Two year anniversary reflection on my struggle to get diagnosed with cancer.
"Should I accept the answers provided by experts or follow the gut feeling I had that something was not right?"
I had never cried because of a spreadsheet before. Its name stared back at me: Residency Rank Thoughts. My tool for finalizing a rank list for the MATCH. Now I was forced to change it. Weeks before, the columns read prestige, fellowship match, location, and research opportunities. But now I added two new columns: quality of cancer center and proximity to people who could take care of me…just in case.
This was my new life. The new variables now dominated the seemingly antiquated preferences of my former self. The life I had been planning for four years had changed. I was devastated. As a budding physician, I was also deeply troubled by how unnecessarily hard it was for my cancer to be diagnosed. I am (was?) a healthy young woman, a never-smoker, and an avid runner. I was also, though, someone with signs of brain abnormality. After repeated misdiagnoses, I was finally diagnosed in the middle of my residency interviews with stage IV lung cancer with brain metastases.
Cancer, despite its virulence, begins as a stowaway. I first noticed signs of my unwanted passenger in the middle of my fourth year of medical school, a mere six months before graduation. At first, the signs were small, the kind you might ignore. Running beside the Mississippi River on a sunny fall day, the vision in my left eye narrowed and I began seeing zig-zag lines. Thinking I had overexerted myself, I sat on a bench facing the river to rest. My vision returned and I continued my run. Life kept going. A week later in the clinic, a nurse approached to present my next patient. As she spoke, I realized that I could not see her lower left leg in my periphery. Along with the visual deficit, I started experiencing frequent ocular migraines. Although I had a distant history of migraine headaches, these were new.
Apprehensive, I began to search for answers. My first stop was an eye clinic. The optometrist told me that my left eye astigmatism had worsened, causing me to suddenly notice a visual deficit. The optometrist didn’t seem worried, and I considered putting the matter to rest. Some friends and family members even advised me to let it go. But something about this diagnosis nagged at me. I confided in an attending one day who seemed alarmed. So I kept digging.
On to the ophthalmologist. Normal eye pressures and unremarkable optic nerves. The ophthalmologist said I suffered from persistent ocular migraines and suggested following up with my primary care physician if the symptoms continued. Despite my complaints about a visual deficit, no visual field test was done. The problem persisted.
Next, I called my primary care clinic only to be dismissed by a nurse before ever speaking to a doctor. I called two more times with the same result. Ultimately, I was able to secure an appointment by exaggerating my symptoms. I was hopeful that I would finally get an answer. And I did, to an extent. Your left eye astigmatism has gotten worse…change your lenses…try saline solution…the ocular migraines are probably a coincidence…no imaging needed.
I left the office feeling cheated. Why was an MRI not ordered? If I’m being honest, I was also embarrassed and frustrated with myself for not pushing harder. I knew that astigmatism plus a coincidence was not an answer to what had become a permanent visual deficit coupled with frequent and debilitating ocular migraines. I voiced this concern to my doctor, but in the end, I deferred. Maybe I did so out of respect for her years of experience in a field to which I was new. Maybe I wanted her to be right. Or maybe it was because deference is something you learn as a patient.
For me, this was the turning point. Should I accept the answers provided by experts or follow the gut feeling I had that something was not right? Many people find themselves at this crossroads. I do not know how others handle it. I was a fourth-year medical student, new to medicine but with enough wherewithal to be troubled by unsatisfying diagnoses and unordered tests. My roommates were medical students who were likewise unsettled by the lack of a brain scan or referral to neurology. My younger brother was a medical student and was dismayed at my inadequately explained vision loss. I was surrounded by seasoned physicians every day at the clinic who questioned my treatment. And I had read Paul Kalanithi’s book When Breath Becomes Air and vividly remembered how his cancer diagnosis was initially missed. I do not know what I would have done without the strong and numerous forces pushing me. But I still look back with terror that I could have just accepted what I was told. I could have just moved on. It would have been easy to do – I wanted so desperately for them to be right.
But I did not give up. I pushed. I went to urgent care where a physician’s assistant sent me to the emergency department at the very hospital where I would be interviewing for residency the following day. I planned to leave early enough to make it to the pre-interview dinner, but I never made it to that dinner. I missed the interview too, instead, I lay on a hospital bed. The answer was now in front of me. My brain MRI showed metastatic disease. I was diagnosed with stage IV lung cancer. What had been causing my visual deficit was not astigmatism. Instead, it was one of the four lesions that had spread to my brain. My treatment started soon thereafter.
I am not the typical case. I am not representative of the majority of patients. I am part of a significant minority of patients who do not present as the textbook case of their disease. We represent the difficulty of medicine.
In medicine, we have a finite time to spend with every patient. We are pushed to be efficient in an era of healthcare cost savings. We see hundreds of patients a year. This is not an easy task by any means. I know that it is often not possible to consider every diagnosis or run every test. But it should be possible when the pieces do not fit. When questions remain. When a patient repeatedly calls or returns to the clinic with the same complaints and without answers, or when significant uncertainty exists, we as healthcare providers are obligated to listen and dig deeper.
Most physicians would not expect me to be one. I did not expect to be one. But I am all the same. I know that some diagnoses will be missed. But if we seek answers rather than rely on assumptions, we will miss fewer.
Keep Advocating,
Alwiya Ahmed