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Patients' Corner

Knowledge Is Power

Date: October 2, 2003

by John Balan

In the Treatment of CLL, Your Role Is Important

Editor's Note: The opinions expressed here are those of the author(s).
CLL Topics does not necessarily share or endorse these opinions.

I recently had dinner with my internist, who has become a good friend over the years. Walking to a restaurant with our wives, the conversation split into two parts, and he and I were “talking shop”, about patients.

He was distressed by how patients come to his office totally “medically ignorant”. Although, he said, it was easier and less time consuming to deal with such patients, it was also more frustrating. He did not feel that he was doing the best he could for these people, primarily because of the lack of communication, and also due to the lack of understanding on the patients’ part.

Now it may be that some physicians prefer the less informed patient. No one these days schedules less than four patients an hour (every fifteen minutes), and many busy doctors schedule ten-minute sessions, six patients each hour. I believe it is not possible to read a patient’s chart to refresh your memory, examine the patient, probe and ask questions, take a few minutes to investigate further, and determine a course of action in ten minutes. Hence the preference for the uninformed patient; there need be less dialog, and the session goes faster.

Leukemia and lymphoma are one of three cancers that have increasing rates of incidence over the past several years. The other two are melanoma (we are increasingly careless about sun exposure during these environmentally questionable times) and brain cancer. The major cancers (breast, colon, prostate) have received so much attention during past years that the rates of incidence have actually decreased. CLL is a nasty disease. It manifests differently with each patient, reacts differently to treatments depending on the individual, mutates, and is unpredictable. Much that is being done with CLL is empirical, in other words, solely based on bits and pieces of previous experience. If A works better than B, lets go with A …

The other, good side of this coin is that the rate of investigation of blood cancers has grown, and that the choice of treatments and their efficacy has vastly increased in the last several years. This, however, has led to a proliferation of treatment approaches, clinical trials, medications, and even basic philosophies of how to handle these cancers.

Many oncologists are fully up-to-date with all of this material. In my personal experience (diagnosed in 1997, treated in 1999-2000) I deal with four oncologists, and at times of crisis consult with all of them. I am fortunate because, living in a major metropolitan area, there is access to top specialists. This is not to say that an oncologist practicing in a smaller town cannot be equally competent; quite the contrary. But, given the deluge of brand new material, many oncologists, especially if they are not  hematologists, may not have the experience with or exposure to the latest approaches to form a definitive opinion on desired treatments.

The point here is not that such a doctor would prescribe a “bad” approach. But, if you go to three others, you may get three different approaches. And who is to know which approach is the medically correct one for you? Take just a few quick examples:

  1. When and whether to begin treatment?
  2. To transplant or not to transplant?
  3. Use classical chemotherapies, or go with monoclonals?
  4. How intensive should the treatment be, considering the patient’s age?
  5. To enter or not to enter a clinical trial, i.e., whether to wait for a treatment to become available outside of a clinical trial?
  6. To go with an ongoing maintenance treatment, or not to do so?

And many, many other issues …

And here we come to point of this short article. In a situation like ours, where we are afflicted with a disease growing in frequency of incidence, which in turn has led to a proliferation of medical research and information, it is incumbent on us, the patients, to be as well informed as possible. If you have bronchitis, it is all well and good to stumble into a doctor’s office, take his prescription, and do what he or she says. Not so in our highly complicated situation …

There is a wealth of information on leukemia, its history, treatments, new developments, future promising therapies and results from approaches currently being tried, available to any interested person. There are web pages, discussion groups, educational seminars, private patient chat sessions, and the like available to all. It is absolutely incumbent on the patient to become as well informed as possible, and then to actively seek out an oncologist (or two) who will allow a dialog. If your doctor is a dictator, feels that only his/her thinking is correct, and will not allow you to express an opinion or ask a question, in my opinion you are in the wrong place.

In my case, I even managed to have a hand in designing the specific details of the treatment I had nearly four years ago. After all, your life is worth more than a hurried ten-minute appointment, with no discussion …

It may be, especially for some older patients, that we simply cannot or will not mount the effort to become better informed, After all, we have spent our entire lives in the belief that the doctor is best informed, infallible, and to be trusted blindly. As I said before, this is fine for bronchitis. But we are in a state-of-the-art, cutting edge situation here. If you do not wish to take the trouble yourself, appoint a relative to be your eyes and ears. There are many cases known to me where a son or daughter undertakes the task of being the “informed” person in the family, and in some cases this may indeed be the answer to the situation.

Remember, knowledge is power. Your doctor will appreciate a “hands on” approach on your part, and you will prolong your life by taking an active role in the course of your treatment. Inform yourself as much as possible, be politely challenging, and work with the doctor.

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