I could not shake the fear that this reprieve was an illusion, that my lymphoma would come back, and that I would be blindsided by its unrelenting return.— Rozalina G. McCoy, MD, MS
Tweet this quote
The ASCO Post is pleased to reproduce installments of the Art of Oncology as published previously in the Journal of Clinical Oncology. These articles focus on the experience of suffering from cancer or of caring for people diagnosed with cancer, and they include narratives, topical essays, historical vignettes, poems, and photographic essays.
To read more, visit ascopubs.org/journal/jco.
“I do not recommend any further scans, unless you develop concerning symptoms, now that you are in complete remission.”
I am a young woman with two preschool-aged children, a wonderful family, and a rewarding career. Three months ago, I completed a 6-month course of chemotherapy for advanced Hodgkin lymphoma. I am also a physician and health services researcher and deeply believe in the theory and practice of high-value cost-conscious care. In fact, my research focuses on improving the patient-centeredness and value of diabetes care, and on the reduction of overtesting and overtreatment that may lead, not only to wasted resources, but also to real patient harm.1,2
Throughout my career, I have been involved in state3 and institutional efforts to identify and reduce low-value services, consistent with the American Board of Internal Medicine Choosing Wisely initiative to promote and enable a conversation between patients and clinicians to ultimately avoid unnecessary medical tests, treatments, and procedures.4 I also advocated for patients and clinicians both to play a role in fostering high-value cost-conscious care through the use of shared decision-making to marry autonomy and paternalism and thus ensure patient-centeredness without the undue burden of unsupported choice. That is why my visceral reaction to my oncologist’s recommendation not to perform routine surveillance scans after Hodgkin lymphoma was so unexpected. I was surprised, confused, fearful, and even defiant. Could I really forgo these tests?
The American Society of Hematology Choosing Wisely recommendation advises providers to “limit surveillance computed tomography (CT) scans in asymptomatic patients following curative-intent treatment for aggressive non-Hodgkin lymphoma.”5 In Hodgkin lymphoma, the National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines in Oncology (NCCN Guidelines®) were not definitive in its recommendation for post-treatment surveillance of Hodgkin lymphoma,6 but my oncologist felt strongly about forgoing CT and other routine imaging unless warranted by symptoms or signs of illness. She argued that routine imaging generates false-positive findings, anxiety, and high costs without a definitive or meaningful survival benefit.7-14 Wearing my professional hat, I agreed. But, as the patient, I found myself anxious, afraid, and wanting more. Not because I was confident that doing more would help, but because doing something—anything—gave me the illusion that I had some semblance of control over what would happen to me. I was scared.
Fear of Recurrence
During the past 9 months, I had been engaged, composed, and realistically optimistic as I underwent diagnosis and treatment (6 months of ABVD [doxorubicin, bleomycin, vinblastine, and dacarbazine] chemotherapy) for Hodgkin lymphoma. However, when I emerged on the other side of treatment, instead of finding peace, I was more anxious than ever before. I longed for the comfort of a defined, structured, and standardized treatment program, with its unwavering cycle of biweekly blood work, clinical evaluation, chemotherapy, and post-chemotherapy symptoms, no matter how incredibly unpleasant they were. I was, of course, thrilled to be done with treatment and elated to return to parts of my life that had been put on hold. However, I also could not shake the fear that this reprieve was an illusion, that my lymphoma would come back, and that I would be blindsided by its unrelenting return.
As I sat in my oncologist’s office, I understood something I should have realized a long time ago: it’s hard to practice what I preach. Although common sense and simple in the abstract, the application of value principles to individual circumstances was much harder. I was torn between following my oncologist’s advice to do less (thereby pursuing high-value and cost-conscious care) and acquiescing to my yearning to do more. Imaging seemed essential to early detection of recurrence, even if it was not consistently supported by the evidence. I was afraid we would miss something, my disease would progress, and I would die. My oncologist taught me that such fear of recurrence is common,15,16 and I am grateful for her insights, as she patiently guided me through the confusion and fear and allowed me to find some comfort in our decision, in my own time and in my own way.
We have deliberately replayed our discussion about clinical vs routine radiographic surveillance at every subsequent appointment, as I near the end of my first year with the diagnosis. It is a conversation that echoes in my mind. Every time I have a cold, feel tired, or ache from a long day with two young kids. I wonder if my symptoms are normal or if they herald the recurrence of lymphoma. Because the NCCN Guidelines are not prescriptive and surveillance imaging is said to be “reasonable,”6 I invariably find myself wondering, “what’s the harm of just one more CT?”
I know the harms. I saw my medical bills and know the costs that repeated imaging could add. I understand the anxiety of waiting for routine imaging—in essence, living from scan to scan. I had also experienced the downstream effects of false-positive findings. Just 2 months earlier, a post-chemotherapy positron-emission tomography–CT revealed a minimally concerning, but nonetheless positive, new lymph node that had to be worked up and biopsied. In retrospect, this scan may have been low value, but my oncologist had relented to my request to get it done.
The biopsy came back benign, but I cannot forget the buildup of anxiety that led to the scan and the biopsy as I waited for the results that I hoped would provide a temporary reprieve from my disease. I did not want to experience this again, yet I yearned for the affirmation of being cancer-free.
Basic Tenets of Shared -Decision-Making
Living through these experiences led me to question and appreciate the basic tenets of shared decision-making. Shared decision-making is predicated on the idea that clinical decisions should be reached through conversation and consensus between clinician and patient. In this dynamic conversation, clinicians contribute clinical expertise about the disease and treatment options, and patients provide expertise about their body, circumstances, goals for life, and expectations from care.17
Yet, after my diagnosis, unlike a patient with a chronic disease, I did not feel like an expert. I had not had the chance to learn my new post-cancer preferences or my capacity, and I did not know how they aligned with my treatment and surveillance options. My goals were to live every day the best I could, have no regrets, survive, and put these months behind me. I did not know how surveillance imaging or the many other day-to-day decisions I have had to make throughout this journey map to these personal goals.
Through open conversation about my fears and concerns, my oncologist and I have agreed on clinical follow-up visits and laboratory checkups for now, with the use of imaging if new or concerning symptoms develop. Through exploration of the reasons for wanting to do more, I was able to accept doing less. I still long for the additional reassurance that imaging offers, but I realize that no test can provide complete reassurance. I hope that, with time, I will grow to be more comfortable with uncertainty and less afraid of what may be hiding underneath my skin.
As a physician in clinical practice, I no longer have the same naive confidence in my ability to counsel patients about the waste of low-value tests, procedures, and treatments. Instead, I can empathize in a new and real way with their worries, hopes, and internal conflicts about treatment decisions. I hope I can do for them what my oncologist continues to do for me: practice evidence-based medicine; instill trust through compassion; and empower all patients to freely express their fears, uncertainties, and expectations along with their goals, preferences, and values.
At the time this article was published in the Journal of Oncology, Dr. McCoy was working at the Mayo Clinic, Rochester, Minnesota. She is now an endocrinologist and internist in the Department of Community Internal Medicine in Minnesota at the Mayo Clinic.
DISCLOSURE: Dr. McCoy reported no conflicts of interest.
1. McCoy RG, Van Houten HK, Ross JS, et al: HbA1c overtesting and overtreatment among US adults with controlled type 2 diabetes, 2001-13. BMJ 351:h6138, 2015.
2. McCoy RG, Lipska KJ, Yao X, et al: Intensive treatment and severe hypoglycemia among adults with type 2 diabetes. JAMA Intern Med 176:969-978, 2016.
3. Minnesota Department of Health: Analysis of low-value health services in the Minnesota all payer claims database: Available at https://www.health.state.mn.us/data/apcd/docs/lvsissuebrief.pdf. Accessed February 5, 2020.
4. Choosing Wisely: An initiative of the ABIM Foundation. Available at http://www.choosingwisely.org. Accessed February 5, 2020.
5. Hicks LK, Bering H, Carson KR, et al: The ASH Choosing Wisely campaign. Blood 122:3879-3883, 2013.
6. Hoppe RT, Advani RH, Ai WZ, et al: Hodgkin Lymphoma Version 1.2017, NCCN Clinical Practice Guidelines in Oncology. J Natl Compr Canc Netw 15:608-638, 2017.
7. Bestawros A, Foltz L, Srour N, et al: Patients’ and physicians’ roles in detecting recurrent Hodgkin lymphoma following complete remission. Ann Oncol 24:1359-1363, 2013.
8. Dann EJ, Berkahn L, Mashiach T, et al: Hodgkin lymphoma patients in first remission. Br J Haematol 164:694-700, 2014.
9. Jakobsen LH, Hutchings M, de Nully Brown P, et al: No survival benefit associated with routine surveillance imaging for Hodgkin lymphoma in first remission. Br J Haematol 173:236-244, 2016.
10. Pingali SR, Jewell SW, Havlat L, et al: Limited utility of routine surveillance imaging for classical Hodgkin lymphoma patients in first complete remission. Cancer 120:2122-2129, 2014.
11. Sussman J, Varela NP, Cheung M, et al: Follow-up care for survivors of lymphoma who have received curative-intent treatment. Curr Oncol 23:e499-e513, 2016.
12. Cohen JB, Kurtz DM, Staton AD, et al: Next-generation surveillance strategies for patients with lymphoma. Future Oncol 11:1977-1991, 2015.
13. Lee AI, Zuckerman DS, Van den Abbeele AD, et al: Surveillance imaging of Hodgkin lymphoma patients in first remission. Cancer 116:3835-3842, 2010.
14. Thompson CA, Charlson ME, Schenkein E, et al: Surveillance CT scans are a source of anxiety and fear of recurrence in long-term lymphoma survivors. Ann Oncol 21:2262-2266, 2010.
15. Arès I, Lebel S, Bielajew C: The impact of motherhood on perceived stress, illness intrusiveness and fear of cancer recurrence in young breast cancer survivors over time. Psychol Health 29:651-670, 2014.
16. Shay LA, Carpentier MY, Vernon SW: Prevalence and correlates of fear of recurrence among adolescent and young adult versus older adult post-treatment cancer survivors. Support Care Cancer 24:4689-4696, 2016.
17. Hargraves I, LeBlanc A, Shah ND, et al: Shared decision making: The need for patient-clinician conversation, not just information. Health Aff (Millwood) 35:627-629, 2016.