More than once in this blog I have said that I am not entirely sure it is wise for new Warriors to bury themselves in the message boards looking for either support or information. Why? Because many of the people on the boards, while they mean well, can too often give a distorted picture of their cancer experience, offer advice that is just not grounded in generally accepted medical knowledge, or take on the role of physician and give warriors answers that may or may not be on target for the warrior's specific situation.
For example, a warrior wants to know the long term prospects of their cancer. As I wrote in "You Have X to Live," if most physicians can't answer that question, you can bet a cyberspace writer writing from their unique experience can't. Keep searching and you can get more and more confused. After a while, a message shows up here (or elsewhere) with a frantic "there is so much information. I just don't know what to do." That means this warrior, if I am reading correctly, has a very serious case of cancer "information overload." And often that overload is compounded by what friends and relatives have to say, much of that based on some knowledge about somebody they knew who had cancer (and most likely not RCC).
As I read some of these e-mails I have a recurring question: Why not just ask your doctor? There are four stages of kidney cancer. There are several different varieties within those four stages. There is your personal health history to be considered, not to mention your age. By the time you are diagnosed, your physician knows your status better than anybody else in the world and can speak to the specifics of it. And since he works for you, be sure to ask every question you can think of. More importantly, if you have read something on the web that contradicts his information or mentions something he has not discussed with you, then ask him or her specifically about that information. If you are going to browse anyway keep a notepad nearby so when you come across something that contradicts what your doctor said, make a note, call him up and ask him that question.
The idea here is not so much to stay completely away from the message boards, but to keep the information you get there in perspective.
It is true, some physicians are not experts on RCC, especially ARCC, and too often some think they are. If you are not sure, ask your current physician (hopefully an Oncologist), how much experience he or she does have with the disease, how many cases have they treated, how many of those cases fit the Stage of the disease you have. Instead of reading the boards looking for information, call the oncologists in your area and find one that might have more experience. If your insurance carrier will not let you change, then suggest to your oncologist that he or she consult with one of the other oncologists. Don't be embarrassed, we are talking about your life. Most physicians will be happy comply. (I have heard they will often go to bat for you with the insurance provider.)
A friend of mine printed out an ARCC fact page from a reputable medical website, took it to his doctor's office, laid it on the conference table and said, "Now, explain all of this to me, point by point." Wish I had thought of that.
The message board can get a little habit forming, but I believe a new Warrior might best consider a different approach to insure he or she understands at least the basics before catching that browsing bug. Once they do, they can much more easily separate the good stuff from the well, you know.
And solid information can diminish a lot of the stress Warriors go through trying to figure it out. It is a very complicated business and every case is unique in one way or the other. And all of us were brand new to the subject the day we were diagnosed. I suggest you learn as much as you can...but proceed carefully.
I avoided the boards for more than a year after I was diagnosed and am glad I did. Even today, they can give me a needless fright and I am much further down the road of education than 99% of new warriors.
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