1. health and fitness
2. disease
3. cancer

2008
Summer
A quarterly newsletter courtesy of the
American Urological Association Foundation.
ADVOCACY
FROM PATIENT TO SURVIVOR:
Partner Spotlight:
Interstitial Cystitis
Association
How Prostate Cancer Turned One Man
into a Powerful Advocate
EDUCATION
Newsworthy Science:
Are Firefighters at a
Greater Risk of
Bladder Cancer?
Understanding Prostate
Cancer: An Interview with
Patrick C. Walsh, MD
REGULAR
FEATURES
My Side:
Hank Porterfield, Patient
Advocate and Prostate
Cancer Survivor
Donor Profile:
The Robert J. Krane, MD
Urology Research
Scholar Fund
News & Notes
Urology Health Extra is
published quarterly by the
American Urological
Association Foundation as
a service to patients,
physicians and the public. To
receive this free newsletter,
call 1-800-828-7866 or visit
www.AUAFoundation.org.
FROM THE EXECUTIVE DIRECTOR
Copyright © 2008
American Urological
Association Foundation
1000 Corporate Boulevard
Linthicum, MD 21090
Editor
Sandra Vassos, MPA
Associate Editor
Stephanie Chisolm, PhD
Managing Editor
Dear Reader,
Robert Robinson, MS
Contributing Writers
Hank Porterfield
Lacey Holt, MS
Editorial Board
Rodney Cotten
Leo Giambarresi, PhD
Debbie Goldstein, MBA
Heddy Hubbard, PhD, MPH,
RN, FAAN
Wendy Waldsachs Isett
Beth Kosiak, PhD
Peter Plourd, MBA, MS
Summer Sedlacek
For comprehensive urological
information, visit
www.UrologyHealth.org
The American Urological Association
Foundation believes the information in
this newsletter is as authoritative and
accurate as is reasonably possible and
that sources of information used in
preparation are reliable, but no assurance or warranty of completeness or
accuracy is intended or given, and all
warranties of any kind are disclaimed.
All articles in this newsletter have been
medically reviewed, but because every
patient is unique, personal questions
and concerns about any of the content
included here and its application to the
patient should be discussed with a
urologist. To locate a urologist in your
area, visit www.UrologyHealth.org/
find_urologist. The AUA Foundation has
no preference or bias concerning any
specific tests, products, procedures,
opinions or other information
mentioned herein.
2
The AUA Foundation is pleased to report that our inaugural redesigned issue of UrologyHealth Extra was
well received by our audiences, including patients and physicians. The new format is not only
visually appealing, but also the content has morphed into an assortment of useful information,
encompassing all areas of the Foundation’s activities.
This summer issue focuses on advocacy and the power of patient advocacy. Although urologic
conditions affect an astounding portion of our population, urologic health has yet to find its way to the
forefront of public health issues in America. Often endured in silence, urologic conditions are
affecting individuals from all walks of life and costing the healthcare system billions of dollars a year
to treat. The Foundation endeavors to be a common platform on which to unite the voices of hundreds
of urologic disease-specific non profits, raising this unified voice to help move important legislation
forward and advancing urologic patient care.
Despite the fact that millions of people suffer from common urologic conditions, whose treatments place
a substantial strain on our healthcare system, funding for urologic research lags far behind that
of other health issues in the United States. The only way we can progress toward the highest-quality
prevention, detection and treatment of urologic diseases is to ensure that urology has a powerful voice in
federal government and a prominent position in the minds of the public.
One step toward that goal involves the creation of a urology branch at the National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK), a division of the National Institutes of Health.
The AUA and the AUA Foundation have been instrumental in advocating for this change. If successful,
we will have a designated leader at NIDDK to oversee federal urologic research, thereby allowing for a comprehensive approach to research into urologic conditions, even as they relate to other diseases and disorders
affecting people from all walks of life. This, along with strategic partnerships between other mission-oriented organizations, will be a major step in advancing the awareness of urologic conditions in the United
States. We will keep you posted on our progress.
Wishing you all the best,
Sandra Vassos, MPA
Executive Director
RESEARCH
Newsworthy Science
The Annual Scientific Meeting of the American Urological Association (AUA) is the largest
gathering of urologic health professionals in the world. Each year, leading researchers gather
to present and share new data on urologic conditions and treatments, and the 2008 meeting
in Orlando offered more scientific research than ever. A number of these major studies made
national headlines.
Firefighters: Increased
Bladder Cancer Risk?
Exposure to fumes and toxins may
put firefighters at an increased risk of
contracting bladder cancer, according
to new research from the University of
California, San Francisco. Researchers
concluded that lifetime firefighters may
be at a higher risk of developing bladder cancer than the general public and
should be considered for regular
screening.
Lower Urinary Tract Symptoms Place
Elderly Men at Risk for Falls
Elderly men with lower urinary tract symptoms may be at an increased risk of a fall, a common cause of morbidity in the older population. Researchers found that elderly men who experience urgency, nocturia (urinating at least twice at night), frequent urination, or the need
to push or strain to urinate were more likely to fall twice during a year than those who do
not have urinary problems. Elderly men and their caregivers should be aware of this risk and
discuss symptoms with their doctors. It may also be advantageous to take additional steps
to manage symptoms (keeping a voiding diary, limiting fluid intake prior to bedtime) and
eliminate possible obstacles to the bathroom.
Experts Define Premature Ejaculation
Sexual Function May
Improve with Weight Loss
in Obese Patients
Weight loss could improve sexual function,
according to a new study from researchers in
Boston and Philadelphia. After gastric
bypass surgery, obese men reported having a
more pleasurable sex life. The amount
of weight loss predicted the degree of
improvement in sexual function.
Kidney Stones May
Indicate Metabolic
Syndrome Disorders
The pain of a kidney stone may also serve as
an alert to a bigger health problem,
according to new research from Japan.
Patients with metabolic syndrome
disorders, including diabetes and high
cholesterol, are more likely to develop
uric-acid stones than other type of calculi;
this suggests that patients who present with
this particular type of stone could benefit
from additional health screenings to see if
they also have a not-yet-diagnosed metabolic syndrome disorder. ❉
For more information about these studies, please visit www.AUAnet.org/media
for the complete press releases.
Experts from the International Society for Sexual Medicine (ISSM) have reached a consensus
definition for premature ejaculation (PE) that may enable physicians to better recognize and
treat this condition. The ISSM defines PE as “a male sexual dysfunction characterized by ejaculation which always or nearly always occurs prior to or within about one minute of vaginal
penetration; and, inability to delay ejaculation on all or nearly all vaginal penetrations and,
negative personal consequences, such as distress, bother, frustration and/or the avoidance
of sexual intimacy.”
FOR MORE INFORMATION:
www.UrologyHealth.org
3
COVER STORY/ADVOCACY
FROM
PATIENT TO
SURVIVOR:
HOW PROSTATE
CANCER TURNED
ONE MAN INTO A
POWERFUL ADVOCATE
Robert Robinson, AUA
James Girand, a world-class duathlete, is no stranger to hard work and
determination. But, on August 10, 2006, a biopsy revealed a malignant
tumor in his prostate. Girand was used to battling the heat and hills of
desert highways, but suddenly found himself in a race against a disease
that he barely knew anything about. “In a race, there are lots of unknowns. You don’t know about your competition and how your body
is going to respond,” said Girand. “There is a lot of uncertainty about
how you are going to perform and dealing with prostate cancer was James Girand
the same.”
After years of monitoring his prostate-specific antigen (PSA) level regularly and keeping his
body in admirable physical shape, Girand had prostate cancer and now found himself surrounded by unanswered questions. “I knew vaguely what it was and my first urologist wasn’t
very experienced in prostate cancer so I had to take it upon myself to seek information,” he
said.
He wasn’t alone in his quest to learn more about his disease. He was surrounded by a support
group that included his wife of 48 years, Juanita, his three daughters Laurie, Juanita Anne
and Lisa, as well as his seven grandchildren: Anna, Connor, Liam, Ryan, Bryn, Campbell and
Aili.
“This would have been very difficult to go through alone,” said Girand. “I had my family and
I could reach out to them in those dark moments. There will always be ups and downs, but
with strong family support I could reflect on things more easily and it helped me make better
decisions.”
4
Never one to back away from a challenge, Girand, along with his family, began a quest to
learn as much about his prostate cancer as
possible. “It was very difficult to slow down
but I found out that I didn’t have to do something that day. I turned into an active, productive, knowledge-acquisition machine.”
Although his family played an active role in
helping to understand his disease, Girand
knew that his grandchildren were likely best
kept shielded from the fact that what he was
going through could threaten his life. “The
kids were old enough to understand that
there was a problem,” said Girand. “They knew
that Grandpa was sick and that he needed an
operation.”
COVER STORY
He credits his competitive nature for helping him to see through the murky waters of his cancer and finding the information that would eventually lead him to an effective treatment and
recovery. “I’ve always been a competitive person,” said Girand. “I wrestled in college and that
was the ultimate competition, having to go one on one and trying to be victorious.”
Girand even keeps a quote from Theodore Roosevelt in his pocket to remind himself of what
it takes to remain driven toward success: “Far better is it to dare mighty things, to win glorious
triumphs, even though checkered by failure … than to rank with those poor spirits who neither enjoy nor suffer much, because they live in a gray twilight that knows not victory nor
defeat.”
That passage speaks volumes about the type of person Girand is. He simply refuses to give
up. Even when the odds are stacked against him, the athlete — the man whose very breath
fuels a competitive fire within him — doesn’t back down. He’d rather fight than surrender,
without knowing how he measured up. Perhaps that’s the reason why, at the age of 71, he’ll
be competing in his 18th consecutive World Duathlon Championship this fall in Italy—the
longest consecutive streak in the world. The streak, Girand realizes, could have ended if he
wasn’t diligent about dealing with his cancer.
“When I was first diagnosed my urologist told me that I should have a prostatectomy and
that I would probably have issues with continence, and potency, and that I should have some
blood stored and this is what I thought I had in store for me for the rest of my life,” he said.
So instead of globetrotting and spending countless hours training for competition, Girand
could have accepted that he would be incontinent and physically unable to perform at the
same elite level that had earned him so many victories. Instead, Girand began a quest for
knowledge to ensure that he knew as mush as he could about his disease. He showed that
when the maze has moving walls, you climb them.
“There was this great vacuum of knowledge and part of my quest was to learn more by reading books and articles written by leading urologists,” said Girand. It was during this search
that Girand encountered several urologists and began asking questions and gathering more
and more information about his specific condition. This process led him to Peter R. Carroll,
MD, a leading urologist specializing in the treatment of prostate cancer and the chair of
urology at the University of California, San Francisco (UCSF).
Girand was immediately impressed with Dr. Carroll’s expertise and the manner in which he
took the time to explain his treatment options, but also, Girand found that they had a unique
bond. “We immediately developed a great rapport because we are both cyclists,” said Girand.
“There was a personal bond between us which is important to me and then I saw the amount
of energy at UCSF and how many people were there to work with Dr. Carroll. I knew that this
is where I wanted to be treated.”
On October 26, 2006, Girand had his prostate removed at UCSF and, within hours after the
surgery, he was walking again. Two days later he returned home and within weeks was running and, after three months, biking again. On February 25, 2007, only four months removed
from surgery, Girand placed first in his age group at the Desert Duathlon. He could have
taken a vacation or rested comfortably at home, but he was back on the road, pounding the
pavement, spending more time on the bicycle seat than the couch. He kept competing and
winning, fueled by the same competitive fire that helped him conquer his cancer. “I was a man
possessed. I wanted to recover quickly and validate my decision to have the operation. I
wanted to show I was a survivor and Dr. Carroll encouraged me to do that.”
Peter R. Carroll, MD
More about
Peter R. Carroll, MD
Dr. Peter Carroll, co-director of Urologic
Cancer at the UCSF Helen Diller Family
Comprehensive Cancer Center and chair of
Urology at UCSF, is an expert in managing
urologic cancers. His areas of interest include innovative methods of urinary tract
reconstruction and the impact of cancer
detection and treatment on quality of life.
Dr. Carroll has authored hundreds of publications, serves as associate editor of The
Journal of Urology® and plays a key role in
other journals. He graduated with honors
from Georgetown University School of
Medicine and came to UCSF for general
surgery training and a urology residency.
“People like James do
well because they are
driven and have the
resources, leaving no
stone unturned as they
negotiate this disease.”
- Dr. Carroll
Continued on next page ➻
5
COVER STORY/ADVOCACY
in presentation, treatment and understanding
of prostate cancer and we need to go out into
the community and reduce these disparities.”
Prostate cancer, which can range from fast
progressing and life threatening to idle and
often only moderately harmful to a man’s
longevity, is always a unique case, depending
upon a variety of factors. “Patients get lost
because prostate cancer is a spectrum disease
not only defined by the disease itself but also
by the individual who has the disease,” said
Dr. Carroll. “They read endless testimony
about things that may or may not be related
to them and seeing the trees through the forest becomes very important because they
often see one disease when in fact it is not
one disease.”
Jamesd Girand and his granddaughter, Anna.
In the aftermath of his ordeal, Girand has found a way to offer support to other men who
find themselves lost amidst the myths and misinformation surrounding prostate cancer. In
March 2007, he created a Web site: www.prostatecancerpatients.org. Girand wanted to not
only tell his story, but also guide men toward the information that would help them navigate
this disease. “The whole topic can be like a dark side to men,” said Girand. “Most men do not
feel comfortable talking about issues of continence and potency. There is this desire to stay
anonymous — and I decided that discussing these issues was perhaps the best way for me
to help other people.”
Now, visitors to his site, the hundreds that he receives each month, benefit from his experience and from the realization that there are answers and options that they can relate to
their disease. “I found that information truly empowered me. There is too much ambiguity
about this disease to simply go to a single physician and assume that is the best you can do.
Men need to take that responsibility themselves.”
Dr. Carroll, who sees a vast number of patients with prostate cancer annually, realizes that
powerful patients often have the best outcomes. “People like James do well because they are
driven and have the resources, leaving no stone unturned as they negotiate this disease. Unfortunately a lot of men do not have this capability,” said Dr. Carroll. “There are huge disparities
More about James Girand
James Girand is an internationally competitive duathlete. He was selected by Inside Triathlon
magazine as an age group All American each year from 1993 through 2005.
In 2007, Girand won a silver medal at the World Long Course Duathlon Championship
held in Richmond. Girand resides in Palo Alto, CA with his wife Juanita and runs
Technology Strategies & Investments, a consulting firm specializing in strategic sales
and marketing across a variety of technology-driven businesses. He is the founder of
the Prostate Cancer Patients Network and can be contacted via his Web site,
www.prostatecancerpatients.org.
6
Dr. Carroll insists that information can become a powerful ally for men who find themselves in Girand’s position, especially given
the vast amount of misinformation that exists. “It becomes hard for people to understand risk because they want to know if their
cancer is like somebody else’s cancer when in
fact it could be quite different,” said Dr. Carroll. ”People’s preferences need to be taken
into account. Doing the right thing at the
right time for the right person is why patients
need to be armed with the right knowledge.”
Both Girand and Dr. Carroll realize that a
physician/patient relationship is not one that
ends with recovery, but one that endures. “My
treatment was not a transaction; it was the
beginning of a relationship,” said Girand. Dr.
Carroll advises patients to look at their
healthcare options as a means to developing
future outcomes, not just immediate results.
“When people choose an environment for
their healthcare, they need to look at a longterm commitment. We can’t underestimate
the need to manage patients during illness
and in survivorship.”
The bond formed between him and Dr. Carroll
played an important role in Girand’s determination to get past the disease and return to
life as he knows it. Upon recovery from his
COVER STORY
Girand and his wife, Juanita.
surgery, Dr. Carroll and his team presented Girand with a UCSF racing jersey, and attached was
a simple note:
“The deal is you’re given this jersey to ride!
No coasting allowed.”
And that’s exactly what he’s done. He doesn’t stop pedaling. Not when he was diagnosed
with a dreaded disease and not when all doors seemed to lead to nowhere. With his cancer
treatment behind him, Girand need only focus on the many finish lines that lie ahead, even
if he knows that his cancer could creep up on him at any time. “It always hangs over me,
and as each test goes by, my confidence level grows,” said Girand. “Life is to be lived and you
go forward and celebrate the successes by living each day the best you can. You wake up
with a smile on your face because you’re alive, cancer free and there is still so much in front
of you.” ❉
Girand was silver medalist at the 2007 World
Duathlon Championship.
“ . . . with strong
family support I
could reflect on
things more easily
and it helped me
make better
decisions.”
Send us your Story
The AUA Foundation’s advocacy efforts depend largely upon the active participation of individuals who have been directly affected by
urologic conditions. Increased awareness and understanding of urologic conditions will help in our mission to increase research funds
directed toward improving the quality of care and the ability to prevent and detect urologic disease. As a patient or a loved one of
someone who has battled a urologic condition, you can help us advocate for improvements to overall urologic health. Your story can
help us spread the word about the effect that urologic health can have on both quality of life and longevity. As we partner with other
organizations that share our goal, we will count on you as part of an amplified voice, pressing policy makers to place a greater emphasis
on the access to quality treatments and an increase in funds to allow researchers to make valuable advancements in our understanding
of urologic health.
If you have a story to share, please e-mail [email protected] or call 800-828-7866. You may choose to remain anonymous and your privacy will be safely maintained. Help us help others by spreading the word about urologic health. Your story
can make a difference!
7
ensure third-party payors and Social Security
recognize the disease and its severity, develop
a diagnostic test, and accelerate research to
find effective treatments and, ultimately, a
cure.
ADVOCACY
PARTNER
SPOTLIGHT:
How much has the understanding of IC, both in the
medical field and in the
general public changed over
the years?
Interstitial
Cystitis
Association
ICA Executive Director, Barbara Gordon
Founded in 1984 by Vicki Ratner, MD, the Interstitial Cystitis Association (ICA) is the first and
largest national nonprofit organization to work on behalf of interstitial cystitis (IC) patients.
The ICA's advocacy has helped to ensure that the United States has a strong IC research
agenda. UrologyHealth Extra recently sat down with ICA Executive Director Barbara Gordon
to discuss the organization’s mission and reflect upon its progress.
IC went from being thought of as a psychological condition to being recognized as a legitimate, serious medical condition. Our
outreach efforts have brought better public
awareness, but we recognize that we must
expand our reach to educate across medical
specialties, as well as continue to educate the
public.
The ICA works to improve the lives of people living with a disabling, chronic medical condition.
We provide comprehensive and up-to-date information to the public, offer support to people
living with IC, educate the medical community, advocate for federal research dollars and
fund research ourselves to find effective treatments and a cure for IC.
The ICA provides a toll-free information
service for people with IC and for healthcare
professionals and individual support through
its Web site and National Patient Support
Advocates around the country. To learn more,
visit www.ichelp.org or call 1-800-HELP-ICA
(1-800-435-7422). ❉
How does the ICA advocate for increased awareness and
understanding of IC?
About Interstitial Cystitis
What does the ICA do?
We reach out to the lay press, medical and research communities as well as policymakers. In
the last year, funding from the Centers for Disease Control and Prevention (CDC) supported
a media tour with health magazine editors, writers and publishers. We also recently collaborated with the Association of Reproductive Health Professionals (ARHP) to educate healthcare providers about IC. The Multidisciplinary Approach to the Study of Chronic Pelvic Pain
(MAPP) Research Network sponsored by the National Institutes of Health (NIH) is a direct result of ICA advocacy efforts.
What are some of the biggest successes the organization
has experienced?
We have helped change the medical perception of IC, from a hysterical condition of white
post-menopausal women to a physical disease that affects all ages, races and both sexes. We
have encouraged physicians to become experts in treating IC and have persuaded funders
to devote resources to IC research. That has given hope to countless people with IC around
the world.
What is the one great challenge facing the organization
today?
Ensuring that every person with IC has access to timely, effective and compassionate treatment. To achieve that, we need to continue to increase public awareness, educate providers,
8
Interstitial cystitis (IC), also known as painful
bladder syndrome (PBS), affects more than
one million people of all ages, genders, races
and ethnicities. Although the cause of IC is
unknown and there is no cure, there are treatment options to help relieve symptoms.
Many people with IC:
• have to urinate so frequently they cannot
work, sleep or even leave home
• feel like shards of glass are being ground
into their bladder, or a lit match or hot
poker is being placed up into their
bladder
• cannot eat or drink many common foods
and beverages because they provoke
those symptoms
• have a deep, aching pelvic pain that
worsens with exercise and sex
FEATURES
DONOR
PROFILE
HIGHLIGHTING THE
ROBERT J. KRANE, MD,
UROLOGY RESEARCH
SCHOLAR FUND
Robert J. Krane, MD,
with his wife, Diane
When her husband passed away in November, 2001, Diane Krane found herself searching for
a way to honor him. In the fall of 2003, she decided that starting a scholarship to fund research in urology was the best way to memorialize her husband, a man who had spent much
of his career making advancements in urologic care. With her initial pledge to the AUA Foundation, the Robert J. Krane, MD, Urology Research Scholar Fund was created. Once fully endowed, the fund will support the work of valuable research efforts in the areas of sexual
medicine and neurourology.
“My husband had such a big personality and his colleagues were very supportive of this
idea,” said Krane. “He was taken away at a critical time in his career and this is the best way
to keep his memory alive.”
Those who knew Dr. Krane best agree that advancing his ideals and making further contributions to urology are the best way to honor his legacy. “This was central to his life and his
work. He was devoted to his field and to the idea of leaving it better than he found it,“ said
Mike Siroky, MD, a friend and colleague. “He contributed in so many ways — mentoring, lecturing, teaching and through his own research. Having a fund that would enable talented
people to continue his work would have meant a lot to him.”
Robert J. Krane, MD
Among his many accomplishments, including
having authored over 150 peer reviewed articles, and editing or co-editing 14 text books,
his research accomplishments were recognized in 1983 when he received the prestigious Gold Cystoscope Award from the
American Urological Association. A skilled
speaker, Dr. Krane lectured throughout the
world. His ability to express his enthusiasm,
energy and sense of humor were truly remarkable. Through his charismatic leadership,
hundreds of students, residents and fellows
were directed into outstanding careers in
urology as the result of his example, guidance
and instruction. ❉
About Robert J. Krane, MD
Through his writing and teaching, Robert J. Krane, MD, helped to establish the field of
neurourology. His significant contributions to many other areas of urology, especially erectile dysfunction, made him an internationally recognized leader in these fields. He was appointed as Chairman of the Department of Urology at Boston University (BU) Hospital in
1980 at the age of 37. He served as chairman at BU until 1998 when he joined the Urology
Department at Massachusetts General Hospital as Director of Neurourology and was appointed Professor of Surgery at Harvard Medical School.
Donations to the Robert J. Krane, MD,
Urology Research Scholar Fund, as well as
other methods of supporting the vital
work of the AUA Foundation, can be made
at www.AUAFoundation.org.
9
EDUCATION
Q&A
WITH PATRICK
C. WALSH, MD
PIONEERING PROSTATE
CANCER SURGEON,
JOHNS HOPKINS MEDICINE
exam. Of the patients who were candidates
for radical prostatectomy, most were not offered [this option] because surgeons were
afraid of the bleeding and patients did not
want to end up impotent or incontinent. In
1983, only 7 percent of men with localized
prostate cancer underwent surgery, but by
1993, more than 30 percent underwent
prostatectomy.
What led to this change?
Patrick C. Walsh, MD
UNDERSTANDING PROSTATE CANCER
Patrick C. Walsh, MD, is one of the world’s foremost authorities on prostate cancer and is currently the Distinguished Service Professor of Urology at the Brady Urological Institute of
Johns Hopkins Medicine in Baltimore, MD. He is best known for his pioneering work in the
development of “the anatomic approach to radical prostatectomy,” which involves nervesparing techniques that have reduced the probability of impotence and incontinence. Walsh
was honored as the 2007 National Physician of the Year for Clinical Excellence by America’s
Top Doctors®, and was the co-recipient of the 2007 King Faisal International Prize in Medicine.
He is also the recipient of the Eugene Fuller Triennial and Ramon Guiteras awards from the
American Urological Association.
With Prostate Cancer Awareness Month coming in September, UrologyHealth Extra
Managing Editor Robert Robinson sat down with Patrick C. Walsh, MD, to discuss current issues in prostate cancer prevention and treatment.
What is the most significant change in the treatment of
prostate cancer that you have witnessed?
Twenty-five years ago, most men who were diagnosed with prostate cancer were incurable
and, of the men that were curable, most men did not receive curative therapy. The only way
you diagnosed the disease was by having someone come in with symptoms of bone pain,
problems with urination or the presence of a large lump detected through a digital rectal
10
Management of prostate cancer has been revolutionized by two things: the development
of surgery where there was less bleeding with
the possibility to reserve potency and improve
urinary control and prostate-specific antigen
(PSA) testing, which allowed us to diagnose
men at a curable stage. By 1993, 100,000 men
were undergoing radical prostatectomy and
we were suddenly treating men who were
curable with an effective form of treatment.
Within 10 years, deaths from prostate cancer
fell 33 percent. That has been a real success
story, but the downside is that more men who
will probably never succumb to prostate cancer are being diagnosed and treated and there
are side effects associated with all treatments.
What makes prostate cancer
unique?
It is the cancer that occurs most commonly
with aging. It is a very common disease, although many men who develop it will often
die of something else before prostate cancer.
That is what makes it a tricky disease.
Prostate cancer can lead to a painful death;
it breaks down your bones and you die in
pain.
EDUCATION
As urology leads the way in treating
prostate cancer, how have newer forms of
treatments found their way to patients?
One thing that is very nice is that, as we raise the bar, everyone else
has to come to that bar. When surgery was the only option, every
man was impotent and incontinent. Then radiation came along, and
the bar is constantly being raised. When competitive forms of treatment come along, the field of urology and the patients are better
for it.
What should a prostate cancer patient look
for in a urologist?
They need to see an expert. At a minimum, they should see a urologist and a radiation oncologist. You want to see an expert who encourages you to explore your options and you want to become well
informed. That can be tricky, as many Internet sites are sponsored by
somebody who wants to sell you something. They should gather information that spells out their options and find a doctor that they
trust the most and put their faith in that person’s hands. If you have
an operation, you want someone who is the best at it. Prostatectomy
is an unforgiving operation if it’s not done by the right person and,
with all of the emphasis on robotics today, it’s not the robot — but the
person behind the robot — that matters.
Knowing that it is important for patients
to seek multiple opinions, how often do
you direct prostate cancer patients toward
a non-surgical option?
All the time. I’m a prostate cancer doctor and I do what is best for
the patient. I offer expectant management if they are candidates,
and tell patients to have radiation therapy, and talk them out of sur- Patrick C. Walsh, MD performing surgery at Johns Hopkins
gery. Or, I tell people that surgery may be the best option for them,
be if they are incontinent? I have seen a lot of
when appropriate.
patients who, in their enthusiasm to do
something, have done things that are not
What type of patient should seek surgery as an option?
best for them.
A candidate for surgery is a patient who is curable and is going to live long enough to need
to be cured. After 65-70, most prostate cancer patients aren’t going to live long enough to
Is the problem of prostate
be cured, so radiation therapy is an excellent option with fewer side effects.
Do you receive a lot of resistance from men who think
that simply removing their prostate is the best way to treat
the cancer?
I do, and you have to counter that with facts. You listen and talk to them. You explain that
the amount of cancer in their prostate is very small, and that amount, if we didn’t treat it,
would not affect them in their lifetime. They say they are very active, but how active can they
FOR MORE INFORMATION:
www.UrologyHealth.org
cancer going to get worse
before it gets better?
We have the baby boomers that include 78
million men and women who just turned 60
in 2006. We are going to have so many more
men entering this risk category and unless we
come up with a better way to prevent this
disease, there will be twice as many new
cases over the next 25-40 years and there
could be more deaths unless we find a better
way to cure it. ❉
11
FEATURES
NEWS & NOTES
AUA Foundation Hosts
First Annual Patient
Advocacy Summit
On March 31, 2008, the AUA Foundation hosted its first annual Patient Advocacy Summit in conjunction with the AUA’s Joint Advocacy
Conference, bringing together 21 patient advocates from 14 different
organizations. Held in Washington, DC, the meeting was the first
step in establishing a plan for urology health advocacy groups to
identify common priorities and challenges, along with opportunities
for the groups to work together to enact change. Patient advocacy
groups play the ever-important role of increasing awareness of patient health issues and sharing the challenges of patients coping
with illness with the goal of changing perceptions of disease and, as
a result, influencing public policy in a way that benefits patients. Despite the fact that there are many patient advocacy organizations in
the urology community, awareness of urologic health and funding
for research is lagging. United advocacy efforts will create a focused,
single voice for change. The Foundation looks forward to working
with other organizations that share its mission.
Among the groups represented at the
summit were:
•
•
•
•
•
The National Association for Continence www.nafc.org 1-800-BLADDER
Howard University Cancer Center http://cancer.howard.edu 202-806-7697
American Prostate Society www.americanprostatesociety.com 410-859-3735
Interstitial Cystitis Association www.ichelp.org 1-800-HELP-ICA
National Prostate Cancer Coalition www.fightprostatecancer.org
1- 888-245-9455
• Society for Women’s Health Research www.womenshealthresearch.org
202-223-8224
• The Prostate Cancer Prevention Project
www.prostatecancerpreventionproject.org
• The Women’s Health Foundation www.womenshealthfoundation.org
773-305-8200
• Bladder Cancer Advocacy Network www.bcan.org 1-888-901-BCAN
• Men’s Health Network www.menshealthnetwork.org 202-543-MHN-1
• National Alliance of State Prostate Cancer Coalitions
www.naspcc.org 858-459-0631
• Prostate Cancer Education Council www.pcaw.org 1- 866-477-6788
• The Simon Foundation for Continence www.simonfoundation.org
1-800-23-SIMON
• Prostate Health Education Network www.prostatehealthed.org
781-487-2239
• The Prostate Net www.prostate-online.com 1-888-477-6763
12
Attendees at the AUA Foundation Patient Advocacy Summit
2008 Walk. Run. Win. in Orlando Sets
New Records
The 2008 Walk. Run. Win.
TOGETHER Against Prostate, Kidney,
and Bladder Cancers was held on
May 17, 2008 in conjunction with
the 2008 AUA Annual Meeting in
Orlando, FL. The event was a rousing
success, with nearly 450 registered
Former AUA President Lawrence
participants — a new record for this S. Ross, MD, with individual
annual event. A record number of female race winner Mary Pardi
eight teams participated, and
corporate and individual donations were at a record level of more than
$78,000. Proceeds from the event will be used to support
research into prostate, bladder and kidney cancer through the
AUA Foundation.
AUA Foundation Receives $50,000 from
“BPH Boys” Promotion
The Foundation was the proud
recipient of a $50,000 donation from pharmaceutical
company Boehringer Ingelheim (BI), as part of their “BPH
Boys” adventure promotion
and in support of the
Foundation’s work. Earlier this
year, BI gave urologists the opportunity to participate in the
AUA Foundation Executive Director
Sandra Vassos poses with the “BPH Boys” promotion by voting for the
“BPH Boys” next destination. For each vote received, BI donated $2 to
the AUA Foundation. The company also contributed 10 cents for every
step logged by runners from the FLOMAX team during the Walk. Run.
Win. event. The proceeds will be used to fund the Foundation’s research,
education and advocacy programs.
FEATURES
Community Cross Training Educates Local Healthcare
Professionals
The first Community Cross Training in
Urologic Wellness was held in Orlando, FL on
May 20, 2008, bringing together 66 community leaders, healthcare workers and
caregivers. A second training was held in
Baltimore, MD, on July 23. The goal of the
Community Cross Training events is to improve the urologic health of community residents by training community leaders to
educate and refer residents to the appropriate urologic care and/or resources and services. For more information about the events,
contact [email protected].
Top: Participants in the first Community
Cross Training on Urologic Wellness in
Orlando, FL.
National Prostate Health
Month Quickly Approaching
Did you know that September is National
Prostate Health Month? September was first
designated National Prostate Health Month
in 1999 by the American Foundation for Urological Disease (AFUD), now the AUA Foundation. We will be conducting several events
and programs during the month of September and want men — fathers, brothers, uncles
and sons — to stay healthy by becoming educated about their prostates. In addition to
the Great Prostate Cancer Challenge and our
Webinars, we also have educational products,
including a new DVD titled, “Expert Advice
about Prostate Cancer: Understanding Your
Diagnosis and Treatment Options.” ❉
For a free copy of this DVD, call
1-866-RING-AUA.
Left: AUA Foundation Director of Patient
Education Stephanie Chisolm, PhD,
addressed participants at the Community
Cross Training event in Florida.
Calendar of Events
AARP Life @ 50+
AUA Foundation Webinars
September 4-6, 2008, Washington
Convention Center, Washington, DC
The AUA Foundation will be exhibiting at this annual event, attended
by more than 30,000 people. This is an opportunity for the Foundation to reach out to the public and educate them on the many urologic health issues that affect their quality of life.
Prostate Cancer Prevention: 8/19/08, 8:00-9:30 p.m. EDT
Prostatitis: 9/16/08, 8:00-9:30 p.m. EDT
Enlarged Prostate: 9/17/08, 8:00-9:30 p.m. EDT
Localized Prostate Cancer: 9/30/08, 8:00-9:30 p.m. EDT
Peyronie’s Disease: 10/7/08, 8:00-9:30 p.m. EDT
Premature Ejaculation: 10/23/08, 8:00-9:30 p.m. EDT
Patti LaBelle in Concert
These interactive Webinars are free to all participants and
are also available in a recorded version the day after the
live event. For more information or to register, visit
www.UrologyHealth.org.
Saturday, September 6, 2008,
7:30 p.m., Pier Six Pavilion, Baltimore, MD
To purchase tickets for this event, call 1-800-547-SEAT or visit
www.ticketmaster.com. Proceeds from this event benefit the Great
Prostate Cancer Challenge.
Great Prostate Cancer Challenge
Based upon the success of last year’s event in Baltimore, the Great
Prostate Cancer Challenge has been expanded to include runs in five
cities: Baltimore, MD; Nashville, TN; Indianapolis, IN; Harrisburg, PA;
and Richmond, VA. Held in partnership with local urology practices,
the proceeds from these events will help fund prostate cancer research. To view dates and times and to register for these events,
visit www.GreatProstateCancerChallenge.org.
Coming in September: Prostate Cancer Screenings
During the month of September the AUA Foundation wants to help
you find free or low-cost prostate cancer screenings. To find
a screening near you, visit www.UrologyHealth.org or call us at
1-800 828-7866 for more information.
13
ADVOCACY
UROLOGY Q&A
I am a 61 year-old-female
and it seems I am always
wet. I wake up wet, but I
don’t feel it coming. I
tried using a pad but now
that doesn’t work. What
should I do?
You should consult a urologist. You may need
to have a urodynamic evaluation to determine what is causing the problem.
In this edition of Urology Q&A, our expert physicians address kidney stones, prostate
disease and male sexual health.
I have swelling of my right testicle and slight throbbing on
occasion. Also, I experience some irritation when urinating
and have trouble getting the flow of urine started when
going. What could this be?
Swelling of the testicle is a concern. It could be due to fluid collection around the testicle that
is often associated with infection. One other, more worrisome cause of swelling of the testicle
is testicular cancer. Detecting this requires an evaluation which may include a physical examination and a scrotal and testicular ultrasound. The other symptoms may require further
evaluation. Prostate diseases, including prostatitis (inflammation of the prostate), prostate
cancer or prostate enlargement, also known as benign prostatic hyperplasia (BPH) can all
cause those sorts of symptoms.
I was diagnosed with a kidney stone. Does that mean I
can’t have sex until the stone is passed?
The term “kidney stone” implies that the stone was actually located in the kidney. However,
some patients use this same terminology to refer to a stone that has passed into the ureter
and is in the process of passing. The latter condition can be extremely painful during the periods of renal colic. Renal colic is a severe, relapsing pain which has been described to be
more severe than childbirth. It occurs as the stone makes its way down the ureter. It occurs
intermittently until the stone passes all the way into the bladder. It may be associated with
nausea and vomiting. Stones that are in the kidney are often not symptomatic unless they
are moving or causing obstruction or blockage of the urine-collecting system in the kidney.
Having a kidney stone by itself should not keep you from having intercourse. However, things
might get very uncomfortable if you began to experience renal colic during intercourse.
14
If I have a prostatectomy
will I ever get an erection
again?
Much of that depends on whether you have a
nerve-sparing procedure, how long it has
been since surgery and whether or not you
have had any partial erections. It is generally
believed that restoration of erectile function
after prostatectomy is better in men who are
younger at the time of their surgery, with cancer that is confined to the prostate, who have
nerves spared, especially if he had normal
erections prior to his surgery. Also, certain
medications can help. One important difference for a man that can achieve erections
after having his prostate removed is the
change in ejaculations. The prostate and seminal vesicles are responsible for making the
fluid found in semen. Without them, orgasms
do not produce ejaculation of fluid. That does
not mean they are not pleasurable, just different and “dry”. ❉
This issue features the following AUA
Foundation physician experts: Anthony Y.
Smith, MD, Albuquerque, NM and J. Brantley
Thrasher, MD, Kansas City, KS.
If you have a urologic health question
and would like to have it answered
by an expert physician, please e-mail
[email protected]
ADVOCACY
MY SIDE
Hank Porterfield
I was blessed with a good family doctor. In my early 60s, he provided me with a digital rectal exam
(DRE) as part of my annual checkup. After each checkup I was told the same thing: cholesterol,
bad; prostate; okay. Then a close friend was diagnosed with prostate cancer and, when I saw the
discomfort he experienced during radiation therapy, I decided it was time for me to be checked
again. To my surprise, I was told that I should see a urologist and ask for a prostate-specific antigen (PSA) test. The results of the test indicated that I should have a biopsy, and once I was diagnosed with prostate cancer, I weighed all of my options, before finally opting for surgery. After
surgery, I requested a PSA follow up and was rewarded with an undetectable level of PSA in my
blood.
With concern for four sons and other good intentions, I wandered into the world of support for
other men diagnosed with prostate cancer. I often joke that I fell asleep at an US TOO! meeting
and wound up as chairman. In the seven years that I served in that role, I saw so many colleagues
fight the good battle and eventually succumb to the disease.
As the prostate cancer advocacy community has grown and prospered it is obvious that not
nearly enough emphasis is being placed on reaching out to men to help them understand the
power of PSA and the benefits of early detection. Realizing the opportunity to continue to save
lives and reach out to men who were not informed or unwilling to utilize the prevention and diagnostic tools that were available, I helped form the Alliance for Prostate Cancer Prevention
(APCaP) in 2001. Now, we are reaching out to many men, ages 40 and up, who can benefit from
knowledge about prevention and early detection of prostate cancer. We believe that screening
for prostate cancer (via a PSA and DRE) are the first steps a man can take to help protect themselves. As a prostate cancer survivor I believe there is a great deal of hope in advocating for the
prevention for prostate cancer, and we will continue to reach as many men as possible. ❉
To learn more about APCaP, visit www.APCaP.org.
“As the prostate cancer advocacy
community has grown and prospered it
is obvious that not nearly enough
emphasis is being placed on reaching
out to men to help them understand
the power of PSA and the benefits
of early detection.”
Hank Porterfield
About Hank Porterfield
A 10-year survivor of prostate cancer,
Porterfield served as chairman and CEO
of US TOO! International for eight
years. Under his leadership, US TOO! was
expanded from 100 chapters to more
than 500 including chapters in Australia,
the United Kingdom, Canada and Europe.
He has also been appointed to serve on
several committees, including the National Cancer Institute, Prostate Cancer
Concept Review Panel (CEP) and the National Prostate Cancer Coalition. Because
of his abiding interest in early detection
of prostate cancer as well as prevention,
in 2001 he resigned as chairman and CEO
of US TOO! International to form the
Alliance for Prostate Cancer Prevention
(APCaP).
15
The AUA Foundation
launches the
Urology
Health Line —
Diseases that scare you
Conditions that
affect your family
Problems that affect
your personal life
1000 Corporate Boulevard
Linthicum, MD 21090
y
g
o
l
o
r
U tters
Ma ou.
to Y help.
We can
we’re here to answer
your questions
about urologic wellness.
You can reach us at
1-800-828-7866.
Promoting urologic health through education
Empowering patients through advocacy
Advancing cures through research
©2008 American Urological Association Foundation