Saturday, 26 July 2014
Androgen Deprivation Therapy, all you need to know...
Associate Publicist, Demos Health
11 West 42nd Street, 15th Floor
New York, NY 10036
In the days before prostate-specific antigen (PSA) could be measured by a blood test, it was common for men to appear in the doctor’s office complaining about pain, which would turn out to be due to the spread of prostate cancer to their bones. The standard therapy at that time was orchiectomy, or surgical removal of the testicles. The testicles produce testosterone, a male hormone, or androgen, known to stimulate the growth of prostate cancer. In the early 1940s, this procedure had been shown to relieve pain due to metastatic prostate cancer, and thus became the “gold standard” for treating the disease. The early 1980s saw the approval of injectable drugs called gonadotropin- releasing hormone (GnRH, also called luteinizing hormone-releasing hormone, LHRH) analogs, which offered a much-needed alternative to the permanent orchiectomy. Since these drugs could turn off the testicular production of the androgen testosterone, the treatment was called androgen deprivation therapy (ADT). Many men opted for the drugs rather than orchiectomy. Soon after the GnRH analogs became available, the U.S. Food and Drug Administration (FDA) approved the PSA test. Over time, this test allowed us to find a whole new population of prostate cancer patients, namely, those men who had had surgery or radiation for localized prostate cancer and who now had a rising PSA measurement without any evidence of disease having spread to their bones or elsewhere. This condition is commonly called “biochemical relapse” because only the blood test indicates return of the cancer. Out of concern for the continuously rising PSA, we often started ADT, even though the men did not have any evidence of metastases. In most cases, ADT was very successful in bringing the PSA down to undetectable levels for long periods of time.
However, I began to hear from patients treated with ADT shots for biochemical relapse that they were feeling fatigued and experiencing a whole host of other symptoms. In the past, I had often encountered men with metastatic disease, who had either started the ADT injections or had had an orchiectomy, complain of fatigue. My naïve response was, “Of course you have some fatigue. You have metastatic prostate cancer.” But now a light bulb went off: the fatigue and other symptoms experienced by the biochemical relapse patients were from the ADT! Unlike the men I had encountered earlier in my practice, these men did not have metastases and had been feeling fine before the shots were started. Thus began an era of intense clinical research on the effects of ADT on the physiology, psychology, and cognitive functioning of men so treated.
The list of potential side effects of ADT is lengthy, and the list of different ways to address these side effects is even longer. Busy physicians may have only enough time to skim over these details, leaving the patient and his family unprepared for what to expect. In spite of our best efforts to educate patients and their partners about ADT, we often still feel we are not doing enough.
I met Richard Wassersug in 2006, when he came to Seattle for a visit. He was interested in intermittent ADT, and we met in a conference room with Monique Cherrier, PhD, my colleague who has collaborated with me in studying the effects of ADT on cognitive function. Dr. Wassersug explained that he was a scientist who primarily studied amphibian developmental biology, but, more importantly for our conversation, he was a man who had prostate cancer. As a scientist, he was a keen observer of the side effects of ADT and was also doing some laboratory and clinical research with colleagues in Halifax on the effects of ADT. Through research, personal observation, and staying in tune with men treated with ADT all over the world via Internet blogs and websites, Dr. Wassersug has accumulated a vast understanding of the side effects, how to explain them, and how to talk with men about dealing with them.
Around the same time as my meeting him, Dr. Wassersug sought out Dr. Robinson of the Tom Baker Cancer Centre. Soon they began collaborating. Dr. Robinson, a renowned psychosocial oncologist working with couples affected by cancer, clearly valued the dual perspective of Dr. Wassersug, the prostate cancer patient, and Dr. Wassersug, the research scientist.
Dr. Robinson and his then student, Lauren Walker, have since then been collaborating with Dr. Wassersug on various projects related to ADT. Dr. Wassersug found in Drs. Robinson and Walker specialized clinical skills, patient education expertise, and invaluable knowledge of a broad range of patient experiences. Equally passionate about improving the lives of men on ADT, these three individuals, plus other collaborators along the way, have significantly changed the ways in which patients are cared for while on ADT.
As a research team, Drs. Wassersug, Robinson, and Walker have found that patients and their partners remain poorly informed about the side effects of ADT. They established an ADT Working Group of about 20 professionals (i.e., researchers and clinicians) that make recommendations about the psychosocial care of men on ADT. Their research has demonstrated considerable variability in the information that health care professionals believe to be essential to provide to patients. As a team, Drs. Wassersug, Robinson, and Walker have worked to develop educational initiatives for patients, partners, and health care professionals, to help patients prepare for and manage the changes associated with ADT. This book is the culmination of several years of their work.
This book is different from consultations with specialists or conversations with nurses and doctors: it is something you can take home, read, and work on at your own pace, on your own time. You can read it in whatever order is of interest, skipping sections that may not be significant to you at this time, or going back and reviewing specific sections later. Importantly, this book emphasizes the impact of ADT on partners, so if you have one, it is highly recommended that you read it with him or her. It turns out that ADT can profoundly affect your relationships, so it is critical to address all parties concerned, not just the one receiving ADT.
This is not just a book that you read; it is a book that you do. It will serve as a reference and will complement whatever your medical team has taught you. It will allow you and your partner to better understand what is going on, and why, and it will help you to better deal with some of the side effects of ADT. It is a fantastic resource for patients and their families that is long overdue. As Sir Francis Bacon said in 1597, “knowledge is power.” Get going on doing this book, and in the process take back the power that prostate cancer has been stealing from you. You’ll be glad you did.
Celestia (Tia) Higano, MD
Professor, Medical Oncology Division
University of Washington, School of Medicine