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Oncologist Jennifer Kelly, MD, PhD, shares her personal experiences as a stomach cancer patient, recognizes the barriers between cancer care providers and patients, and suggests ways of improving these interactions.
In 2011, I was jogging while on a business trip in Los Angeles and collapsed during the run. Within hours, I was at the hospital at UCLA Medical Center on a gurney headed for a CT scan of my abdominal cavity. I remember telling the ER physicians that I was a doctor and recommending my own course of action. As my advice to the ER doctors went largely ignored, I realized, at that moment, that being a doctor myself really didn’t matter.
I wasn’t a doctor anymore. I was a patient.
At the time, I recalled that The Archives of Internal Medicine had published a much-discussed study that revealed doctors might recommend different treatments for their patients than they would for themselves.1 They were far more likely to prescribe a potentially life-saving treatment with severe side effects for their patients than they were to pick that treatment for themselves. Yes, doctors were much more willing to risk their patients’ lives than their own; they were much more willing to gamble with their patients’ lives than their own.
Understandably, people are worried that these findings mean doctors know something they’re not telling their patients. But my own experience with illness taught me a simpler truth: when it comes to their own health, doctors are as irrational as everyone else.
I was diagnosed with stage III stomach cancer. I knew that the diagnosis was bad news; I’d seen the disease and its consequences many times while wearing a white coat, a stethoscope dangling from my neck, at a patient’s bedside.
At the beginning, I knew intellectually what was in store for me. I reluctantly allowed myself to be a patient, to trust my doctors and to let them lead me through the treatments and complications and side effects that rolled out with alarming regularity. I submitted to a brutal treatment regimen that had not changed much in over 40 years.
I soon realized I had no idea what kind of rabbit hole I had fallen into.
For my doctors, it was all about the numbers, the staging of my cancer, my loss of weight and strength. For me, too, it was about the numbers: the number of steps I could take by myself; the number of people I counted that passed by our bedroom window; and how many hours I could stay awake before sheer pain and exhaustion set in.
But it was also about more: my world progressively shrinking to a small, sterile universe between the interminable nausea and the chemo brain that left my head both empty and feverish—between survival and death. By the reckoning of my physicians, survival was a percentage, and a horrible one—15% to 70% if I completed the treatment regimen. That seemed to be incredibly wide spread. More and more I found myself thinking about percentages. If I completed the regimen and the disease returned, there were seemingly no other viable treatment options. It was morphine and palliative care. I was 39 years old. Death was a 100% certainty, eventually. So did it matter?
During one particularly desperate moment, I decided that I had had enough. I refused further treatment. I lay in my bed without anxiety, comfortable that I had made the correct decision. I watched the events around me, including the distress of my husband, Brian.
My doctors couldn’t override it or persuade me to change my mind, but, luckily, my husband, Brian, could and did. From my mental cocoon, Brian was by my side convincing me to finish treatment.
My dreams of dying were not the products of anxious moments of terror. I was simply incapable of making the right decision for myself. My doctors were professional but ultimately could not decide for me. When neither doctor nor patient can make the right decision, it is vital to have a caring family member advocate on your behalf. Without Brian, and his tireless commitment to my recovery, I wouldn’t be here today.
While I am still battling cancer and have not yet returned to work nor am I leading a normal life, my illness has changed me profoundly as a physician. No amount of doctoring can prepare you for being a patient. During the past 2 years, I have endured multiple treatment methods, metastasis, and most recently the discovery of a brain tumor that threatens my eyesight. The past year has been full of the most vulnerable moments in my life.
If anything, it’s that recognition of vulnerability as well as expertise that makes me a better doctor today. It’s also given me a perspective on how I would change the way I interact with my cancer patients if I return to work. I’m trying to chronicle my experiences—from diagnosis to death—in hopes that other physicians will learn how you can interact with your patients more effectively.
There was an undeniable shock that disrupted all of the carefully constructed systems and routines with which I moved from day to day. For example, even the mindless greetings that I received from friends and colleagues after my cancer had been diagnosed had changed. How does someone with the recent diagnosis of cancer answer the question, “Hi! How are you?” The most accurate answer is, “Not so good. I have cancer.”
The shock of the diagnosis introduced chaos into my daily routines that I had carefully crafted to maximize efficiency in performing everyday tasks. Now my whole life revolved around being sick; it was hard to put structure to my day when I didn’t know how I was going to feel moment to moment. How should I rearrange my incredibly busy life to continue to move forward, even if at reduced speed? What, if anything, should I eliminate? Eliminating an important activity felt tantamount to giving up, but I tried to carry on despite (and at times denying) my disease. The response to changes in my routine spilled over into my personal life, affecting the inevitable reconfiguration of relationships with loved ones and friends.
A couple of friends thought that it must be comforting to be an oncologist when struck with cancer, because I could better understand my disease and its treatment than most cancer patients. However, the opposite is true: having actively cared for patients dying of cancer brought to mind vivid images of physical and social involution, the inevitable melting away of body mass, disability, pain, and morbid deathbed scenes. I am haunted by the visions of patients who died on my inpatient service before I received my diagnosis.
I recall waiting for my first dose of chemotherapy, sure that it would kill me because of the awful side effects of the drug that I had observed during my practice. While some think of chemotherapy as a powerful healing antibiotic, I can only think of it as a poison.
Percentages also proved difficult for me. As oncologists, we routinely give our patients success percentages as part of a prognosis; often these percentages are “X to Y percent of success,” with “X” being the low number and “Y” being the top end. In order to maintain hope, our patients naturally focus—if not fixate—on the top number; as a clinician, however, I know that those 2 numbers are the outliers and the majority of the cases actually occur somewhere closer to the median. When given a spectrum of percentage for my prognosis, inevitably my experience causes me to run the numbers in my head and to realize that my chances are much lower than that higher, hopeful number.
The discomforts I fear the most are physical pain. I know that pain is controllable for most patients with cancer, and as a physician I know that I had greater access to pain medications than do most patients. Yet I suffer from pain during my cancer treatment and continue to fear the possibility that increased pain would accompany the recurrence and advancement of my disease. Pain is a double-edged sword; I would happily get rid of the pain by taking pain meds; I hesitate to do that, however, because I fear losing the pain as an indicator that my disease may be progressing.
At the time my cancer was diagnosed, I ran on a regular basis. By the time of my first round of chemotherapy, my quality of life was substantially worse than when my cancer was first diagnosed. In fact, myopathy (weakening of muscles) had already developed. In addition, because ataxia (loss of coordination) and neuropathy (abnormal nerve function caused by the chemotherapy) also have set in, my life was radically different within just a few months.
Drug and other treatment effects
I suffered through adverse effects of treatment (including nausea, vomiting, weight fluctuation, insomnia, anxiety, and depression) as silently as I could, not wanting to complain to my providers too much. Although we cannot know what goes through the minds of our patients when they suffer from side effects of the treatments that we prescribe, I felt that because I was a physician, I should not complain. So, I rarely mentioned these adverse treatment effects unless I was explicitly asked about them. I wish my doctors would have asked me more about the side effects because I probably would have answered them honestly if they asked. I am sure we could have altered my treatment in such a way that my everyday quality of life improved. If I return to an oncology practice, I now know I will be better about taking more detailed histories on their experiences with side effects from my cancer patients.
As physicians, we are the ones on whom others rely for their well-being and, at times, comfort and consoling. Hence, I found it very difficult to become dependent on others for my personal and professional needs. But my cancer and treatments gave me no choice: I had to be dependent on my family members, friends, and coworkers. I discovered that others wanted to help my husband, Brian, and me, even needed to help us to feel that they were doing something to ease our burden. We came to realize that the therapeutic effects of the dependency were bidirectional. We thus sought opportunities for friends and family members to help us, which consequently lowered our internal barriers against seeking and accepting help. Nonetheless, we found, as others have, that my cancer resulted in significant adverse effects on the lives of our loved ones who cared for us. In fact, some family members remain in denial about my disease and have unrealistic expectations for a speedy recovery.
Not too long after receiving my cancer diagnosis, I experienced overwhelming feelings of doubt and doom. It was difficult to be optimistic and to carry on activities where the results were beyond the time horizon of a few months. Without hope, I was lost and miserable. However, when I found hope to be lacking, it was supplied in abundance by the large network of friends and colleagues that I had established during our careers.
Although I fear the dying process, death itself is another matter entirely. I view death as the absence of both life and suffering, the sudden ending of existence, thought, and possibly the meaning of my life. Regardless of my religious beliefs, I know that death would be a leave-taking from our loved ones, family, and friends. I worry more about what would happen to those I leave behind than I worry about what would happen to me. What happens after death is inevitable and uncontrollable, but I cannot help but feel responsible for the suffering and loneliness I would leave in my wake. Logically, I know I am not responsible for these things, but I feel responsible nonetheless.
Having cancer is not all bad
Having enumerated what is so bad about having cancer, I must state that having cancer has, in fact, had beneficial effects on my life. Having cancer motivated me to think about what I was doing every day, to prioritize better, and to spend time on those aspects of my life that are truly important. I have tried, and will continue to try, to give meaning to my remaining time. Having faced death, I have found life to be more intense.
Final thoughts about life with cancer
I hope that by expressing my experiences with cancer, I will encourage providers of cancer care to better understand what their cancer patients are facing. I have this advice: Do not just focus on survival! Encourage your patients to maximize the time that they have and to value each moment each day. Talk to your patients. You must try to understand what it is like to have cancer, to live with it and be treated for it, and to survive it or succumb to it. Acknowledge what you can do to help your patient and do it.
1. Ubel PA, Angott AM, Zikmund-Fisher BJ. Physicians recommend different treatments for patients than they would choose for themselves. Arch Intern Med. 2011;171:630-634.
Note: This article has been adapted with permission of the author from 2 posts originally posted at KevinMD.com. The originals can be found online: “A diagnosis of stomach cancer profoundly changes an oncologist” (http://bit.ly/y8G9AM) and “When it comes to cancer, do not just focus on survival” (http://bit.ly/w0SmpO).
Dr Kelly is a molecular geneticist and oncologist currently on medical leave.