CLL patients are all familiar with Watch and Wait. It is a maddening distraction for someone who wants to do something. It is not aggressive, nor even proactive, but reactive.
This is despairing to anyone who wants to be assertive, take control, nip it in the bud, get it all behind them, move forward, take the bull by the horns, seize the initiative, and damn the torpedoes full speed ahead. Sometimes, things just don’t work out that way. Welcome to the world of CLL. But then, again, the world of CLL is not so different as many other things in our lives. Sometimes prudence requires that we act with haste. Other times, we hasten to do something when nothing might be better in the long run. It’s not always easy to get a grasp on the correct course of action, especially if no course of action is the best course of action; that runs counter to everything we know of ourselves.
I read this excellent article in THE NEW YORKER:
I remember reading the original article referred to, which pointed out dramatic differences in medical spending and outcomes between McAllen and El Paso, Texas. This article further elaborates. We do too much, spend too much, only to have the outcome be unchanged.
Whether you are a CLL patient or not, you are a medical services consumer. You want to get the most for your money, and the best medical care that can be had for someone else’s money. We always get back to that in the practice of modern medicine: How will we all spend someone else’s money?
I have had dozens and dozens of CT scans, none of which revealed anything that was not already known, except for the exact location of a kidney stone or two. It’s just too easy for our physicians to order CT Scans and MRIs when an ultrasound or a regular X-ray might serve just as well. We breathe easier when the expensive diagnostic tests reveal nothing, which means that the only thing that happened is money changed hands.
Surgeons nearly always recommend surgery first. Internists recommend medicine first. Physical Therapists recommend physical therapy first. This should not come as a surprise. To us CLL patients who have had W&W status prescribed, it is agony. But stop and think about it…it is an observation period. As long as your oncologist is recommending W&W, that means your CLL is progressing slowly enough that nothing needs to be done other than monitor its progress. While this may be exasperating, it is a good thing.
Upon exiting W&W status, one finds oneself at the stage of needing treatment. This brings with it a host of questions, to which the answer for any of them could have fatal consequences. What treatment? How will you respond? How will your disease respond? Will there be side effects [likely]? If so, how will you fare with them? Will you fall into the very small percentage that has the fatal or debilitating side effect? Remember, the 1% who do could just as well include you as the other 99%. Will the treatment you receive now bar you from other treatments in the future?
The answer to all these questions is freely available in hindsight. They are woefully absent up front, which is where all the decisions have to be made. For guidance, we rely on our oncologist/hematologist, and they may be so busy treating other types of cancers and blood diseases that they missed hearing about the very thing that might be most beneficial to us. That’s why it is good to have a CLL specialist in your arsenal of physicians since nothing about CLL escapes them.
Consequently, Watch & Wait is a good thing. Hopefully, one can live out the rest of their natural life in Watch & Wait, and never have to receive any treatment. This is possible, but not very likely for most of us. Watch & Wait will peter out on its own soon enough. Then it’ll be treatment time, which may or may not be effective, or may be effective but nevertheless fatal due to tumor-lysis syndrome, neutropenia, Richter’s Transformation, or any of a host of other things lurking out there beyond Watch & Wait. There’s always the chance that the treatment will be completely ineffective, too. Remember reading about that bunch in the fine print? You could just as easily be in their number as well as others. If you don’t think so, remember, you got CLL while most folks didn’t, didn’t you? Hmmmm! Watch & Wait seems less onerous now, doesn’t it?
Like the CLL they most likely found in you by accident (if you are like so many of us), all the CT scans and blood tests may reveal other things about your health that health care professionals will demand that they treat, which may be surgeries or medicines you actually do not need for potentially serious maladies that may or may not actually occur. That is why competent oncologists do not begin treatment based on a sole indicator in your blood work, nor on any unfavorable prognosticator (Unmutated IgVH, elevated ZAP-70, elevated β2m, 17p deletion). What are your symptoms? If your only symptom is an increasing WBC, then it can likely go much higher than you think it can. It can go on until you have symptoms because of its elevation. It is a prudent doctor who relies first on the “do no harm” part of Hippocratic medicine, which may include doing nothing at all beyond observing and monitoring. We rebel when we spend lots of mostly someone else’s money to get nothing in return but W&W.
You are the patient. Your physician makes recommendations which you need to test from time to time, simply by balking a bit. If your physician thinks what he is proposing is important, he will balk at your balk. He may even feel so strongly about what he is proposing that he says it might be best if you found another physician to treat you if you aren’t going to allow him to treat you the way he knows he should. This is a good sign that your physician sincerely feels an urgency about what he is proposing.
Your balk could also get a shrug of the shoulders and a comment of, “Well, it isn’t really necessary.” Personally, I want a fishing partner that is good at catching fish, not just fishing around for them with the latest and best equipment. I prefer the same in my medical team.
You are your own best advocate. You are also the steward of your health insurance resources, for others will use them without giving it a second thought.
After all that, W&W doesn’t seem so bad, does it?
You get used to it after a while, the W&W. Just remember, it sure beats any likely alternatives.
©2015 Mississippi Chris Sharp