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Guest Blog: How Information Can Help Conquer Fear
Andrew Schorr | March 19, 2012
I spent one day last week at MD Anderson Cancer Center in Houston. ' I was there for a checkup, having first visited the center 16 years ago. There are several new buildings now and its much bigger, but the leukemia center is still on the 9th floor and many of the people who work there are still the same ' only a bit older, just like me. One of the things I love about the leukemia center is that it hasn't moved. The waiting room is sizeable but quickly becomes jammed with people. They have chronic lymphocytic leukemia or CLL, like me, as well as other types of leukemia. Some look the picture of health. Others wear masks and are pushing IV poles. We're all crammed together in a way that intrudes on our personal 'space.' But so what? ' We're all there because we have a serious diagnosis and we want to see doctors who are among the best. The faces show a mixture of fear, courage and confidence.
I have sat in all these chairs. In 1996, it was the fear chair, I had just been diagnosed and I was afraid I did not have long to live. After all, leukemia is a 'terminal' condition right? It was just after getting up from that chair and coming into the exam room with Dr. Michael Keating, a CLL expert, that the fear began to fade because I was being educated. No, it was not aggressive in my case. No, I did not need treatment right away. Yes, my wife and I should consider having a third child. And yes, when I needed treatment there will probably emerge something better ' to make a longer life possible.
The other day ' 16 years later ' I was the one in the confident chair. Dr. Keating had been right. New treatment had come along when I needed it. And it worked. But, last week, there were people sitting around me who were back where I had started. One was a vascular surgeon ' a doctor. He was quite worried with the new diagnosis of CLL. While I know many have more aggressive disease than I have had I basically told him what a savvy patient told me, 'chill out.' It would be very unlikely he'd be dying anytime soon and that he needed information to understand his specific situation.
I told the same thing to a young man sitting across from me with chronic myelogenous leukemia or CML. Here the situation looked even better. An approved medicine had already been working well for months and he felt good. Coming to MD Anderson was to ratify what their local doctor had started. He and his wife were looking for more information from an expert to give them peace of mind. I was happy for them, and knew the doctor with CLL would get there shortly, as well.
The power of information on what you are dealing with can immediately help you conquer your fear. Yes, I was in a whole roomful of people with worrisome diagnoses. It's scary and our friends and relatives lose sleep over what the future holds for us. But there's a medicine we can take and we can urge them to take too: information. Step one is get a clear picture of YOUR diagnosis, not that of the person in the next chair who may seem like you, but may not be. Step two is get the latest information from the most reliable sources that relates to that situation. At MD Anderson that usually gets down to what subtype of a disease do you have, how early is it, and is there an existing or experimental medicine that may match up?
Yesterday I interviewed a urologic oncologist who has prostate cancer himself. It has spread. He agrees that few doctors can keep up on all the new developments and what may apply to each patient. A lot is happening in many illnesses, thank goodness. The information is there. But, as he said, 'You have to be a student of your disease. You have to strive to be in the know, to know what questions to ask so that the best care is served up for you.'
Back in the waiting room the other day, it developed into a 'coffee klatch' like it does almost every day. People don't hide their fears, they share them. And they share information and a boatload more is served up in the exam rooms by devoted staff. The day goes on, information flows in, and the fear begins to melt just a little bit.
I marvel at the process. It worked for me and I know it will work for you.
More Blog Posts by Andrew Schorr
Andrew Schorr is the founder and host of Patient Power ®, a website and radio program designed to connect people with news and experts on health. Want to know more about Andrew Schorr and Patient Power? Go to: www.patientpower.info or follow him on twitter @patientpower. This post originally appeared on the Patient Power Blog.
Comments on this post
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|Carolyn Thomas says|
March 20, 2012 at 5:18 PM
Andrew, I found this post both inspiring - and yet somehow troubling. While your own good news over the past 16 years has indeed been positive (a non-aggressive cancer, successful treatment by the time you did need it), the "confident chair" you're now sitting in seems to have skewed your perspective.
Don't get me wrong - "knowledge is power", indeed - no matter if the diagnosis is small or catastrophic. But it sounds like you were very fortunate that, while you were sitting in your "fear chair", your oncologist did not deliver the prognosis that far too many other cancer patients hear instead, that this IS an aggressive form of cancer, or that further treatments are futile, or that your survival prospects look grim. You did not have to hear those words, but had you heard them, no amount of useful information about your condition would have likely made you feel "confident".
I understand of course that your waiting room story involved only other CLL patients - but offering "Chill out!" as a recommendation for reassuring others seems facile and almost dismissive of their perfectly valid reactions. As author Barbara Ehrenreich observed about her own breast cancer experience in her book "Brightsided", fear, anger and worry over one's cancer diagnosis are not happily tolerated in the "implacably optimistic" cancer community: "Cheerfulness is more or less mandatory, dissent a kind of treason. Within this tightly knit world, attitudes are subtly adjusted, doubters gently brought back to the fold."
I'm not a cancer patient, but as a heart attack survivor with ongoing cardiac issues, I've observed a similar skewed perspective among other survivors (and worse, among some physicians as well). On the spectrum of possible cardiac issues (what I've written about as the "hierarchy of heart disease"), there are those with well-controlled stable angina and nice long lifespan predictions lumped together next to those with severely damaged heart muscle, barely 10% ejection fractions, and on heart transplant waiting lists who will not live long enough to see their donor hearts.
To have any in that first group advise a perky "Chill out!" to those in any other group would be equally troubling.
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