Treater to Target: A Urologist's Personal Experience ... - Oxford Journals

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May 4, 2006 - Journal of the National Cancer Institute Monographs, No. 45, 2012. 143 ... J Natl Cancer Inst Monogr 2012;45:143–145. It is an axiom in ...
DOI:10.1093/jncimonographs/lgs027

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Treater to Target: A Urologist’s Personal Experience With Prostate Cancer Paul F. Schellhammer Correspondence to: Paul F. Schellhammer, MD, Department of Urology, Eastern Virginia Medical School, Norfolk, VA (e-mail: [email protected]).

J Natl Cancer Inst Monogr 2012;45:143–145

It is an axiom in medical education that case histories provide powerful opportunities to teach information gathering and application. Although a case history is most concerned with and centered on facts, these facts can be broadened and personalized by incorporating the patients’ views, reactions, and decision-making process and by telling the patients’ story. To this end, I  relate aspects of my own story. Although the characteristics of my cancer were not suitable for active surveillance, my reaction to a cancer diagnosis generally applies to any man who is told that he has prostate cancer. Surveillance is counterintuitive to a cancer diagnosis; changing the vocabulary associated with cancer may help a patient to understand and accept a strategy of withholding initial immediate therapy. First I’m going to ask the readers to engage their imagination regarding a 60-year-old man who, after his routine primary care physician exam, receives a call that a particular blood test, a prostate-specific antigen (PSA) test, is abnormal—we do not know whether the patient is aware that a PSA was drawn or of its purpose—what is known is that patients are often unaware of either. Better patient education and informed decision making are necessary to remedy this deficit. Let us now imagine the twinge of anxiety experienced by the patient who hears that it is necessary for him to see a subspecialist, a urologist, to discuss this test. The anxiety builds when the urologist informs him that a PSA elevation is a red flag for prostate cancer and that an invasive procedure, a biopsy of the prostate through the rectum, a very uncomfortable and dangerous-sounding procedure, is necessary as a next step to clarify the issue. Imagine the heightened anxiety after the biopsy is performed as the patient awaits the result. Finally, and for individuals who have not personally received a cancer diagnosis perhaps this may not be entirely possible, imagine the gut-wrenching visceral sensation that occurs when the patient receives the cancer diagnosis. I experienced this very same emotion and reaction upon learning of my diagnosis of prostate cancer in the year 2000 (1,2). Now you might ask why that might be—after all, as a urologist specializing in prostate cancer, I had the information to clarify the playing field, to cut through the uncertainty, and to choose a path that had been thoroughly and repeatedly analyzed in discussions with patients. Yes, I had expected the diagnosis of prostate cancer because of my PSA profile, but I also anticipated that any cancer detected would be the most common type that is diagnosed, one with a nonaggressive Gleason grade (3+3). However, when I  looked through the microscope, I confronted an aggressive Gleason patterns 4+4 and 4+5. I  vividly recall the empty feeling, the perspiration, dry mouth, and pounding in the temple, just as a patient might upon

hearing the word cancer, any cancer, for the first time—perhaps because I was a physician, the reaction may have been more intense because physicians have long and vivid memories of their patients’ illnesses, particularly those illnesses that are aggressive and rapidly progress through disability and death, despite the best efforts of the physician and patient. Human nature being what it is brings these images to the forefront. I have reflected on the intensity of my emotional reaction. In addition to prostate cancer, I have experienced the other common illness of the aging male: cardiovascular disease. The contrasting reactions to these illnesses that I  experienced might be considered quite illogical, but they are consistent with observations of and conversations with others within and outside the health-care field and are worth recounting. In 1998, I  experienced crushing chest pain due to a total occlusion of the left anterior descending coronary artery—an occlusion that has been given the ominous term “the widow maker.” I was fortunate to have immediate intervention and satisfactory recovery. I immediately established a partnership relationship with my ailing heart with a program of dietary modifications and exercise and embraced a plan to move forward optimistically for a long and healthy future. Contrast this with the diagnosis of prostate cancer, which filled me with a sense of anxiety, fear, and betrayal and the conviction that I needed to rid my body of the alien invader by whatever means. This, despite the fact that I was fully aware intellectually that the risks from cardiovascular disease, both with regard to disability and death, exceeded manyfold that of prostate cancer, even aggressive prostate cancer in the 5- and 10-year horizon. How the patient feels is often more powerful than what he knows and even more powerful than what his physician advises. Sir William Osler, the famed 19th-century Johns Hopkins physician, recognized this when he noted that it was more important to know about the patient who had a disease than about the disease the patient had. In the 21st century, we are fortunate to know much more about the diseases that affect us, but this knowledge should not discount or disqualify the patient’s emotional status. Back to our patient who, against this background of emotional upheaval, has gathered his family and significant others to consult with the urologist to guide him toward a treatment that will destroy the cancer and permit a return to life as it was. Now, imagine the reaction of the patient and his family when this new physician, the urologist, begins describing favorable characteristics of his cancer that permit a recommendation of no immediate therapy, and employing a strategy that he terms “active surveillance.”

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The urologist suggests the possibility of observing the cancer to determine its future rate of growth. This suggestion will generate a look of bewilderment from the patient and the family members present. They may look to the office wall for a medical diploma and certificate of specialization. The concept of favorable conditions associated with the word cancer is unknown and completely foreign to them. The only conditions that they associate with the word cancer are pain, suffering, and death. Cancer demands prompt action, not observation and delay—no time for a misstep, delay, or any kind of observation experiment here. When my diagnosis was made in the year 2000, I gave no thought to the idea of active surveillance. My high-grade Gleason score would not have been appropriate for active surveillance, but even if my biopsy had demonstrated a low Gleason score with favorable characteristics, I did not, at that time, consider surveillance. In the year 2000, the concept of active surveillance was still in early development, and the studies of Dr Klotz and Dr Carter and Dr Carroll, whose experiences are presented in this monograph, had not yet been presented or published. The no-treatment strategy that was and had been in practice for many years was termed “watchful waiting.” It is important to recognize the difference between the two concepts. Active surveillance and watchful waiting, although they are sometimes, incorrectly, used interchangeably, are very different approaches. Although there is no absolute verbiage by which each is defined, the overarching strategy of each can be stated as follows. Watchful waiting describes a strategy of nonintervention and minimal testing until the patient complains of symptoms, ie, urinary obstruction, pain, weight loss, and lethargy, and only then are measures instituted to relieve and palliate those symptoms. Active surveillance describes a prospective, proactive protocol to measure the pace of disease progression (or lack therefore) by regular monitoring of PSA and digital rectal exam and by interval biopsy and/or imaging of the prostate. Treatment with curative intent is instituted based on predefined changes in the monitoring tests. For some patients, treatment will be avoided entirely, and for others treatment will be delayed, with the advantage of preserving quality of life during that delay time. The world of cancer has developed its own vocabulary; certain words will arouse very dramatic and forceful emotions—these words matter to patients! The vocabulary of cancer, however, is not always applicable in the discussion of and development of an active surveillance protocol. These descriptive words are lost in translation. The vocabulary needs revision or at least modification. I focus on three of these words for which I believe this to be the case: cure, war, and survivor. The driving all-consuming priority of the cancer patient and family immediately turns to action to find a path to cure, the search for some procedure or drug that will eliminate the cancer, make it a thing of the past, a bad memory, and permit return of life as it was previously enjoyed. Active surveillance does not cure prostate cancer. It applies no intervention to alter the disease. However, when we learn that the word cure is derived From the Latin curare, meaning to care for, its applicability to active surveillance fits admirably. Active surveillance does require the physician, the health-care professional, to care for the patient, care to explain the natural history of low-grade prostate cancer, to explain the risk–benefit of the active surveillance approach, and to exercise care in careful 144

monitoring and follow-up for any alteration in disease characteristics that might change recommendations for management. When a patient hears the word “cancer,” he feels the need to put on battle gear and go to war against the enemy. I live in Hampton Roads, Virginia, an area steeped in military history. Although interesting and educational, the dominant theme of this history has revolved around war. Hampton Roads was the scene of the Revolutionary naval war Battle of the Capes, where the French fleet blockaded the English fleet at the mouth of the Chesapeake Bay, thus assuring George Washington’s victory at Yorktown and our independence. It was the scene of the famous Civil War Battle of the Ironclads, the Monitor and the Merrimack, which spelled the death knell of the wooden navy. It is the home of the battleship Wisconsin, the nuclear carriers of the Atlantic Fleet, and the American fighting spirit. The war metaphor has found its way into our everyday life, into business, politics, sports, and also into medicine. It became intimately entwined with the vocabulary of cancer when President Richard Nixon, upon signing the National Cancer Act of 1971, declared “war on cancer.” Wars, as we know too well, are exhausting and energy- and resource-depleting, and long wars all the more so. For a disease like prostate cancer, which has a natural history that spans decades, this warlike stance can be all-consuming, interfere with life’s pleasures and activities and do so to the detriment of quality of life. It can negate the opportunity to live well and long with prostate cancer. I borrow a phrase from Mukherjee’s The Emperor of All Maladies: A Biography of Cancer, wherein it is stated that the war on cancer may ultimately be won by redefining the meaning of victory (3). For some prostate cancers, this may involve negotiating a truce, making peace with the resident alien by instituting a regimen of active surveillance without initial therapy for as long as the cancer remains static and nonthreatening. Survivor is a term that flows naturally from the battle analogy. For the patient with cancer, as with the military soldier, survivor implies a personal victory. It carries an air of finality. For the medical community and the statistician, survivorship is a time-limited designation of being alive at predefined 3-, 5-, or 10-year intervals. For the patient following an active surveillance protocol, which is an ongoing process, I  believe that the appropriate descriptor to replace survivor is participant. The patient will need to adhere to a monitoring process, and he becomes a participant in that process. In fact, participant, in my mind, is very appropriate, as well, for the patient who has been actively treated for prostate cancer. Personally, I  consider myself a participant in the process of cancer therapy and follow-up, as evidenced by a number of therapies applied over the past decade ranging from surgery, radiation, intermittent and continuous hormone therapy, secondary hormone therapies, enrollment in clinical trials, and the necessity of participating in further therapies (4). Active surveillance is not neglect, and it is not withdrawal. It requires diligent monitoring, which requires participation and cooperation. I  therefore suggest that the lexicon of cancer be altered so as to be appropriate to describe active surveillance, where “care” replaces “cure,” “peace” replaces “war,” and “participant” replaces “survivor.” And also that less replaces more because less treatment or no treatment may be preferable. This has been a strategy applied to treatment for the most common cancer in Journal of the National Cancer Institute Monographs, No. 45, 2012

women, breast cancer, where extended radical mastectomy and lymph node dissection has been replaced by much less extensive surgical procedures. Randy Pausch, the Carnegie Mellon professor who was afflicted with pancreatic cancer and the author of Last Lecture, noted that individuals cannot determine the hand (disease process) they are dealt, but they can determine how they play that hand. He was dealt the hand of an aggressive and rapidly fatal pancreatic cancer; he dealt with that hand with an inspiring example of courage and love. Low-grade low-volume prostate cancer presents an entirely different biology and threat when compared with pancreatic cancer—it permits the hand of active surveillance to be played with favorable odds. To explain those thoughts, to establish a degree of comfort and equanimity for the patient with an active surveillance decision, will require all the counseling skills that a physician can exercise, both at diagnosis and at the follow-up intervals. Studies have suggested that this degree of objectivity may prove difficult (5). It will require reeducation of physicians, specifically urologic surgeons, so that they overcome educational/training prejudices and fairly inform patients of the concept of no immediate therapy and support the patient in that decision. The vocabulary of cancer also includes a term that physicians and scientists use to identify gaps in treatment protocols or pathways: “unmet need.” This conference presents the option of active surveillance to address this unmet need. The unmet need includes the education of the patient and family so that they are comfortable with the discussion and decision that some prostate cancers, yes, even though the word cancer is spoken, may best be initially managed with a

surveillance strategy rather than surgical or radiation or medicinal intervention. In conclusion, many prostate cancers are indolent and nonthreatening in the intermediate and long-term future. Prostate cancer is associated with slow attrition and in this way mimics the normal process of aging. Active surveillance may present a reasonable initial option, and patients will become participants in this process. In doing so, they can learn to live well, and hopefully long, with prostate cancer. References 1. Lange PH, Schellhammer PF. Views from the “other side”: personal reflections about prostate cancer from two urological oncologists. http://www.foundationforurologicalresearch.com/downloads/ViewsFromTheOtherSide. pdf. Published May 4, 2006. Accessed July 5, 2012. 2. Lange PH, Schellhamer PF. Reflections on prostate cancer: personal experiences of two urologic oncologists. In: Kirby RS, Partin AW, Feneley M, Parsons JK, eds. Prostate Cancer: Principles and Practice. London, UK: Taylor & Francis; 2006:617–624. 3. Mukherjee S. The Emperor of All Maladies: A Biography of Cancer. New York, NY: Scribner; 2010. 4. Schellhammer PF. Treater to target: experiences of a prostate cancer participant. In: Hemal AK, Menon M, eds. Robotics in Genitourinary Surgery. London, UK: Springer-Verlag; 2011:627–635. 5. Ubel PA, Angott AM, Zikmund-Fisher BJ. Physicians recommend different treatments for patients than they would choose for themselves. Arch Intern Med. 2011;171(7):630–634. Affiliations of author: Department of Urology, Eastern Virginia Medical School and Urology of Virginia, Norfolk, VA.

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