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A Patient Care App Diagnosed Me With Cancer

— No one should receive a serious diagnosis this way -- not even a doctor like myself

Ƶ MedicalToday
A young woman reacts with shock and dismay at what she’s seeing on her laptop.

I was feeling confident. I had just matched into a competitive fellowship and was nearing the completion of my chief resident year. Finally, the culmination of a decade's worth of medical training was approaching. As work commitments eased and with an upcoming move out of state, I had the nagging feeling I should schedule the appointment I'd put off repeatedly with my own doctor.

At my appointment, our conversation focused on my desire to freeze my eggs before fellowship, and almost as an afterthought, I mentioned a small growth in my left breast that seemed more noticeable over the last few months. It wasn't a big deal though -- I had a history of fibrocystic breast changes, and I had no family history of breast cancer. Above all, I was in my 30s. I asked for a breast ultrasound, just to be sure. Nearly two months later, I was scheduled for an ultrasound appointment in the nearby outpatient center of the hospital where I'd recently completed my training.

In the darkness of the exam room I thought it was a little odd the ultrasonographer was taking so long to finish the procedure. I tried not to feel put off when she quietly left the room with a puzzled look on her face. When she returned 20 minutes later with the radiologist, the radiologist silently picked up the ultrasound probe and placed it on my chest, and after several minutes, she finally stated she was concerned the shadowy, irregular mass on the ultrasound was a cancer. I would need a biopsy to be sure, she said with a serious face, and she would be happy to arrange a consult with a breast surgeon to expedite the process. I was still waiting on her introduction.

One biopsy later, my cell phone buzzed with the notification of a new result in my patient health app. I ignored it as I was finishing my patient obligations in the hospital. Later that night, I saw the notification and reassured myself that since I hadn't heard from the provider who performed my biopsy, it had to be fine; just a boring, normal result.

I logged into the patient chart app and navigated to the results section and saw "POSITIVE BIOPSY -- INVASIVE DUCTAL CARCINOMA, ER+ PR+ HER2 negative, provider notified."

I was beyond shocked. Could this be a mistake? What did it mean? I needed to put a plan together with my doctor! I didn't have time to wait, especially if I had a career opportunity on the horizon.

After several calls to the office of the surgeon who performed my biopsy, she finally called me back -- three days later. "We'll discuss it at your next appointment in two weeks, and in the meantime I'll order more imaging to see if the cancer has spread anywhere, just try not to worry about it."

Was she kidding? My idea of good health was now shattered with the diagnosis of a serious medical illness, and the medical profession that I had dedicated so much of myself to over the last decade was also turning its back on me. The thought of having a metastatic cancer was beyond what I was capable of accepting.

Over the next 2 weeks, I found ways to be proactive. I froze my eggs to keep alive my dream of biological children, and I went to PubMed to find the latest research on breast cancer -- clearly I was going to be my best advocate. I soon completed the metastatic workup my provider ordered after our phone call, and 72 hours later, my cell phone buzzed again with a familiar notification: I had new results in my patient care app. Again, no non-electronic updates from my provider or her office.

I opened the app and when I looked at the report of the CT-chest scan in my patient chart, I gasped. Seven to eight lung nodules that were "potentially compatible with metastasis" had been identified between both lungs. Things felt hopeless.

My follow up appointment with my doctor was early the following week, but when I again received no call to discuss my results, I'd had enough. I was not giving up my life for a disease, and anyone who would not meet me halfway to help me accomplish that goal was not the provider for me.

I transferred to a different provider in a different practice, who saw me immediately, scheduled a lung biopsy to determine if the nodules in my lungs were in fact metastasis. When that result returned positive, he called me immediately and spent an hour explaining the process of initiating treatment and emphasizing reasons to feel optimistic -- I was young, had an overall low burden of disease, the tumor was not aggressive, and there were good early results with therapies to treat my tumor type.

I deferred fellowship for a year to be sure I'd respond well to treatment. Thankfully, I did. In the remaining time before my deferred fellowship entrance began, I took a job as a hospitalist. I desperately sought to put the events of the past year behind me and focused on the joy I was again slowly finding in being a physician again.

As medical providers, we are constantly crushed under a heavy load of administrative requirements in addition to our regular patient care duties. But the convenience of 24/7 patient lab result access and the automatic release of patient results should not take the place of quality care. Every patient deserves to have a biopsy result with serious consequences put into an appropriate context during a timely discussion with their physician.

My early experiences as a patient with a serious medical diagnosis were devastating. Though I had the medical training to understand the consequence of the results before discussing with my provider, the personal impact of a cancer diagnosis was -- and still is -- terrifying. I'm now determined to never leave my own patients with looming concerns about their health.

Each time I deliver a diagnosis of a serious medical diagnosis -- such as cancer -- to my patients, I choose my words carefully and thoughtfully, always finding ways to give each patient a realistic amount of hope alongside all the information I can offer. Kindness and empathy are not a substitute for treatment, but it is always a meaningful use of any provider's time to ease a patient's concerns, and to assure them they are not alone.

is a cardiology fellow at the University of South Florida.