When the Patient Knows What the Doctor Does Not (Yet) Know

by Kimberly R. Myers and Julie Mack

Kimberly

Since I was in my twenties I knew I would be diagnosed with breast cancer. With no family history, no risk factors, no suspicious test results, and therefore no credible reason to anticipate this diagnosis, I nevertheless knew intuitively that I would get breast cancer. And I did.

As a teacher and scholar of medical humanities, I am usually thinking in some way about the nuances of patient-doctor relationships and communication. This professional awareness complicates my identity as a patient, especially because most of my physicians are also my colleagues and sometimes even close personal friends. The inevitable blurring of professional and personal boundaries is difficult for colleagues, whether patient or physician, particularly in the context of a serious diagnosis. What follows is an analytical reflection on the interplay of intuitive and empirical knowing, embedded in the stories of this patient and the radiologist who diagnosed her.

Physicians frequently advise patients, “Listen to your own body; you know it better than anyone.” In the actual clinical relationship, though, tensions exist between a patient’s intuitive knowledge and a physician’s empirical knowledge, and these tensions have very real ramifications. For instance, a central goal of communication in the clinic is that the patient be a “good historian,” reporting any and all information that might be relevant to her care. To facilitate this, the physician must cultivate an atmosphere of trust that enables the patient to divulge information that, while potentially embarrassing or awkward, could be critical to whole-person care.

Because of my premonition of breast cancer, over the years my perspective had progressed from sensible concern about breast health, to apprehensiveness about check-ups, to outright fright about anything to do with breast disease. I shuddered at scientific updates on epidemiology that I might encounter in professional journals; personal narratives by patients, or stories in film or television (frequent, given my work with pathographies and my general literature-and-medicine focus); reports on emerging diagnostic or treatment modalities featured on nightly news broadcasts ... and certainly the imperative for breast self-exams. Indeed, I finally decided that the burden of stress I experienced once a month at the time of my self-exam outweighed the benefit of potentially discovering a mass early, so I carefully orchestrated annual mammograms and gynecology visits so they would fall roughly six months apart. At least, I reasoned, something or someone (other than me) would be monitoring my body twice a year “before anything might have time to get out of control.”

Upon my move from teaching literature in a university to teaching in a college of medicine known for its humanities program, I figured it might be wise to confide in my PCP just how dramatically this darkening intuition—and the snowballing anxiety that ensued—was affecting my life. This plan seemed decidedly auspicious since my newly-minted internist was a graduate of a program with a strong emphasis on medical humanities and biomedical ethics, and I was one of her first post-residency patients. And after all, over the course of five or six visits in three years, she had always been attentive to the concrete information I had given her. Like any other well-trained physician, she presumably felt empowered to do something, to act. When I first reported persistent pain in my left breast, for instance, she ordered a diagnostic mammogram. It was normal. So was the next one, a year later. So were the three exams she performed on me, for that matter. But the pain persisted, and my sense of foreboding intensified.

“So what does this mean?” I constantly tried to divine, to analyze. Am I imagining things? Am I creating things? Is this well-founded intuition or is it some sort of perverse self-fulfilling prophecy? Is it an example of what my well-meaning but woefully oblivious walking buddy said, “You attract what you fear”? (Well, that’s great.) When medical tests don’t validate strong intuition, at what point—and to what extent—does the intuitive patient begin to doubt herself and her perception of her symptoms, especially if her intuition has proved remarkably accurate throughout her life? This is doubly confounding for highly analytical, self-reflective people, and poses an even greater quandary for those who work in health care settings and repeatedly hear frustration and exasperation regarding patients who appear to be malingering.

Not wanting to become a “problem patient” whose symptoms are dismissed by a doctor,
I tried to dismiss my own symptoms and make an uneasy peace with constant cognitive dissonance. “This breast pain must just be a fluke,” I repeat in my head, day by day, moment by moment. “Nothing is palpable and nothing is visible on the films.” From this vantage point—theoretically mirroring that of any frustrated physician who has dutifully followed up with all the right tests—a vigilant patient’s wisdom in “listening to her own body” slowly morphs into shame that she “imagines things.” Intuition has become hypochondria, she fears.

Given that patients want and need to be taken seriously, the stakes are high when discussing non-empirical phenomena—even higher, perhaps, when one’s doctor is also a colleague. What if the patient is dismissed as neurotic by the very person left to care for her? Fearing that talking about her intuition might affect her physician’s opinion of and behavior toward her, to what extent should the patient script a calculated discussion in order to minimize the possibility of dismissiveness or even abandonment? Surely these uncertainties themselves contribute to stress, which is implicated as a contributing factor in a host of disease processes, including breast cancer.

Entangled in this web of concerns, I furtively googled the most clinically detached description I could think of to describe what I was experiencing: “health anxiety.” To my surprise, this search yielded links to the DSM, where I found this condition a “legitimate” diagnosis. Armed with official diagnostic language other than the alternative—and more culturally freighted—term “hypochondriasis,” I could come clean with my internist. Perhaps she would respect my dispassionate, straightforward tone as an indication of healthy self-awareness. I would report this information as matter-of-factly as I would present a patient on morning rounds if I were a physician. I had my approach.

Initially, my internist seemed sympathetic to my situation and supported my plan to have mammograms in January and breast exams with her in July. I was gratified that I had withheld the darkest manifestations of my anxiety—she need not know every macabre detail—so that I still had some credibility in the clinical setting. That is, not everything I reported would be disregarded as merely “imagination,” a word some use interchangeably with “intuition.” This was July, and as usual she found nothing during the physical exam. Six months of respite before the onslaught of anxiety surrounding the next imaging test—which was, again, normal. When I saw her in clinic the following July, she asked why I was there, seemingly forgetting our six-months-from-mammogram-to-office-visit plan. When I reminded her, she seemed reluctant to follow through with the breast physical exam and said that in the future she would perform only the tests that were medically indicated, not every test I simply thought I should have. Her tone was condescending and paternalistic, as if she refused to cater to the whims of a hypochondriac and that we needed a little rational rationing to remind us what was what—and who was who. I felt shamed by her.

Assumptions were made and trust was shattered. No longer having an ally and now doubly closeted in my apprehensiveness, I walked into the breast imaging center the following January with an even greater sense of dread than usual. Getting ready that morning, a horde of scenarios careened through my mind: “The next time I make this bed, my whole world could be in shambles”; “When I look into this bathroom mirror again, I could see Cancer Patient”; “This might be the last time I enjoy a cup of coffee without worrying about a tumor in my breast.” It went on and on. The morning was cold and rainy. Not a good omen, I thought.

Julie

I wandered down the hallway and looked for the technologist whom I would be working with on my next case. My eyes drifted to the diagnostic waiting room where a face sat perched above a crouched body, shrouded in one of our gowns. The eyes were familiar but the expression was not; the last time I had seen her, I read energetic curiosity in her face. Today her fear confused me.

I walked into the room and spoke her name as a question: “Kimberly?” She looked up at me, her frame looking fragile in a gown, not the woman I remembered. There were others in the waiting room, so I motioned her to the hallway. I asked if she was okay, immediately presuming she was “called back” due to a possible abnormality on her screening test, or that she was there to have a new symptom investigated.

She said, “No, I wasn’t called back.”

My eyes must have registered confusion. She was in our diagnostic waiting room.


“The left-breast pain I had a couple of years ago has come back.” She wrapped her gown closer and apologized. “I’m sorry, this is just a hard test for me. It always has been. I haven’t been sleeping.”

She does not want to wait for results by phone or by letter. She wants to know now.


I touch her arm, hoping to comfort.“Would you like me to read your study?” For a moment, I see relief in her face and she smiles. “Yes, would you?”

I walk back down the hall and I am unsettled by her fear. The last time I had seen her, she wasn’t a patient. She was a professor of literature, energetic, my husband’s mentor. Last time she wore a bright jacket, her shoulders broad, and her arms open and waving. The eyes I remembered radiated enthusiasm as she presided over the awards ceremony for submissions to the literary magazine she edited.

I ask one of the technologists to bring the films on Dr. Myers to me when the study is complete. I re-enter the dark reading room and continue on with my daily work. A little later, the technologist returns. The 4-view standard images are ready.

My eyes register heterogeneously dense breasts, a mix of greys and whites. A three-dimensional structure flattened into two dimensions. A border catches my eye. “Probably overlap,” I tell the technologist. “Can you just take another spot there?” I know this will produce more fear in my patient, but I plan to give her the good news when it is all done. I walk down the hall to let her know that I want an additional image. Overlap of tissue can produce all sorts of odd forms, and another picture will sort it out. She is alone this time in the waiting room, and I am standing. I briefly review what I need. I expect nervousness. The response is panic.

“What did you find? Do you see something?”

Her eyes are wide, her shoulders small. I sit down next to her and begin a longer explanation. “You have dense breast tissue; overlap of tissue can produce odd shadows on the film. I’m just being careful. If the additional views are normal, we’ll be done.”

“What if they’re not normal? What does that mean?”

Her eyes are wider, her mouth open. I attempt again to calm her. The technologist moves in and takes her into the exam room for the additional views.

The spot view comes back, and I stare at the area. The technologist waits. Was I letting my 21 nerves get the better of me? Had my patient’s fear become mine? I walk down the hall for a second
opinion from a trusted colleague.

“I know her. She’s nervous. Am I overcalling this?”


“Yes.”


I pause briefly and contemplate stopping the exam without pursuing additional imaging. But doing nothing feels worse than pursuing the hint of a shadow on the mammogram. I confess to the technologist, “I’m doing this as much to calm my nerves as hers. Humor me and let’s put her in ultrasound.”

I will feel more confident if I can clear her breast by sonography. But first I have to talk to her again. I take a breath and walk down the hall.

I look again into her fear, and try to explain what an ultrasound can do—that we often see cysts in patients with dense breast tissue.

“Does a cyst indicate malignancy?”


“No, a cyst is just fluid within the normal spectrum of breast physiology.”


“Does that predispose me to cancer?”


I try again to comfort, explaining that sonography is just another way to look at the breast.

I do not discuss the data on dense breast tissue and elevated cancer risk. I haven’t calmed her down, and her anxiety level disorients me. I explain that we have to contact her physician, as we can’t move ahead with additional testing until we have a written order. It will require that she wait. Would she like to come back later? It was a silly question.

I walk by the waiting room several more times on my way to see other patients. It is not typical for me to pay attention to this room, but today I do.

She is reading.


She is tapping.


She is staring.

I call her doctor directly for the order, bypassing the front desk. I can’t wait any longer.

The technologist moves her into the ultrasound room and types her data into the machine.

I enter the dark room and see she is quiet, staring at the ceiling, her agitation diminished. I am calm, comfortable in this room with a probe in my hand. I move her gown down and drape a towel over her breast, leaving a portion uncovered. I squirt warm gel on the probe, and place it on her skin. Scattered islands of white glandular tissue separated by bands of grey fatty breast tissue fill the screen, and I am relieved. Her breast tissue is easy to scan, smooth transitions between white and grey, with only inconsistent shadowing from the supporting ligaments. I move the probe down and slightly toward the middle, and an aberration appears on the screen. It is against her chest wall, a small dark splotch, interrupting the normal contour of the tissue. I move the probe away, turn it slightly, and move it back to the area. The splotch persists. I quietly speak to the technologist, “Mark this radial 9:00, 2 cm from the nipple.” I make an initial measurement. My patient has turned her gaze from the ceiling. She is staring directly at me, and now her fear is familiar; it makes sense to me, something I witness in most emotionally healthy patients when I find something that needs biopsy.

“What is it? Is it a cyst?"


I lift the probe off her skin.


“No, it is not a cyst.”


I pause, and phrase my next sentence carefully.


“Kimberly, I don’t like the way it looks.”

I realize I haven’t used many words before she grasps the import of what is going on. More words about what it looks like will not help her understand it anymore than she already does.
Her face contorts, her eyes squeeze tight, and she breathes too fast.
I put the probe down, pause, and touch her arm again. I begin the next discussion, a transition to another test. It is the biopsy procedure I later learn she has long been expecting.

REFLECTIONS

Julie

I have replayed that day in my mind many times, wondering why I moved to sonography in this patient on that day. I had sought a second opinion from a trusted colleague, but even before she had given her opinion that a sonogram was probably not warranted, I had decided to pursue the additional test. On 22 another day, the same findings might not have crossed my threshold of “abnormal” and I, too, would have passed the study as negative. After all, there’s no certainty when examining shadows on films for patterns of disease, especially in patients with dense breasts. This is a truth that all radiologists understand and must learn to live with. Nonetheless, on that day, I could not even come to a relative certainty. Sensing that something was off-kilter in Kimberly—even though I could not pinpoint it precisely—caused my mirror neurons to fire early and repeatedly, and my adrenaline to rise. Perhaps this synergistic connection and subsequent physiological response enhanced my perception of the subtle finding on the film. Perhaps I just feared missing an important finding. Whatever the process, Kimberly and I now shared the same fear. Something was wrong; something sinister eluded detection.

I sat with Kimberly a few days later as she was waiting for her MRI exam. She looked tired now, but she was calm. We talked a bit about what had happened that day. Remarkably, despite the circumstances of a new cancer diagnosis, she expressed gratitude. She told me she was glad that I had been there that day and that I had moved ahead with additional testing. I too was thankful. Had I not seen Kimberly in the waiting room and connected with her on a subconscious level, I might have seen only dense tissue on her mammogram and missed the early finding that could make a difference in her long-term prognosis.

Kimberly

At some later point in my treatment, Julie asked me whether there was any period of time between her discovering the mass and my receiving the pathology results that I had convinced myself it wasn’t cancer. No—not only because Julie is a well-trained, gifted radiologist with years of experience, but also because I immediately recognized this finding as the thing I had known was coming all along. And while I was devastated by the findings, in a curious way it was also something of a relief to finally receive the diagnosis. Perhaps it was because there was no more relentless cognitive dissonance. Or perhaps it was a vindication of sorts that wiped away the awkwardness and distress I had come to feel about knowing something doctors did not yet know.

That said, here’s the rub: the mass was in my right breast, not the left where I had felt pain. Although breast cancer is rarely painful, and breast pain is common, my recurring left-breast pain is what warranted a “diagnostic” mammogram (as opposed to a “screening” mammogram); and being in the diagnostic room is what led Julie to see me. In a way, intuition had found a voice considered legitimate in the clinical setting; pain had done its work by triggering the cascade of events that unfolded. What’s more, after the initial stages of diagnosis, the pestilential anxiety that had hounded me for decades receded into near quietness.

Though this essay most directly addresses the interplay of intuitive and empirical knowing, it also touches on another way of knowing: knowing people in multiple ways. For example, in the thick of trying to process my diagnosis and the white-hot shock that followed from it, I was also very concerned about Julie. I kept thinking how utterly awful this liminal position must be for her: to have to give this news to a friend, to be saddled with the weight of her professional responsibilities in an otherwise personal relationship. In short, I felt remorse for having (inadvertently, to be sure) put a colleague and friend in this difficult position.

Indeed, writing this essay was itself difficult because it took us out of carefully prescribed professional roles and into murky territory of multiple and simultaneous ways of knowing each other. But it was also wonderfully cathartic and illuminating; in exploring the acts of speaking and listening in a clinical setting we discovered that we recalled the same events, but we remembered the language quite differently. Because the word “cancer” has long been taboo for me when I have been in the position of patient in a clinic, I’m certain that I would never have asked Julie outright if “this is cancer.” I would have used all sorts of circumlocutions and euphemisms, as are generally reflected in this essay. But when Julie recounted her memory of that day, she remembered my initial response to her request for extra mammographic views as “Do I have cancer?” It was what I was thinking, and it was what she “heard,” but I’m sure those words were never spoken.

The richness of these insights leads us to believe that similar collaboration between patients and physicians would be quite fruitful, fostering better communication and deeper trust, and therefore ultimately more effective clinical relationships. We also believe that, based on the experience we describe here, clinicians should respect intuition—their own and their patients’—even when empirical tests contradict it. Doing so just might save someone’s life.

Kimberly Myers is a literary scholar, editor and teacher with a special interest in illness narratives. She is currently associate professor in the Department of Humanities at Penn State College of Medicine, with a joint appointment in the Department of English at Penn State University. krm16@psu.edu

Julie Mack is a radiologist with a special interest in breast imaging, and the correlation of imaging findings with pathologic findings in a wide variety of diseases. She currently practices as a member of the breast imaging team at Penn State Hershey Breast Center. jmack@hmc.psu.edu

Atrium issue 11

Originally appeared in Atrium Issue 11: Knowing (Or Not) (Winter 2013)

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