Why heart, for the exceptional patient in the right

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.PrerequisitesIn 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.The ProsConferences present the latest (and often very preliminary) data – but when there is a breakthrough the first place it’s reported is often a conference.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.The ConsTiming 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.Which 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 out.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 ConferencePlan 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.


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