
- Much of the information from some conferences is posted on the web not too
long after the conference (and sometimes immediately after) - so you may not
need to actually travel to get the information. You might be able to contact
some of the doctors outside of the conference to substitute for some of the
face to face time you'd get at a conference.
See my Article on Searching Professional
Society Websites, for some of the big organizations (with correspondingly
big meetings). Also check for professional organizations of any non-cancer
specific medical specialties which deal with your cancer. The chances are high
they'll have an annual conference. For instance, my cancer, kidney cancer, is
often, at least initially treated by a urologist. The American Urological
Society has a large well attended conference. Many disease specific advocacy
organizations and foundations put on annual or biannual technical conferences
specific to that disease. Research the organizations for your disease and find
Make sure any conference you choose is clinically oriented! Many meetings
concentrate on basic science - lab studies. Not only are these meetings are far
more technical than clinical meetings, very few of the papers are about
anything which is being used in patients now.
Tips on Doing a Conference
- Plan In Advance: All but the smallest meetings have choices as to
what to attend. It can be completely overwhelming if you're not prepared. Try
to plan what you're going to do in advance - if possible get schedules and
abstracts before you actually arrive at the conference. Whenever you manage to
get the schedule, go through it and figure out what you want to attend and who
you want to talk to. When possible this means reading the abstracts relevant to
your situation. This can take a fair amount of time.
- Take Notes: Carry a notebook with you at all times and use
it! A small voice recorder and digital camera might also be useful. At the
2002 ASCO conference there were signs everywhere that recording wasn't allowed
but people were taking digital pictures of the posters anyway and no one seemed
to mind, despite the profusion of hostile signs.
- Poster Sessions: Large conferences like ASCO have various types of
sessions and exhibits, including several different types of lectures and a
glitzy exhibit hall. But I think the best part is poster sessions. A poster
session is a hall where researchers put up a posters describing their work. The
cool part is that one of the researchers will be hanging out at each poster and
you can just go up and talk to them.
- Introduce Yourself as a Layman but Don't Be Shy!: In my experience,
most doctors and researchers really enjoy talking about their research - so
don't be shy about talking to researchers one on one! I always explain who I am
up front. I've found they're almost always more than happy to talk to me
anyway, and may even take some extra time to explain things. Plus it gives me a
"free-pass" to ask stupid questions! It's a little different when
asking questions after a lecture or seminar though (see the next point below).
- Take Care Asking Questions in Lectures: If you're thinking of asking
question at a lecture session rather than one-to-one, I think some
circumspection is in order. I have seen laymen take up a lot of time with some
just awful questions. My Advice: Ask a question, don't tell a story. Be brief,
crisp, and clear. Don't ask for advice on your personal situation. Think hard
about whether you can figure out the answer from what you've already heard and
whether your question would be of general interest. You can often catch the
presenter after the session is over for more individual questions.
- Don't Ask for Medical Advice Up-Front: OK - I admit I haven't tried
this so I can't be sure, but I don't think it'd go over well if it came across
that you were asking for personal advice, particularly if you're asking the
question at a lecture or seminar. As long your questions are relevant to the
research being presented, this is really as much a matter of how you phrase
your questions as it is what you ask. If you get into a good private
conversation, of course, anything goes!
- Make Contacts: Don't hesitate to ask researchers for their business
cards and bring some of your own if possible. If you'd like a copy of a
particular poster and the researcher doesn't have copies for pick-up, you're
likely to be able to get a copy if you give them a card. Write "please
send poster" or something like that on it. They'll probably send it by e-
mail so be sure that's on your card.
This CancerGuide Page By
Steve Dunn. © Steve Dunn
Page Created: 2002,
Last Updated: Mar 25, 2002