A year and a half ago, when I was 33, the thought of having a life-threatening disease was unimaginable. In hindsight, the weight loss I began experiencing in the fall of 2017 should have raised concern because I’ve always had to be mindful of my diet if I wanted to lose weight. But denial can be a powerful force, and the drop in my weight, 25 pounds over several weeks, was explained away in my mind by my increased physical activity running after my energetic toddler and shuttling between the medical campuses where I work.
Even now, I can’t adequately express my deep gratitude and good fortune to have access to such high-quality cancer care.— Adam P. Stern, MD
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Still, the weight loss was a reminder that I had not had a physical checkup in a long time, so I made an appointment to see my primary care physician. However, 3 days before my scheduled appointment, I had gross hematuria and flank pain, which to me signaled the possibility of a kidney stone. In reality, the trifecta of symptoms I was experiencing—rapid weight loss, night sweats, and blood in my urine—signaled a much more serious illness, and I moved up my doctor’s appointment to the next day.
That evening, my wife, who is also a physician, and I stayed up late waiting for my test results to be posted on the hospital’s Patient Gateway server, and each laboratory result was unlike anything I had ever experienced before. I was anemic, and my protein, albumin, neutrophil, and lymphocyte levels were off the charts. Nonspecific inflammatory markers, including C-reactive protein and erythrocyte sedimentation rate, were more elevated than I ever remember seeing them in my medical training.
Although in my psychiatry practice I rarely have to prescribe the type of blood tests I had just undergone, I knew the results I was seeing were not good.
Getting the Diagnosis
My wife and I started running a differential diagnosis on the possible disorders that could be causing my symptoms. To be honest, even though renal cell carcinoma rose pretty high on the list, I still discounted it because I knew that most people diagnosed with this cancer are between the ages of 50 and 70. So, I was still expecting to hear that my symptoms and test results signified a disorder much more benign than cancer. Again, denial can be a powerful force.
But in the end, Occam’s razor, indicating that the simplest explanations are more likely to be correct than complex ones, held true. The following day, a computed tomography (CT) scan of my urinary tract found a 10-cm tumor on my left kidney. Prior to the formal read, I had requested a copy of the images on a disk and immediately put them into a computer at work. I didn’t need a medical degree to diagnose what I was seeing on the screen. A call later that day from my primary care physician confirmed my worst fear.
Based on the imaging test, my physician said, I had a tumor thrombus in my left renal vein, and it was invading the local perinephric fat, which meant I most likely had stage III renal cell carcinoma. The encouraging news was that stage III was still potentially curable with a nephrectomy, and I held onto that possibility.
The call came on my cell phone while I was getting into my car to pick up my son from daycare. It’s still hard for me to talk about how devastating that moment felt. Knowing that the world was shattering around me, but not yet disclosing the news to my loved ones was a weight like no other I’ve ever felt.
Being the Beneficiary of Extraordinary Care
The day of my diagnosis was bookended by the extreme emotions of fear and hope. That night, at around 10:00 PM, I received a call from Toni Choueiri, MD, Director of the Lank Center for Genitourinary Oncology at Dana-Farber Cancer Institute/Brigham and Women’s Hospital, who talked with me about treatment options. He referred me to Steven Lee Chang, MD, MS, Assistant Professor at Harvard Medical School, for the nephrectomy and assured me that he was going to be with me every step of the way and would help take care of me. Even now, I can’t adequately express my deep gratitude and good fortune to have access to such high-quality cancer care. I know the same isn’t true for all patients with cancer.
I have certainly benefited from being a physician in one of the most prestigious medical schools in the country, but I wish everyone could have access to this ideal level of care.
Coming to Terms With My Diagnosis
Within a week of my diagnosis, I underwent surgery. A preoperative imaging scan of my body found several tiny nodules in my lungs. Although they were concerning, we decided to proceed under the assumption that the cancer had not traveled to distant sites. The pathology report of the tumor held more ominous news. The tumor had rhabdoid features and a high degree of programmed cell death protein 1 expression, establishing it as a highly aggressive form of renal cell carcinoma, and I knew that my chances of recurrence were at least 50%.
My oncologist recommended a course of pembrolizumab, which was being investigated in clinical trials to prevent renal cell cancer recurrence. I don’t know for sure, but I suspect that the treatment was helpful not in preventing a recurrence, but in slowing the cancer from progressing.
In November 2018, an imaging scan showed a new lung nodule, still small, but making it unlikely that the cancer had not already spread to my lungs. In January, I underwent video-assisted thoracic surgery to remove four small wedges of tissue containing nodules on my right lung—because only one lung can be worked on at a time, the nodules on my left lung were left untouched—and two lymph nodes. Although the lymph nodes were negative for cancer, the nodules, including the earlier ones spotted on a CT scan, were positive for renal cell carcinoma. It turns out that I had stage IV cancer all along.
Since the surgery, my oncologist added ipilimumab to my treatment with pembrolizumab. We’ll see if this immunotherapy combination can keep my cancer under control, hopefully, for a long time. The more I can slow down disease progression, the better my prognosis will be over the long term, both statistically and because the field is racing forward with advances.
Adapting to Cancer
Although being diagnosed with cancer has given me greater empathy for and understanding of the anxiety my patients struggling with chronic illness go through, possibly making me a better physician, those same medical skills do not work as well on helping me tamp down my own feelings of anxiety. I’ve learned that hope and fear are two constants cancer survivors live with, and the best oncologists are able to respond to both sides of this coin.
Cancer has led me to live the best life I can and given me the most genuine sense of who I am.— Adam P. Stern, MD
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I am incredibly lucky to have found a supportive community of survivors who are helping me cope with my cancer, especially those on the website SmartPatients.com. And I have overwhelming gratitude for the excellent medical care I receive from my oncology team, too numerous to mention here.
But I need—and all patients need—researchers to do more. We need better and faster advances, so that more cancers like mine can be turned into chronic illnesses that patients can live with for a long time.
Cancer has led me to live the best life I can and given me the most genuine sense of who I am. I say yes to things I want to do and no to things that aren’t congruent with that vision of who I am now and what’s important to me.
You shouldn’t have to have cancer to learn this valuable lesson. No matter what our life circumstances are, we should all be engaging in the parts of our lives that we find fulfilling and squeezing out the parts that aren’t enriching. ■
Dr. Stern is Director of Psychiatric Applications at the Berenson-Allen Center for Noninvasive Brain Stimulation at Beth Israel Deaconess Medical Center and Assistant Professor of Medicine at Harvard Medical School. He lives in Newton, Massachusetts.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from the survivors interviewed and should be considered anecdotal.