Author's Accepted Manuscript
The physician becomes the patient: How my breast cancer journey taught me to be a better doctor Maria Rosa Costanzo M.D., F.A.C.C., F.A.H.A.
http://www.jhltonline.org
PII: DOI: Reference:
S1053-2498(14)01111-5 http://dx.doi.org/10.1016/j.healun.2014.04.013 HEALUN5758
To appear in:
J Heart Lung Transplant
Cite this article as: Maria Rosa Costanzo M.D., F.A.C.C., F.A.H.A., The physician becomes the patient: How my breast cancer journey taught me to be a better doctor, J Heart Lung Transplant, http://dx.doi.org/10.1016/j.healun.2014.04.013 This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting galley proof before it is published in its final citable form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
The physician becomes the patient: How my breast cancer journey taught me to be a better doctor Maria Rosa Costanzo, M.D., F.A.C.C., F.A.H.A.* *Midwest Heart Specialists‐Advocate Medical Group Address for Correspondence: Maria Rosa Costanzo, M.D., F.A.C.C., F.A.H.A. Edward Heart Hospital, Fourth Floor 801 South Washington Street, P.O. Box 3226 Naperville, Illinois, 60566 Telephone: 630‐527‐2730 Fax: 630‐281‐3226 E‐mail: [email protected] Lying on the exam table, eyes glued to the image of my right breast on the bedside monitor, I anticipated no life‐shaping lessons I’d soon learn about myself. No “eureka” discoveries about empathy, humility or patience jumped into my psyche. The small, solid and irregular mass just beneath the areola cared not at all that I was a busy doctor; unapologetically, it shared a simple and terrifying truth.
As a physician at the hospital, I was able to rush an ultrasound‐guided biopsy, pathology interpretation and analysis of tumor markers. The results revealed an invasive carcinoma, “triple positive” for estrogen, progesterone and the feared human epidermal factor receptor‐2 (HER‐2). While too frightened to consider the diagnosis in depth, I did reflect upon how most patients do not enjoy the advantage of such a rapid diagnosis and, once they receive it, are unable to absorb at once its full implications. I made a “note to self” that, after returning to work, I would become much more thorough in explaining diagnoses to patients, so that upon leaving my office they would hold more knowledge and less frightening uncertainty. In the weeks that followed my diagnosis, doctors’ visits, blood work and imaging tests became a whirlwind requiring the frequent help of my husband, sister and housekeeper. One day, while waiting for what seemed like a thousandth test, I recalled completing one patient’s office visit by nonchalantly ordering fasting blood work, an echocardiogram and a right heart catheterization, all to be completed before the next office appointment. Did I for a moment think about the anxiety my orders would spark, or the disruption such tests would cause in the life of my patient and her family members? I felt a prick of shame recalling my irritation toward patients who arrived at office visits without having completed all the tests I’d ordered. I didn’t know if they had a spouse, a friend or even a car to get them to appointments; I didn’t consider how some “routine” tests may make a patient feel scared or humiliated. I became acutely aware of the latter while lying face‐down on the MRI table, my breasts hanging indecently through the strategically located holes. No amount of professional success—no accolades or published research reports—could I wave in front of other doctors as a free pass to save myself from indignities so many patients had endured through the years. No advanced degrees could
save my breast; no keynote address could ensure I’d be spared further bad news. I wondered: had I ever taken seriously my patients’ complaints or anxieties as they laid on the catheterization table? I woke up from the mastectomy in room 513, a room in which I’d made frequent visits to inpatients. Tethered to the bed by the oxygen cannula, telemetry leads and two surgical drains, I felt utterly powerless. Going to the bathroom seemed an unattainable goal, until my sister grasped my predicament and called for help. The nurse spent several minutes freeing me from a tangle of wires and walked me to the bathroom without a moment to spare. As I was trying to urinate before a watchful audience, I first experienced a horrible feeling that would revisit me throughout cancer treatment: this illness was robbing me of who I was. I wondered if I could ever be the same. Propped once again in bed and reconnected to a sea of monitors, I thought of the scores of patients—of human beings—trapped in ICU beds, on ventilators, multiple IV drips, balloon pumps and cardiac assist devices. I wondered: as I patted myself on the back for saving others’ lives, did I ever truly reflect on how those therapies might affect patients’ humanity and sense of self? Did my patients, like me, wonder if they’d ever again be in control of their lives? The morning after I lost my breast, the oncologist informed me I had Stage II breast cancer, due to metastases in the sentinel and two additional lymphnodes. These tumors’ characteristics warranted both adjuvant chemotherapy and radiation therapy. I sat up in bed and asked the oncologist if he planned to use adriamycin, a frequent presence in breast cancer chemotherapy regimens, and was immensely relieved when he told me he did not. Early in my career, I’d
performed numerous cardiac biopsies on patients with adriamycin cardiotoxicity and had witnessed irreversible cardiomyopathy, in some cases severe enough to require heart transplantation. I became acutely aware of the mixed blessing of being simultaneously the doctor and the patient: you understand everything, and yet your medical training never lets you down easily; knowing every worst‐case scenario makes it all too easy to picture yourself enduring them all. After discharge, I realized how much cancer was sure to stand in the way of a busy life. With real sadness, I canceled speaking engagements and plans to attend meetings, including the 2013 ISHLT Scientific Sessions. Instead, I stayed back and tried to keep up with a relentless barrage of appointments. At one, my oncologist encouraged me to participate in the ongoing “A Study of Pertuzumab in Addition to Chemotherapy and Herceptin (Trastuzumab) as Adjuvant Therapy in Patients With HER2‐Positive Primary Breast Cancer” (APHINITY; NCT01358877), which would see
me receive taxotere, carboplatinum, and Herceptin, plus either pertuzumab or placebo. Wishing to practice what I’d long been preaching, I agreed to become a study subject. As I read the consent form, I became horrified by all the potential side effects: nausea, vomiting, alopecia, diarrhea, constipation, hypotension, leucopenia, thrombocytopenia, anemia and loss of fingernails. I, the heart disease expert, might even experience cardiac dysfunction and overt heart failure. Believing I would be beset by all of these adverse events, I felt a powerful urge to run away and refuse treatment. As I weighed my options, I recalled myself cheerfully passing over dozens of consent forms without giving much thought to anything but science. I realized: I could not run away. With my signature, I officially became a study subject for the APHINITY trial.
My radiation oncologist was warm and kind, and informed me radiation therapy could begin three weeks after completion of six chemotherapy courses; as part of my ongoing treatment, I would continue on herceptin for a full year. This off‐hand comment made me feel as if the roof was collapsing over my head—herceptin brings with it the risk of many potent side effects, including some that wreak havoc with the heart. Although I’m certain I’d been told that herceptin therapy would last for one year, I’d simply missed this point because the anxiety of my diagnosis, tests and medical visits were too overwhelming to allow me to remember everything. This made me feel at once humbled and ashamed. I recalled getting irritated with patients who, after transplant, insisted I’d not adequately informed them of the side effects of anti‐rejection drugs. Of course I’d given them the information—repeatedly, and in great detail—but the patients’ memory had been dimmed by fear and anxiety. As a patient, I was now experiencing the same memory deficits, and for the same reasons. Chemotherapy convinced me I was trapped in my illness and I would never be myself again. I received chemotherapy six times every third Tuesday; by Friday, when the miraculous masking effects of dexamethazone wore off, I felt nauseous and thought everything tasted terrible; this was tolerable compared with the sensation of being at once so exhausted I could barely move and so anxious that lying in bed felt like an exquisite torture. Even when I began feeling better, usually shortly before the next chemotherapy “hit”, I continued to feel defective, broken and hopeless. An avid reader, I lost my yearning for books; a passionate traveler, I didn’t want to go anywhere; and, typically a smart dresser, I came to feel at ease in the same sweat suit day after day. This made me think of my patients again. When I followed the news of heart failure with instructions to take a boat‐load of medications, did I consider how those medicatons might
keep those patients from a beloved round of golf? When I recommended they be considered for heart transplantation or mechanical circulatory support, did I think about what this would mean for their quality of life? I’ve known and worked with Dr. Kathleen Grady for decades; while I’ve always been rationally aware of the value of her quality‐of‐life research, it took a life‐ threatening illness for me to emotionally grasp its critical importance for both patients and physicians. As if miraculously tuned into my emotional turmoil, two dear friends—Drs. Mariell Jessup and Mandeep Mehra—continued to send me work for the American Board of Internal Medicine and for the Journal of Heart and Lung Transplant. While these tasks at times seemed monumental, I understood how precious a gift this was: by sending me intellectual work, they were reassuring me I was the same person they’d known all along: cancer had not robbed me of who I am. I promised myself I would treasure this gift above all others and would do my best to pass it on to patients. Before my sixth treatment, my hemoglobin plunged to its nadir of 7.1 mg/dL and my iron stores grew greatly depleted. The Cancer Center encouraged me to begin oral iron supplementation. I insisted on receiving IV iron, because of the poor bioavailability and side effects of oral iron. I quickly realized how lucky I was to possess the medical knowledge to be my own healthcare advocate. I realized most of my patients are unaware of their medical choices and that, as a physician, I have the duty to provide patients with all tools necessary to make truly educated decisions, in spite of tremendous pressure on doctors to see more
patients in a shorter time. I’m living proof that informed patients enjoy better outcomes: after two iron infusions my hemoglobin quickly rose to 11.8 mg/dL. I returned to work 10 days after my last chemotherapy treatment; I arranged to have my 28 radiation therapy sessions at the end of each working day. By the time my husband brought me home after each session, I was so exhausted that even tumbling into the couch seemed a Herculean effort. However, during this time, when I was trying to work despite being in pain and exhausted, I learned one of the most important lessons of my medical career. Each patient I saw for the first time after my medical leave expressed relief I’d returned, because I’d played a critical role in their lives. I was pleased and stunned at the same time. I realized that we, as physicians, grossly underestimate the positive impact we have on patients’ lives. This alone should be a reward for our work; no other profession is endowed with such a precious gift. Undeniably, breast cancer is a life‐changing event; however, I’d never have predicted how it would change how I saw medicine, or how I would view patients moving forward. From now on, I will be more thoughtful about the effect so many tests and therapies may have on the lives of patients. I will also offer patients the utmost respect, especially when I place them in humiliating situations. I will never forget how illness attacks one’s sense of self, and I will be tireless in reminding patients they are whole human beings despite their illness. Little is more comforting to a patient than hearing her doctor’s voice; for this reason, I will endeavor to interact more directly with patients. The awareness I play an important role in each patient’s life will spur me to constantly improve not only my scientific knowledge, but also—and with
equal dedication—my human skills. I’ve seen both sides. Today, I believe I’m a better person. I know for certain I’m a better doctor. Acknowledgements: I wish to thank my patient Patricia Omara‐Croft and her husband Brian for their expert editorial help and my colleagues and staff for their loving support during my journey.
The physician becomes the patient: How my breast cancer journey taught me to be a better doctor Maria Rosa Costanzo M.D., F.A.C.C., F.A.H.A.
http://www.jhltonline.org
PII: DOI: Reference:
S1053-2498(14)01111-5 http://dx.doi.org/10.1016/j.healun.2014.04.013 HEALUN5758
To appear in:
J Heart Lung Transplant
Cite this article as: Maria Rosa Costanzo M.D., F.A.C.C., F.A.H.A., The physician becomes the patient: How my breast cancer journey taught me to be a better doctor, J Heart Lung Transplant, http://dx.doi.org/10.1016/j.healun.2014.04.013 This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting galley proof before it is published in its final citable form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
The physician becomes the patient: How my breast cancer journey taught me to be a better doctor Maria Rosa Costanzo, M.D., F.A.C.C., F.A.H.A.* *Midwest Heart Specialists‐Advocate Medical Group Address for Correspondence: Maria Rosa Costanzo, M.D., F.A.C.C., F.A.H.A. Edward Heart Hospital, Fourth Floor 801 South Washington Street, P.O. Box 3226 Naperville, Illinois, 60566 Telephone: 630‐527‐2730 Fax: 630‐281‐3226 E‐mail: [email protected] Lying on the exam table, eyes glued to the image of my right breast on the bedside monitor, I anticipated no life‐shaping lessons I’d soon learn about myself. No “eureka” discoveries about empathy, humility or patience jumped into my psyche. The small, solid and irregular mass just beneath the areola cared not at all that I was a busy doctor; unapologetically, it shared a simple and terrifying truth.
As a physician at the hospital, I was able to rush an ultrasound‐guided biopsy, pathology interpretation and analysis of tumor markers. The results revealed an invasive carcinoma, “triple positive” for estrogen, progesterone and the feared human epidermal factor receptor‐2 (HER‐2). While too frightened to consider the diagnosis in depth, I did reflect upon how most patients do not enjoy the advantage of such a rapid diagnosis and, once they receive it, are unable to absorb at once its full implications. I made a “note to self” that, after returning to work, I would become much more thorough in explaining diagnoses to patients, so that upon leaving my office they would hold more knowledge and less frightening uncertainty. In the weeks that followed my diagnosis, doctors’ visits, blood work and imaging tests became a whirlwind requiring the frequent help of my husband, sister and housekeeper. One day, while waiting for what seemed like a thousandth test, I recalled completing one patient’s office visit by nonchalantly ordering fasting blood work, an echocardiogram and a right heart catheterization, all to be completed before the next office appointment. Did I for a moment think about the anxiety my orders would spark, or the disruption such tests would cause in the life of my patient and her family members? I felt a prick of shame recalling my irritation toward patients who arrived at office visits without having completed all the tests I’d ordered. I didn’t know if they had a spouse, a friend or even a car to get them to appointments; I didn’t consider how some “routine” tests may make a patient feel scared or humiliated. I became acutely aware of the latter while lying face‐down on the MRI table, my breasts hanging indecently through the strategically located holes. No amount of professional success—no accolades or published research reports—could I wave in front of other doctors as a free pass to save myself from indignities so many patients had endured through the years. No advanced degrees could
save my breast; no keynote address could ensure I’d be spared further bad news. I wondered: had I ever taken seriously my patients’ complaints or anxieties as they laid on the catheterization table? I woke up from the mastectomy in room 513, a room in which I’d made frequent visits to inpatients. Tethered to the bed by the oxygen cannula, telemetry leads and two surgical drains, I felt utterly powerless. Going to the bathroom seemed an unattainable goal, until my sister grasped my predicament and called for help. The nurse spent several minutes freeing me from a tangle of wires and walked me to the bathroom without a moment to spare. As I was trying to urinate before a watchful audience, I first experienced a horrible feeling that would revisit me throughout cancer treatment: this illness was robbing me of who I was. I wondered if I could ever be the same. Propped once again in bed and reconnected to a sea of monitors, I thought of the scores of patients—of human beings—trapped in ICU beds, on ventilators, multiple IV drips, balloon pumps and cardiac assist devices. I wondered: as I patted myself on the back for saving others’ lives, did I ever truly reflect on how those therapies might affect patients’ humanity and sense of self? Did my patients, like me, wonder if they’d ever again be in control of their lives? The morning after I lost my breast, the oncologist informed me I had Stage II breast cancer, due to metastases in the sentinel and two additional lymphnodes. These tumors’ characteristics warranted both adjuvant chemotherapy and radiation therapy. I sat up in bed and asked the oncologist if he planned to use adriamycin, a frequent presence in breast cancer chemotherapy regimens, and was immensely relieved when he told me he did not. Early in my career, I’d
performed numerous cardiac biopsies on patients with adriamycin cardiotoxicity and had witnessed irreversible cardiomyopathy, in some cases severe enough to require heart transplantation. I became acutely aware of the mixed blessing of being simultaneously the doctor and the patient: you understand everything, and yet your medical training never lets you down easily; knowing every worst‐case scenario makes it all too easy to picture yourself enduring them all. After discharge, I realized how much cancer was sure to stand in the way of a busy life. With real sadness, I canceled speaking engagements and plans to attend meetings, including the 2013 ISHLT Scientific Sessions. Instead, I stayed back and tried to keep up with a relentless barrage of appointments. At one, my oncologist encouraged me to participate in the ongoing “A Study of Pertuzumab in Addition to Chemotherapy and Herceptin (Trastuzumab) as Adjuvant Therapy in Patients With HER2‐Positive Primary Breast Cancer” (APHINITY; NCT01358877), which would see
me receive taxotere, carboplatinum, and Herceptin, plus either pertuzumab or placebo. Wishing to practice what I’d long been preaching, I agreed to become a study subject. As I read the consent form, I became horrified by all the potential side effects: nausea, vomiting, alopecia, diarrhea, constipation, hypotension, leucopenia, thrombocytopenia, anemia and loss of fingernails. I, the heart disease expert, might even experience cardiac dysfunction and overt heart failure. Believing I would be beset by all of these adverse events, I felt a powerful urge to run away and refuse treatment. As I weighed my options, I recalled myself cheerfully passing over dozens of consent forms without giving much thought to anything but science. I realized: I could not run away. With my signature, I officially became a study subject for the APHINITY trial.
My radiation oncologist was warm and kind, and informed me radiation therapy could begin three weeks after completion of six chemotherapy courses; as part of my ongoing treatment, I would continue on herceptin for a full year. This off‐hand comment made me feel as if the roof was collapsing over my head—herceptin brings with it the risk of many potent side effects, including some that wreak havoc with the heart. Although I’m certain I’d been told that herceptin therapy would last for one year, I’d simply missed this point because the anxiety of my diagnosis, tests and medical visits were too overwhelming to allow me to remember everything. This made me feel at once humbled and ashamed. I recalled getting irritated with patients who, after transplant, insisted I’d not adequately informed them of the side effects of anti‐rejection drugs. Of course I’d given them the information—repeatedly, and in great detail—but the patients’ memory had been dimmed by fear and anxiety. As a patient, I was now experiencing the same memory deficits, and for the same reasons. Chemotherapy convinced me I was trapped in my illness and I would never be myself again. I received chemotherapy six times every third Tuesday; by Friday, when the miraculous masking effects of dexamethazone wore off, I felt nauseous and thought everything tasted terrible; this was tolerable compared with the sensation of being at once so exhausted I could barely move and so anxious that lying in bed felt like an exquisite torture. Even when I began feeling better, usually shortly before the next chemotherapy “hit”, I continued to feel defective, broken and hopeless. An avid reader, I lost my yearning for books; a passionate traveler, I didn’t want to go anywhere; and, typically a smart dresser, I came to feel at ease in the same sweat suit day after day. This made me think of my patients again. When I followed the news of heart failure with instructions to take a boat‐load of medications, did I consider how those medicatons might
keep those patients from a beloved round of golf? When I recommended they be considered for heart transplantation or mechanical circulatory support, did I think about what this would mean for their quality of life? I’ve known and worked with Dr. Kathleen Grady for decades; while I’ve always been rationally aware of the value of her quality‐of‐life research, it took a life‐ threatening illness for me to emotionally grasp its critical importance for both patients and physicians. As if miraculously tuned into my emotional turmoil, two dear friends—Drs. Mariell Jessup and Mandeep Mehra—continued to send me work for the American Board of Internal Medicine and for the Journal of Heart and Lung Transplant. While these tasks at times seemed monumental, I understood how precious a gift this was: by sending me intellectual work, they were reassuring me I was the same person they’d known all along: cancer had not robbed me of who I am. I promised myself I would treasure this gift above all others and would do my best to pass it on to patients. Before my sixth treatment, my hemoglobin plunged to its nadir of 7.1 mg/dL and my iron stores grew greatly depleted. The Cancer Center encouraged me to begin oral iron supplementation. I insisted on receiving IV iron, because of the poor bioavailability and side effects of oral iron. I quickly realized how lucky I was to possess the medical knowledge to be my own healthcare advocate. I realized most of my patients are unaware of their medical choices and that, as a physician, I have the duty to provide patients with all tools necessary to make truly educated decisions, in spite of tremendous pressure on doctors to see more
patients in a shorter time. I’m living proof that informed patients enjoy better outcomes: after two iron infusions my hemoglobin quickly rose to 11.8 mg/dL. I returned to work 10 days after my last chemotherapy treatment; I arranged to have my 28 radiation therapy sessions at the end of each working day. By the time my husband brought me home after each session, I was so exhausted that even tumbling into the couch seemed a Herculean effort. However, during this time, when I was trying to work despite being in pain and exhausted, I learned one of the most important lessons of my medical career. Each patient I saw for the first time after my medical leave expressed relief I’d returned, because I’d played a critical role in their lives. I was pleased and stunned at the same time. I realized that we, as physicians, grossly underestimate the positive impact we have on patients’ lives. This alone should be a reward for our work; no other profession is endowed with such a precious gift. Undeniably, breast cancer is a life‐changing event; however, I’d never have predicted how it would change how I saw medicine, or how I would view patients moving forward. From now on, I will be more thoughtful about the effect so many tests and therapies may have on the lives of patients. I will also offer patients the utmost respect, especially when I place them in humiliating situations. I will never forget how illness attacks one’s sense of self, and I will be tireless in reminding patients they are whole human beings despite their illness. Little is more comforting to a patient than hearing her doctor’s voice; for this reason, I will endeavor to interact more directly with patients. The awareness I play an important role in each patient’s life will spur me to constantly improve not only my scientific knowledge, but also—and with
equal dedication—my human skills. I’ve seen both sides. Today, I believe I’m a better person. I know for certain I’m a better doctor. Acknowledgements: I wish to thank my patient Patricia Omara‐Croft and her husband Brian for their expert editorial help and my colleagues and staff for their loving support during my journey.
