When is a Little Knowledge a Good Thing?

In the summer of 2016 in seemingly good health, I was diagnosed with acute myeloid leukemia through a routine blood test and subsequent bone marrow biopsy.  In 48 hours, I went from a carefree existence to a week-long, 24/7 chemotherapy drip and a 5 ½ week hospital stay.

Although my doctors described my treatment plan, in retrospect it’s remarkable how little I learned about my disease.  This cancer is not “staged,” because it is so unpredictable, and there were no discussions of long-term prognosis, survival rates, or other such matters.  For my part, I made a conscious decision not to surf the internet collecting all sorts of dubious, unverifiable information about my disease.

Instead, I simply trusted my doctors as we moved through my initial treatment one step at a time: induction chemotherapy, temporary remission, infection management, count recovery, and emerging molecular and cytogenic data on my cancer.  Throughout this period, my doctors’ calm, professional demeanor provided reassurance that my disease was a problem they could solve.

It wasn’t until I was contemplating a stem cell transplant that I heard the first hard numbers and survival rates for consolidation chemotherapy versus a transplant. Even the best-case scenarios looked pretty grim, and it dawned on me that I was fortunate to have survived up to that point.

I proceeded to transplant, recovery and survival.  As I got better, I gradually learned even more about the lethality of my disease. I now believe that it was for the best that I did not initially know all the dire things I eventually came to learn about AML. As it was, I could maintain a more hopeful outlook over my many months of treatment.

I don’t claim that this path is appropriate for every patient or disease.  But I was struck to learn of some research on AML patients that is consistent with my story. In the webcast “Coping with the Emotional Side Effects of AML” (available at patientpower.info), Dr. Thomas LeBlanc reports on interview data from AML patients. Among the more striking findings is that the more accurately patients understood the likely outcomes of their disease, the more emotional distress and sadness they experienced.

I would never advocate that ignorance is bliss. But my experience — backed up by this exploratory research — suggests that just a little knowledge can be a good thing when it comes to surviving AML.

 

steve bSteve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

 

 

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3 thoughts on “When is a Little Knowledge a Good Thing?

  1. Sonali Dhir

    knowledge is always a good thing, however for all of us providers or as patients we must learn to discern false information and realistic evidence based information

    Reply
    1. Steve Buechler

      Here’s what complicates the issue. It is precisely “realistic evidence based information” that seems to prove so dispiriting to patients with AML. My point is that not knowing all the details about a pessimistic prognosis may be better for the patient than knowing it all in advance. Of course, patients should have all their questions answered, but in the absence of a request for detailed information about the probable course of a disease, the question remains: how much is “good” for patients to know and how should health care providers make this determination?

      Reply
      1. Sonali Dhir

        I believe that is sometimes why a family meeting is appropriate with patient’s close kin and the patient if we believe he or she is able to process the information without comprising their belief in current regimen. Like if they are doing well we should discuss it with family and healthcare professionals if it would be right to reveal ” bad news” about their prognosis at a certain time. I agree sometimes knowing too much may be cumbersome to keep up morale at times

        Reply

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