Perhaps my 35-year career as a surgical oncologist and researcher specializing in soft-tissue sarcomas should have prepared me to recognize the signs of chronic lymphocytic leukemia (CLL) when they first appeared a few days before Christmas in 2016, but it did not. In fact, my symptoms were so vague that I thought the acute abdominal pain I experienced one night after dinner at a restaurant was caused by food poisoning. The next morning, despite still feeling weak and queasy, I went to work at The Ohio State University (OSU) Comprehensive Cancer Center, but left at midday, something I’ve never done before.
Unable to eat, drink, or sleep, I went to the OSU Emergency Center the next day to find out what was going on. I had an electrocardiogram to rule out a myocardial infarction and a ventilation-perfusion (VQ) scan to rule out a pulmonary embolism. The VQ scan showed I had patchy infiltrates in my left lung, and the thought was I probably had community-acquired pneumonia. Because I was severely dehydrated, I was admitted to the hospital for 2 days of rehydration. A follow-up imaging scan of my chest and abdomen was scheduled following the Christmas and New Year’s holidays to make sure the pneumonia had been resolved.
I got through the holidays without any further physical distress, but by the second week in January 2017, I again started feeling very weak and feverish and had no appetite. Still, I pushed through these symptoms and kept to my admittedly very involved work schedule at the cancer center. I completed three scheduled surgeries in one long day and then had my follow-up scans. By the time they were completed, there were no radiologists still on site to interpret the results, so I had the images sent to my home computer and initially examined them myself.
When I opened the file on my computer, my first thought was the scans must have been mislabeled. What I was seeing could not possibly be an image of my own abdomen because the scans showed a massively enlarged spleen. I examined myself and was shocked to find that I did, in fact, have a large intra-abdominal mass.
I called my friend and colleague, John C. Byrd, MD, the D. Warren Brown Chair of Leukemia Research at The Ohio State University College of Medicine, and asked him to take a look at the scans. He called back within minutes and instructed me to get in my car and, if possible, to drive to the James Cancer Hospital without my seatbelt latched. My spleen was about to rupture, and I needed emergency surgery. The operation was successfully performed and just in time. As my spleen was being moved from the instrument stand to the operating room back table, it ruptured.
My spleen was very enlarged and inflamed and had infiltrated my diaphragm; my surgeon had to remove a small portion of my diaphragm to extract my spleen. A pathologic examination of my spleen found a very large Listeria abscess, which, in retrospect, may have been partially due to an already known pan-hypoimmunoglobulinemia diagnosed several years earlier.
A Cancer Diagnosis
A few days after the surgery, my colleague Lynne Abruzzo, MD, PhD, Professor of Pathology and Co-Director of the Cytogenetics Laboratory at OSU, called and said: “I have great news for you.” Because we see each other socially, I assumed she and her husband wanted to invite me out to dinner. But she was actually calling to tell me that, in addition to the Listeria abscess, the pathology examination showed I had a chromosome deletion in the 13q14 region, a common cytogenetic abnormality found in CLL, and a good prognostic factor.
“When I speak with patients about cancer fatigue and the benefits of a clinical trial, I can speak with personal knowledge of these issues.”— Raphael E. Pollock, MD, PhD
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“Isn’t that deletion associated with CLL?” I asked. “Yes,” she said. “Didn’t they tell you that your spleen is full of CLL infiltrates?” And that’s how I learned I have cancer.
It is a rare privilege to be both a cancer care provider and a cancer survivor. I have learned firsthand what it is like to be diagnosed with an incurable—but usually manageable—malignancy, to participate in a clinical trial, and to feel the sting of the financial toxicity and side effects of treatment.
After my diagnosis, I was offered participation in a clinical trial evaluating ibrutinib, a Bruton’s tyrosine kinase (BTK) inhibitor that has revolutionized the treatment of CLL. The drug comes with a hefty price tag—more than $200,000 a year, thankfully mostly covered by Medicare—as well as a number of side effects, including adverse cutaneous events. In my case, this resulted in deep fissures in the tips of my fingers that made it very painful to scrub for surgery. I have since been switched over to acalabrutinib, a second-generation BTK inhibitor, and the fissures in my fingers have promptly healed. Although I still have active disease—there are sizable CLL deposits on both sides of my diaphragm around the aorta—the only physical finding of the cancer is fatigue, which appears for several hours most afternoons.
Living With Chronic Cancer
I was fortunate to be accepted into the clinical trial, which covered the cost of ibrutinib. The experience has given me a new appreciation of the financial hardship faced by many patients with cancer. I am also learning how to deal with the uncertainty of living with chronic cancer. About 10% of patients with CLL will develop a rare complication called Richter’s transformation, an aggressive type of large cell lymphoma that is lethal for most within months of diagnosis. However, that means most patients with CLL do not experience this problem. Holding onto that reality; having a wonderfully supportive network of family, friends, and colleagues; and working in oncology are constant sources of inspiration and have been critical in my coping with cancer.
If there is a silver lining in the cloud, it is in a newfound opportunity to bring a personal experience–based authenticity to the clinic. When I speak with patients about cancer fatigue and the benefits of a clinical trial, for example, I can speak with personal knowledge of these issues. I am grateful to be able to bring these additional perspectives into interactions with my patients who entrust me with their care.
Helping Survivors Retain Realistic Hope
Having treated patients with sarcoma for more than 35 years may have helped prime me to be a patient with cancer. Like CLL, sarcoma can be a challenging disease to treat. Therapeutic advances have not come as quickly as they have in other difficult-to-treat cancers, and surgery remains a critical component in overall sarcoma management.
Among the many lessons I have learned since my diagnosis is that we must never give up on patients simply because a particular treatment has not been effective. Patients need our ability to help them retain realistic hope. We need to let them know that new therapies are being developed all the time.
Bringing realistic optimism to interactions with our patients provides a big boost to the quality of our lives as cancer survivors. It has certainly made a huge difference to me and my family, and so I am very grateful to all of you.
DISCLOSURE: Dr. Pollock reported no conflicts of interest.
Dr. Pollock is Director of The Ohio State University Comprehensive Cancer Center in Columbus. He is also Professor in the Division of Surgical Oncology, holds the Klotz Chair in Cancer Research, and is Director of The Ohio State University Sarcoma Research Laboratory.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.