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As a doctor, I’m used to providing medical care, but once I was diagnosed with cancer, I became a patient — someone receiving medical care, too.
I am a physician. Recently, I shared with a close friend that I was making a career change to a position with fewer clinical responsibilities. Her response was mixed: both congratulatory for me and concern for the patients I serve because she knows that I take pride in providing high quality medical care and fostering a good physician-patient relationship.
As I listened to her, I realized the reason for my clinical approach: my extensive personal experience as a patient.
Surgeons removed a large gastrointestinal stromal tumor (GIST) from my stomach when I was a third-year medical student. Based on the knowledge of GIST at that time and the surgical pathology, I was told the tumor was not cancer but required annual endoscopy to assess for recurrence.
Despite the recommendation for ongoing surveillance, I did not identify as a patient. During surgical recovery, I eagerly awaited clearance to resume my education to give, not receive, medical care. As a medical student I learned that to become a great physician, along with the basic sciences, I had to learn the art of relating to patients and the importance of compassion in the physician-patient relationship.
For example, when standardized patients received or shared bad news, I was taught to respond with phrases like, “I am so sorry.” As a practicing physician, I applied the lessons that I learned and always knew the “right” response to comfort patients. However, I did not personally relate to the patient experience.
Less than two years after the resection of the tumor, I graduated medical school, and aside from my annual primary care and endoscopy assessments, my primary identity in the medical system was that of a physician not a patient.
Soon, my identity would expand.
During residency training, I was diagnosed with stage 4 cancer; the GIST had metastasized to my liver. Scientific advances since my initial diagnosis seven years prior had led to the reclassification of GIST as cancer. Most of the metastatic GIST lesions were surgically removed or treated with radiofrequency ablation. Similar to the first surgical recovery, after the second surgery, I eagerly awaited clearance to return to training.
In contrast, the postoperative surveillance and treatment recommendations for the cancer exceeded the annual endoscopic surveillance for the tumor. After the stage 4 GIST diagnosis, seemingly overnight, my encounters in the medical system increased exponentially. And, although I remained a physician, I could not deny that I was also a patient.
I have a wildtype GIST. It is very rare and has no approved systemic therapy treatment. Many patients with wildtype GIST undergo multiple surgeries throughout their lives to remove tumors. Thankfully, the slow growth of residual metastatic GIST lesions in my liver and my willingness to take systemic therapies approved for other GIST mutations have prevented the need for additional surgeries.
But the off-label systemic therapy use with frequent imaging surveillance has not been uneventful. For example, I developed a rash and lower extremity edema with one therapy. Another caused hand-foot-skin reaction that affected my ability to stand or walk for prolonged duration. The significant pain in my feet required that I change in my daily exercise regimen to strictly chair exercise, trade my black work clogs for black tennis shoes with extra padding, and accept logging fewer than 10,000 steps daily. When I developed alopecia, I shaved my hair and donned a hair prosthesis.
Despite the difficulties I experience as a patient, I continue my clinical responsibilities. I enjoy celebrating with patients who implement the lifestyle modifications we discuss and demonstrate improved chronic disease management, fewer daily cigarettes or weight loss and encouraging patients who report barriers to reaching their goals.
As a physician and patient, the “right” response to comfort other patients has become much more than a phrase, it is showing genuine compassion and empathy based on our shared experiences. The shared experience also allows me to advocate for patients among clinical leaders. When participating in the shared decision-making process with patients my perspective includes my personal experience of arranging my schedule to have regular GIST imaging, suddenly feeling anxious a few days before imaging studies until I have results, the direct and indirect costs of my medical care, and the physician-patient relationship I have with my oncologist.
My relationship with the different oncologists managing my care over time has been one of mutual respect. Although I am a physician, I am their patient. Oncology is not my specialty, so I depend on my oncologist for guidance in wildtype GIST management. Requiring specialty care helps me to understand how vulnerable many patients with no medical training must feel. I remember this feeling as my patient’s and I work together to build a trusting physician-patient relationship.
I am a physician and a patient with cancer. Cancer helped me acknowledge and appreciate my dual identity.
This post was written and submitted by DW. The article reflects the views of DW and not of CURE®. This is also not supposed to be intended as medical advice.
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