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September 15, 2005
Advice to Collns
Collns posted a request to a board I read regularly for information about the best treatments for his prostate cancer. As I wrote an e-mail to him the moderators deleted his post so I was never able to complete the e-mail. This is the e-mail I tried to send him.
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collns,
I'm a non-traditional medical student. In this day and age you are faced with two dilemmas: your doctors are in a culture that is strongly advocating that they should give you maximum choice. Yet you don't have the information to really understand the choices. Meanwhile, there is so much information out there that it can rapidly overwhelm you. The right treatment for you is an intensily personal choice. Even if two identical patients presented with the same cancer they would often make two different choices.
The choice you need to make is simply the choice you are most comfortable with. You need to know that your doctors don't have any secret weapons or secret knowledge. All the technology is for sale and advertized heavily. The companies know which doctors have it and if you want it just ask them for a referral. Your doctors have no secret knowledge, indeed the practitioner may not have done the research so recently that they have the latest information. They may have formed opinions based on personal experience that aren't really valid. In this way experience is a double-edged sword. You may not be a doctor, but you can reason your way through the information. What I would not expect is for your doctor to explain everything to you in the most intimate detail possible. That's what the literature is for, and, truth be told, only you can do your research.
This problem of making the right choice can be solved. I recommend you get a medical dictionary, an anatomical atlas (3rd Ed of Netter's Clinical Anatomy is good a good start), a pen, a pad of paper (or ten), a 4" 3-ring binder. These materials are necessary, don't just rely on the internet: it's not fast enough or intimate enough.
Now that you have your materials in hand (amazing how much paper is still involved, eh?), start studying the abstracts available on PubMed (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi). This is the catalog for the National Library of Medicine. I'd set aside a work-week of evenings for this. Search returns with green and orange horizontal bars across the top of the icon are available online for free. Do several searches and develop a list of keywords. Read a lot of abstracts. Find some articles, print them, but also look at the bibliographies. Buy a box of printer paper. Not a ream, a box. Find the books and articles that are cited frequently: they will be most useful to you. If you find during the PubMed searches that you need to turn to the larger internet, I would recommend against reading anything from a dot-com site, except, maybe the Merck Manual and a few others you may come across in your research. Bias your searches heavily toward dot-edu sites. Once you get a sense of which books and articles you really want, take a weekend and go to your nearest medical school's library all day, both days. Take lots of change (like $50) to make copies. The library may not be 'open to the public' but I seriously doubt they'll turn you away. If they do, let me know so I can out them in through the medical blogosphere. No, I think it will be totally fine. The librarians should help if you need it.
I did a little research on my own before getting into medical school, and I've compiled my most useful links on my website. This isn't a plug for my site, but it's organized for the purpose, so no need to repeat that organization here.
That's it. No one knows where the research will lead you, and you alone will make the decisions about where that research goes. The learning curve is steep and doesn't level off. Ever. Don't just dump all your print-outs on your doctor. When you go to your doctor, be prepared to engage in a high level discussion about two or three options. Be prepared to consider and evaluate a new alternative on the spot. This is going to be a lot of hard work but you're fighting for your life, and everyone touched by your life, even after surgery, if that's what you choose.
Good luck and please keep me posted,
Niels Olson
(410)212-1281
niels.olson@gmail.com
http://nielsolson.us
Posted by Niels Olson at September 15, 2005 4:44 PM