Jul 20, 2018
A physician finding balance when also being a patient.
Read the related article "Searching For Evidence-Based Reassurance Where None Could Be Found" by Rozalina G. McCoy on JCO.org.
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Cancer Stories-- The Art of Oncology Podcasts presents Giuliana Rancic reading the essay "Evidence-Based Reassurance Where None Could Be Found," by Rozalina McCoy, published April 20, 2018.
"Searching for Evidence-Based Reassurance Where None Could Be Found," Rozalina G McCoy. Quote, "I do not recommend any further scans unless you develop concerning symptoms now that you are in complete remission," end quote. I am a young woman with two preschool age children, a wonderful family, and a rewarding career. Three months ago, I completed a six-month course of chemotherapy for advanced Hodgkin's lymphoma.
I am also a physician and health services researcher, and I deeply believe in the theory and practice of high-value, cost-conscious care. In fact, my research focuses on improvement of the patient-centered and value of diabetes care and on reduction of overtesting and overtreatment that may lead, not only to wasted resources, but also to real patient harm. Throughout my career, I've been involved in state 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.
I also advocated for patients and clinicians to both 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 recommendation not to perform routine surveillance scans after HL was so unexpected. I was surprised, confused, fearful, and even defiant. Could I really forego these tests?
The American Society of Hematology Choosing Wisely recommendation advises providers to limit surveillance computed tomography scans in asymptomatic patients following curative intent treatment for aggressive non HL lymphoma. In HL, the National Comprehensive Cancer Network Guidelines were not definitive in their recommendation for post-treatment surveillance of HL. But my oncologist felt strongly about foregoing 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 definitive or meaningful survival benefit. 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.
During the past nine months, I've been engaged, composed, and realistically optimistic as I underwent diagnosis and treatment, six months of ABVD, doxorubicin, bleomycin, vin-blastine, and dacarbazine chemotherapy for HL. 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 bloodwork, clinical evaluation, chemotherapy, and post-chemotherapy symptoms, no matter how incredibly unpleasant these 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 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 not consistently supported by the evidence. I was afraid that we would miss something, that my disease would progress, and that I would die. My oncologist taught me that such fear of recurrence is common. 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, versus 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 National Comprehensive Cancer Network guidelines are not prescriptive, and surveillance imaging is said to be reasonable, 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 cost 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 two 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 had 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.
Living through these experiences led me to question and appreciate the best tenets of shared decision-making. Shared decision-making is predicted 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.
Yet, after my diagnosis, unlike a patient with 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 mapped to these personal goals. Through open conversation about my fears and concerns, my oncologist and I have agreed on clinical followup 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 tests 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 that 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.
I'm Lidia Schapira, your host for Cancer Stories-- the Art of Oncology Podcasts. Our guest today is Dr. Rozalina [? Gerbina ?] McCoy, author of the essay "Searching for Evidence-Based Reassurance Where None Could Be Found, to be published in Journal of Clinical Oncology. Dr. McCoy is an associate professor of medicine at the Division of Primary Care Internal Medicine and Division of Health Care Policy and Research at Mayo Clinic in Rochester. She's a primary care physician, endocrinologist, and health services researcher. Welcome to the program, Rozalina. It's a pleasure to have you, and we enjoyed reading your essay. Tell us a little bit about what led you to write this.
I think I am definitely not one to write pieces like this, being primarily a very data, big data driven researcher. But as I was coming back from one of my appointments after I finished treatments in chemotherapy, it struck me that I was really wanting the things that I have been telling my patients, my colleagues, the students I teach, not to do.
And at first, I thought it was ironic and interesting. And then I thought that it really was teaching me a lot about myself, about disease management, things that I thought I should have known before, but never encountered. And as I was speaking with my friends, they tried to make me feel better and say, well, this is not something that's obvious. It's something that I have unique insight into, having just gone through treatment, especially in the context of being a physician and a researcher.
So I wanted to share it, especially after I got similar feedback after teaching medical students about this. So I think a lot of people thought it was interesting and would help. So that the biggest reason I did it, I think, is really to help physicians understand what's going on in the minds of their patients, when they may be too differential to just say it themselves, and for patients to understand what they're going through and that it's very reasonable and very normal.
You're absolutely right. And we learned so much from-- and physicians who then are cast patients and have to learn what it's like to be on the other side. You talk about how you handled, in your professional life, the idea of making decisions that take into consideration cost and value. And then, when you as a cancer patient had to make these decisions with your oncologist, it felt very different. So tell us a little about that. How did you manage to switch between those two roles, and how did you manage to adapt all of a sudden to listening to the advice of your oncologist and perhaps even ignoring your gut, which was to do more?
Yeah, so I think I would be very kind to myself if I said that I have accepted this and come to terms with this. I'm not quite sure I have. This is something that every time I speak with my oncologist or even with my friends and colleagues, I think it's a battle that I fight every day. I still think that chronic disease management is very different from cancer care. But I understand that that's influenced by my own personal experiences and being very biased and subjective in this area.
And I think it's very important to incorporate this patient preference and now the overall context of the disease and the treatment when you make decisions. But what I realized is that it's not always fair to expect patients to be able to contribute that to the conversation. And I realize that shared decision-making is a lot harder than I thought it was, not just for the physician, but also for the patient.
I am still not completely thrilled, I think, with our plan of action. It helps that I trust my oncologist 100%. I think she really has the best intentions at heart. She is data-driven. She shares the data with me when I ask her to. So I trust that what she's doing is for the best. I don't like it.
I think it's very similar to my conversations with my little kids, who I hope know that what I'm telling them is the right thing to do, even if they don't like it, and they don't want to do it, so they just put up with it, because I say so. So I think I'm taking somewhat of the same approach with my oncologist.
It's funny and sweet and also difficult, of course, to think about all of these things. Here you are. You describe yourself. And as you lead into the assay as a mother, as a physician, health services researcher, and here you are. You bring all of this. And you're diagnosed with a lymphoma. You undergo the treatment. And then at the end, you had this longing, it would seem, for that structure, for wanting to continue to do things, because. It always feels better to do something.
And then you start to ask yourself, well, what is reasonable? So it's interesting to have you tell us a little bit about how emotionally complex this is, right? Maybe that's one of the things that happened to you, that all of a sudden, when you were feeling all of these things, it became harder to know what was right. Is that about what you were trying to convey?
Absolutely. I think I have been and continue to be torn about both wanting to have surveillance imaging and not wanting it, at the same time. I think I want the reassurance and the definitiveness that having a positive result, some, would offer. I want it to actually be the negative result that's going to stay with me, even though I know that's not true. And if I do get a negative result, it's probably not as negative as I want it to be, because things can change very quickly. So reassurance today means nothing a month from now.
And then, at the same time, I don't want to have to be doing the imaging, because of the anxiety leading up to it. And I had that-- what I had to have my PET scan after treatment. I know the likelihood of false positives and having to work those up. I think, deep down, I am still fighting the mini tantrum, as I call it, of I just wish I didn't have to deal with all of this-- which I know is not going to go anywhere.
So the hardest part, I think, is both wanting and not wanting this something at the same time, and not fully knowing how to process it yet. But knowing the fact that I trust my physician completely is the only reason, I think, I can get through this. Because I know that she will do what is best for me. I think that also, most of all, taught me the importance of having trust in your physician, having that good relationship, knowing that you can question what is recommended and trust the results, and not second-guessing yourself at the end.
Yes, oh, that's so important. So you mentioned this quest for reassurance. And it's in the title of your essay, that you're searching for reassurance. So if you're not going to find reassurance in the scans, where do you find it?
So my oncologist tells me that I'll find it with the passage of time as I learn my new body and I know what is normal and what isn't, and trusting that there is nothing bad hiding there, and that my cold and my flu is just that. And at the same time, I think that finding reassurance in every day-- none of us know what's going to happen in the future. And this way, I learn to really make the most of every single day, no matter what the future holds-- not being fatalistic or pessimistic, thinking that I will die tomorrow, but really having the confidence of knowing I am here now, and that's what really matters. And we'll see what tomorrow holds.
I wonder how this personal experience has affected the way you now discuss things with your patients. Do you have any anecdotes you can share with us?
Yeah, probably too many. With sharing things with my patients, especially, as a primary care physician, I really get to form a bond with the people I take care of. I think I can very personally connect with them about their fears as we are working up unknown symptoms, talking to patients about the fears that come with waiting for results or even waiting for scans to be scheduled, fear of the unknown, and the fear that they likely experience as they are receiving information or not receiving information from the specialist involved in their care.
I know that many of my patients with whom I've had this conversation, they've been very appreciative of the fact that I share this with them, so that they don't feel cowardly for being afraid or for wanting reassurance. And at the same time, they don't feel like they're not doing their all or their best if they don't want to be very aggressive. I know this is something we're taught to talk about with elderly patients and at the end of life, but not with younger patients. So being able to just tell them my story very briefly and telling them what I have felt, I think it allowed them to talk to me about their emotions, their fears, and be more OK with it.
Yeah, it sounds like it's been an experience that has led to probably even some emotional growth in some ways. That's what I hear from my patients and what I read in your words. When we talk about handling the uncertainty and these fears that cancer can shorten your life or affect you in so many different ways, we sometimes talk about handling or managing uncertainty. But I wonder if you can tell us, from the perspective of your lived experience, if you think it is possible to manage or handle it, and if so, how you would distill that wisdom for your colleagues who are dealing and trying to do their best to counsel their patients with cancer every day.
I mean, I found it very helpful for my oncologist to tell me that this is normal, and everyone feels that way. And the fact that I have doubts does not mean that it's necessarily going to happen. So what I mean by that is I thought that if I am worried that I have a recurrence, because I'm not feeling well, that that means something must be there. Because there's a reason why I'm worried. I'm not a worrier by nature. And so acknowledging the fact that this is a normal reaction and a normal emotion, it made me feel less anxious that there's something going on that I may be missing.
It's also reassuring to know that if there is something going on, it's very obvious. It's not something that's just going to sneak up on you. Because then it makes me be less anxious that I may be missing something. And I can put it out of my mind with a thought that, well, if it's going to be there, it's going to hit me in the face, and it's going to be obvious. So if nothing is hitting me in the face, it's OK.
And trying to put it out of mind, I think if we were to talk, hopefully, five years from now, I know I would have a lot more insights. I am at my one-year post-diagnosis anniversary now. So it's still very new. And I think a big part of coming to terms with it was writing this piece, to help me process what I'm feeling, why I'm feeling it, and rationalize it, in a way. So I think I would encourage patients not journal, but something. Talk to colleagues, friends, family, or even just write things down as a way to process what you're feeling. Because it's a lot, and I think it's hard to understand if you haven't got through it.
Yes, and we have learned that through journaling and talking, and even attending support groups, it gives people the opportunity to stay connected in some ways to normalize their experience, as well, and also to get and receive support. Well, I thank you for your sincerity. I sincerely hope that you write a piece for us several years from now and that we can have another chance to talk about lessons learned. Thank you so much, Rozalina, for being a part of this program. And thank you, all, for listening.