Lucy Frisch
Associate Publicist, Demos Health
11 West 42nd Street, 15th Floor
New York, NY 10036
(T) 212-804-6337
Having reviewed this book I found it amazingly helpful and full of sound, practical advise.
If you want a copy please contact Lucy (details above)
FORWARD…
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
Seattle, Washington
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