Adopting a Patient Perspective
When Karin Charnoff-Katz, MD, was diagnosed with breast cancer, she entered the patient experience and left a changed physician
On my way to work as a general radiologist in Memphis, I detoured to stop for a routine screening mammogram. I was 41 and a few months late for my second annual screening.
I was not overly anxious. My white attending physician coat provided me with an illusory protective shield. I believed the coat granted me a special immunity of sorts. I did not even wait for an official read after the imaging, as I was in too much of a rush to get to work. It seemed at that phase of my life, I was always multi-tasking and perennially in a hurry. Between working, losing my mother and mother-in-law to ovarian cancer deaths at young ages, and having three small children at home, every moment was teeming with activity and responsibility. I often put on makeup in the mornings while stopped at red lights in my car. Maybe that explained my less than stellar driving record.
"Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick.
Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."
— Susan Sontag
As I passed through suburban Memphis neighborhoods on the way to my office, my cell phone rang. It was the senior attending at the spa-like breast imaging facility, asking me to return to her office for biopsies. I stopped the car suddenly, eyes brimming with tears. I pulled into a parking lot to be alone and process the news.
After a brief respite in the parking lot, I raced back to have the procedure done. I was not yet convinced I had cancer. I still felt perfectly healthy. And I had no family history, no known risk factors for breast cancer. At the office, the radiologist showed me a snowstorm of calcifications that riddled nearly my entire right breast. I am uncertain whether she demonstrated the findings to me because I was a colleague, a radiologist, and she wanted confirmation, or if this was her modus operandi. They were little white flurries, where on my baseline mammogram one year prior, there had been none. The white flecks of calcium were so extensive that a stereotactic biopsy was unnecessary. The radiologist explained that she could randomly, almost blindly, perform biopsies in all four quadrants and she was certain her specimens would yield calcifications. Later, when I reviewed my previous year's mammogram, I was awed by all the invisible, imperceptible changes that had occurred within my body as I went about my life.
The biopsies revealed extensive DCIS. I would have to undergo a mastectomy. I felt as though I was entering a new era in my life. As Jerzi Kozinski in The Painted Bird writes, "Disease enters a person when he (or she) least expects it. It might be sitting behind you in a cart, jump on your shoulders as you bend down to pick berries in the wall or crawl out of the water as you cross the river in a boat. Disease sneaks into the body invisibly, cunningly." I was now part of the kingdom of the sick, a place consumed with doctors' appointments, treatments, and uncertainty.
I scheduled a nine-hour surgery to hastily rid my body of the malignant cells. I lay awake at night haunted by the knowledge that the cancer inhabited part of my anatomy. On the morning of my surgery, the surgeon took a neon purple marker, one my daughter would have sketched with gleefully for hours, and drew bold Xs and arcs across my chest. It reminded me of a pirate map for a treasure hunt. Despite my status as a physician and my familiarity with the course of treatment, I was unprepared for the strange details of treatment that the care team considered routine. I was completely unprepared for waking up in the recovery room with six drains in place to remove copious amounts of fluid from my chest.
As I recovered from surgery, I was also surprised at how difficult the simplest movements became. Even sitting upright in bed, something I once took for granted, was no simple maneuver. I stared with horror into my wall-length bathroom mirror at my wounded chest as I belted the numerous drains to my waist before a morning shower so that they would not tug at the incision sites. Even raising my arms above my head to shampoo my hair was challenging. But the worst part was the interminable waiting for the final pathology.
At last the results arrived. I was so grateful that the pathology implied an excellent prognosis, and I began my gradual journey back to wellness. I marveled at how quickly a person travels from the kingdom of the well to the kingdom of the sick — and yet how slowly one transitions in reverse.
When I was blessed to be deemed in remission, I was in no hurry to return to work. In fact, I was in no rush in any realm of my life. I took poetry seminars and simply savored unmeasured time with my three amazing children and my supportive spouse. I seriously contemplated a major change in my professional trajectory. I could not, however, help but reflect on all the years of training I had invested in medicine. I eventually elected to do a fellowship in breast imaging at Cornell, where I had trained as a medical student over a decade earlier. A mammogram had saved my life, and I hoped to pay that early detection forward as a breast imager.
For the past 10 years, I have been working at Cornell's Women's Imaging Center, detecting and biopsying breast cancers. My patients are often anxious and ever so vulnerable, not knowing what their mammogram may reveal. "Vulnerable" comes from the Latin word "vulnus," which means to carry a wound gracefully. My goal, beyond the early detection of breast cancer, is to help my patients do precisely that, to carry their wounds gracefulyy. I try to be as present as I perceive they want me to be. If I am blessed to simply let another breast cancer survivor know that I see nothing suspicious on her follow-up mammogram, I am privileged to witness a smile of relief. I know what it's like to feel the lingering vulnerability dissipate for a moment. On the other hand, when I diagnose a new cancer, if I deem the setting appropriate, I may share with the patient that I too have had breast cancer. This connection can sometimes replace some of the fear with a sense of hope. When patients express disbelief at this news, what they are really saying is, "You mean one day I can be well again too?"
In the years since my recovery, I've found myself thanking God for my breast cancer. As a direct consequence of my illness, my career was refashioned and I now find more fulfillment in my work. I am undoubtedly still multitasking. However, I have learned that patience is key in my interactions with patients. I appreciate that each person comes from a different place. I've learned to modulate my response contingent upon the patient's particular needs and questions. When a patient is forced to enter the kingdom of the sick, my own experience with breast cancer facilitates my capacity, as a physician, to come along with them as their lives are forever changed.
By Karin Charnoff-Katz, MD, attending breast imaging radiologist at Cornell New York Hospital