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CML patient’s reflections prompt physician to rethink professional priorities
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As a fellow, I was asked by my then-division chief to see a young woman in consultation for leukocytosis.
He had come to know of her through a colleague and reasoned that my upcoming clinic was probably the quickest way for her to be seen.
That year, I had seen many patients with leukopenia, leukocytosis, anemia, thrombocytopenia or, sometimes, combinations of the above. Most didn’t harbor serious underlying hematological disorders, and many I met for one time only.
At first, this particular patient seemed no different. She was healthy and active, with just a modest neutrophilic elevation in her white blood cell count. Further questioning, though, revealed some subtle — and to her, not-so-subtle — historical symptoms, including unexplained fatigue, vague left-sided abdominal discomfort, and a feeling that something wasn’t quite right. She turned out to have a diagnosis of chronic myelogenous leukemia.
CML represents one of the great success stories in modern oncology. A once-invariably fatal disease has been transformed into a chronic illness, one that some individuals can experience entirely without symptoms. Mathematical models suggest a normal life expectancy for many.
As detailed in The Emperor of all Maladies: A Biography of Cancer by Siddhartha Mukherjee and many other accounts, this story of heroism reached its intellectual culmination in the development and testing of a miraculous new drug, imatinib (Gleevec, Novartis). This oral tyrosine kinase inhibitor, and its new second- and third-generation cousins, has revolutionized the treatment of patients with this disease.
The clinical care of these patients, on the surface, has become fairly straightforward. Many providers find that the more difficult decisions center on which TKI to start, how to monitor and characterize “success” by hematologic, cytogenetic and molecular milestones, and what to do if resistance develops. Many patients are managed on relative autopilot, though, once treatment is started.
Terrifying proposition for patient
From the patient’s perspective, the experience of being diagnosed with CML and starting a TKI, no matter how straightforward or successful this might seem from the provider’s standpoint, is a terrifying proposition. A cancer diagnosis — no matter which kind — is life-altering, especially to patients in their late 20s or early 30s.
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As I grew to know this patient over the years, we struggled with many important patient-centered issues. We talked about the biologic meaning of a CML diagnosis and what made a treatment such as imatinib successful. We discussed the confusing concept of how “curative” treatments in the past were fraught with morbidity and risk (eg, stem cell transplantation), while the miracle of imatinib did not mean “cure” — and that the disease, ever-lurking, would manifest itself once more if the medication were to be stopped.
In the early months, we dealt with side effects related to the drug, the most troublesome of which were myalgias and fluid retention, and side effects related to the new diagnosis of CML, particularly anxiety and insomnia. Hematologic remission came on time, as expected, and cytogenetic remission did as well.
More than 1 year later, though, the BCR-ABL transcript level “bumped” a bit, eventually leading to a series of tests and anxious conversations, including whether we should switch to another TKI. After considerable back and forth, my patient stayed on imatinib. Her transcript level again decreased, and she entered a complete molecular remission.
Throughout this time, we also talked about important life considerations, including concerns around starting a family, and the effect that her diagnosis and treatment might have on this.
Humbled and self-conscious
A few years have passed since I met this patient, and I recently was invited to a luncheon during which she publicly spoke about her experience. I was humbled and self-conscious as she described the effect that I had apparently made upon her care and her experience. Although I wasn’t always sure how much I had done, besides prescribing a miraculous drug that others had developed, she had remembered all of the office visits, phone calls and email conversations that we had from the time she first walked into my clinic with an elevated white blood count. I was particularly struck when she said that, no matter how busy I was, I always made her feel like she was my most important priority.
I admit that my most immediate reaction when I heard these words was guilt. Was she being too kind and overly generous? Was I still that way now, as my professional responsibilities had piled up in my first year-and-a-half on faculty? Did I act that way with all of my patients? Did this attitude guide my current interactions with all of the many people involved in our clinical care programs — our coordinators, nurses, extenders, pharmacists and social workers — whose daily requests for my time I struggled to balance with the nine or 10 other things competing for my attention at any given moment?
In the days since I was privileged to hear my patient’s speech, I have been thinking circumspectly about balance and priority in my professional life. I would like to think that my research program is important — that I might contribute in some way to our fund of knowledge in academic oncology, even if not as dramatically as the scientists who developed imatinib. In the end, though, imatinib is a success because of the way it has transformed the lives of our patients who take it, and the experiences of these patients with cancer must remain central to everything we do as academic oncologists. Why would we be in this business otherwise?
I have come to realize I owe my patient a great deal for her insightful words, which have caused me to take stock of where I am professionally. Each day I think of her as I shuffle what I do during the day so that my patients and their needs always come first. Sometimes, our patients are our greatest teachers.
William Wood, MD, is assistant professor of medicine in the division of hematology/oncology at the University of North Carolina in Chapel Hill. He may be reached at william_wood@ med.unc.edu.
Disclosure: Dr. Wood reports no relevant financial disclosures.