ostate Pr S E

MAP a Game Plan
for Advanced Prostate Cancer
Making Awareness a Priority for African-American Men
Charlie Wilson
Grammy® nominated
musician and prostate
cancer survivor
table of Contents
DISCLAIMER: This guidebook and DVD program is intended for informational
purposes only. Anyone requiring medical or other health care should consult
a medical or healthcare professional. Any actions or inactions based on the
information provided are entirely the responsibility of the user and of any medical
or other healthcare professionals who are involved in such actions and inactions.
Janssen Biotech, Inc. (Janssen) and the Prostate Cancer Foundation (PCF) working
with producers Conrad & Associates and Alan Weiss Productions, guidebook author
Stephen Braun, and DVD scriptwriter Deborah Gobble, have used reasonable
efforts to include timely and accurate information in this guidebook and DVD.
Notwithstanding the foregoing, Janssen, the PCF, the producers, and the writers
make no representations or warranties, expressed or implied, regarding the
accuracy or completeness of the information provided herein and specifically
disclaim any liability, expressed or implied, in connection therewith.
Copyright 2013
Prostate Cancer Foundation
All Rights Reserved
No part of this book may be reproduced or transmitted in any form by any means, electronic
or mechanical, including photocopying or recording or by an information storage and retrieval
system, without written permission, except when permitted by law.
Cover Photo (Charlie Wilson)
Photography: Randee St. Nicholas
Talking About It
What Is the Prostate?
What Is Prostate Cancer?
Tests for Prostate Cancer
Prostate Cancer: A Closer Look
Treating Advanced Prostate Cancer
Managing Pain
Maintaining Your Health
Finding Support
Sex and Intimacy
A Word to Caregivers
Taking Action
Talking About It
Prostate cancer is one of those “below the belt” issues that many men
don’t want to talk about. They’d rather not discuss problems they
might be having “down there.” But it’s vital to think about—and talk
about—prostate cancer, particularly for African-American men.
This program will help you better understand advanced prostate cancer
and your options for dealing with it. You’ll learn:
African-American men have a higher risk of getting prostate cancer
than white men. One in every 5 African-American men will learn he has
prostate cancer in his lifetime. If you are reading this booklet, you may
be one of those men.
• How advanced prostate cancer may be treated
• More about prostate cancer
• Why African-American men are at higher risk for prostate cancer
• Things you can do to boost your overall health
So it’s time to talk. It’s time to
learn. It’s time to take greater
control of your own health and
“We as African-American
men don’t like to go to the
doctor. I was one of them.”
– Charlie Wilson, musician
This booklet and DVD program
are for African-American men
with a specific kind of prostate
cancer. This type is called advanced prostate cancer, also known
as metastatic cancer. These terms mean that the cancer has spread
beyond the prostate gland to other parts of the body. This is a serious
medical condition, but also one that may be managed.
1 in every 5 AfricanAmerican men will
learn he has prostate
cancer in his lifetime.
Today, there are many ways to treat advanced prostate cancer. New
treatments have extended the survival time for men with advanced
prostate cancer.
What Is the Prostate?
What Is Prostate Cancer?
Your prostate gland is about the size of a walnut, although it slowly grows
larger as men get older. It lies just below your bladder, which is where
urine is stored. The prostate surrounds the tube (called the urethra) that
carries urine from the bladder out through the penis.
Prostate cancer happens when some cells in the prostate grow in an
out-of-control way. This growth usually starts slowly. Most often a man
feels nothing in the early stages of prostate cancer. Needing to urinate
frequently, or having difficulty urinating, may be symptoms of cancer, but
are often caused by non-cancerous growth of the prostate. On the other
hand, the following symptoms may be signs of cancer:
The prostate’s job is to help produce semen, which is the milky liquid that
is ejaculated during orgasm.
• Blood in the urine
• Blood in the semen
• Difficulty having an erection
• Pain in the lower back, hips, or upper thighs
Your healthcare provider may suggest some tests that can reveal
whether your symptoms are caused by cancer or not.
Why Are African-American Men at Higher Risk?
Scientists do not know for sure why African-American men are at
higher risk for prostate cancer. Here are some possible reasons:
•African-American men are less likely to get optimal care for cancer than white men.
• Genetic differences may put African-American men at higher risk for prostate cancer.
•African-Americans are more likely to be diagnosed when their cancer is at a later stage of disease.
Tests for Prostate Cancer
Prostate Cancer: A Closer Look
One sign of prostate cancer is a high level of a substance called
prostate-specific antigen, or PSA. Cancer cells may produce more PSA
than normal. Your PSA level is measured in a small sample of blood. The
normal range of PSA for African-American men varies, depending on
your age.
There are 4 stages of prostate cancer. In stages 1 and 2, the cancer is
inside the prostate. In stage 3, a cancerous tumor extends beyond the
prostate, but the cancer cells have not spread. Stage 4 prostate cancer
means that prostate cancer cells have spread to other parts of the body.
The cancer is said to have metastasized.
If your PSA level is high, your healthcare provider may suggest a more
direct test for prostate cancer, called a biopsy. In a biopsy, small samples
of prostate tissue are tested for cancer cells. If cancer is found, the next
question is whether the cancer has spread beyond the prostate gland into
surrounding parts of the body. This can be done with other types of tests,
When prostate cancer cells spread, they usually end up in the bones,
or, less frequently, the lungs or liver.
In these tissues, the cancer cells can continue to grow and form tumors.
This can cause pain and can damage these tissues.
Prostate cancer cells
that have spread
from the prostate to
the lower spine
• X-rays to see whether cancer has spread to the bones
• Computed Tomography (CT) scan
A type of scanner that takes detailed pictures of the areas around your prostate to look for signs that cancer has spread to nearby tissue.
• Magnetic Resonance Imaging (MRI)
MRI machines make pictures of your body using a very strong magnet linked to a computer. MRI pictures can sometimes reveal more detail than CT scans.
Treating Advanced Prostate Cancer
Men with advanced prostate cancer have many choices of treatments
these days. There is no “best” treatment. What is best for one man may
not be best for another. Your healthcare provider will work with you to find
a treatment—or combination of treatments—that is right for you.
Surgical removal of the prostate is sometimes suggested for men with
early-stage prostate cancer. But it is not usually recommended for men
with advanced prostate cancer. That’s because the risks and possible side
effects of the surgery outweigh the possible benefits. But sometimes a
surgical procedure may be used to reduce symptoms associated with the
cancer, such as having difficulty with urination.
Hormone therapy
Prostate cancer “feeds” on male hormones, such as testosterone. Cutting
off the supply of testosterone, or blocking the action of testosterone, may
slow or stop the growth of prostate cancer.
One way to reduce testosterone is to surgically remove the testicles,
although this is rarely used. The other way is to use medicines to block
testosterone production or block the action of testosterone on cancer
cells. Either approach can produce side effects such as:
Your healthcare provider
will work with you to
find a treatment—
or combination of
treatments—that is right
for you.
• Lack of energy
• Hot flashes
• Bone thinning
• Swollen and tender breasts
• Difficulty getting and maintaining an erection
• Low desire for sex
For most men, prostate cancer
can be controlled for many years
with hormone therapy. Some men
respond less well to this type of
treatment, though. When prostate
cancer progresses in spite of
testosterone-lowering efforts, it is
called castration-resistant prostate
cancer (CRPC). Your healthcare
provider may suggest other forms
of treatment for CRPC.
Chemotherapy is the term used for drugs that kill cancer cells or halt
cancer growth. Chemotherapy for advanced prostate cancer is usually
given through a vein in your arm, rather than pills. The drugs are usually
given in a clinic, hospital, or doctor’s office.
Chemotherapy works by killing fast-growing cancer cells. This means
the drugs can also harm or kill normal cells that divide rapidly, such as
those found in the mouth, intestines, and scalp. This can lead to a wide
range of side effects including tiredness, hair loss, nausea, vomiting, and
diarrhea. Your healthcare provider may suggest medicines that can help
reduce these side effects.
Radiation Therapy
Radiation therapy uses high-energy rays, called gamma rays, to shrink
tumors or kill cancer cells. Radiation can be delivered with beams from
outside the body or by implanting into the prostate tiny “seeds” that
slowly release radiation. Sometimes radiation
therapy is used along with hormonal therapy.
Depending on the dose and type,
radiation therapy can cause side effects
including tiredness, diarrhea, frequent and
uncomfortable urination, skin irritation,
difficulty controlling urination, and difficulty
getting an erection.
Treatments for the Spread of Cancer to Bones
Sometimes prostate cancer cells can move to the bones. This can
weaken them or result in pain. Treatments exist that may help strengthen
bones and relieve bone pain. Two types of medicines can directly help
build bone strength. Other types of treatments, such as radiation or
nuclear medicines, may help control the growth of cancer cells in
the bones.
“It’s important to have
knowledge about this
– Charlie Wilson, musician
Managing Pain
New Treatments
Many new types of medicines are being developed to treat advanced
prostate cancer. Some of these medicines work by helping the body’s
immune system attack cancer cells. New types of hormone therapies work
to further reduce or block testosterone, which may help manage
the disease.
Clinical Trials
Clinical trials are programs to see if new treatments are safe and effective.
Some of these new treatments may be available to men with advanced
prostate cancer. There is no guarantee that a new treatment will help. But it
might, and joining a clinical trial can provide benefits such as more frequent
checkups or more help managing side effects. If you are interested in a
clinical trial, talk to your healthcare
provider, or visit the government’s
clinical trial Web site
(www.clinicaltrials.gov) for
more information.
When prostate cancer advances, it is more likely to cause pain—either
from the cancer itself, or from a treatment. Some African-American men
think they shouldn’t complain about pain, or that they should just “tough
it out.” But nobody should suffer from pain. Relieving pain may help you
carry on with your life.
If you are experiencing
pain, speak to your
physician about the
best options for you
to help manage it.
Maintaining Your Health
Controlling cancer-related pain usually requires some kind of prescription
pain-relief medicine. These medicines come in many forms and strengths.
For example, some are long-lasting, while others work right away.
Your healthcare provider will work with you to choose the medicine, or
medicines, that are best for you and your specific pain.
Some men with advanced prostate cancer say it’s important for them to
participate as fully as possible in their career, relationships and everyday
life events. Others find a need to step back and reflect on their diagnosis
and treatment before resuming daily activities. Regardless of your own
approach, you may find that symptoms of the disease and medical
treatments affect you physically.
Some people with cancer-related pain need higher
doses than others. Needing larger doses is not
a sign of weakness and does not mean you are
becoming an “addict.” Fears about addiction
may lead people to suffer when they don’t need
to. When used as prescribed by a doctor, pain
medicines may improve your activity level and
reduce your suffering. Remember: Take your pain
medicine on time, every time!
Pain medicines usually involve some side effects. Some of these, such
as upset stomach or feeling sleepy, usually go away in a few days. Other
side effects, such as constipation, do not go away. Constipation may be
managed by adding fiber to your diet, drinking enough water, and using
treatments suggested by a healthcare provider. This preventive treatment
should be started when the pain medicine is started.
Many kinds of non-medical treatments may also be used to help manage
cancer pain. Such techniques can be used together with pain medicine,
though they can also be used alone. Talk to your doctor about options that
are right for you.
There are many things
you can do to build
energy and improve
your health. A first step
might be to arrange
for care by a team of
healthcare providers.
There are many things you can do
to build energy and improve your
health. A first step might be to
arrange for care by a team of
healthcare providers. This is called a
multidisciplinary approach. You may
get help from specialists in pain,
diet, physical therapy, or mental
health. Talk to your healthcare
provider to see if this kind of
approach would be helpful for you.
Work with your healthcare team to
understand how exercise may fit into
your management plan. Exercise
can be good for both your body and
your mind! Even if you cannot walk,
you may be able to do exercises in
bed or in a chair. Speak with your
healthcare team to tailor an exercise
regimen that works well for you.
Eat foods recommended by your
healthcare provider. Cancer or
cancer treatments can change your
appetite or make eating difficult. You
also may need to change your diet to
maintain a healthy weight.
Before you start treatment, go to the
dentist. It’s important to have healthy
teeth and gums!
Pay attention
to your
moods. It’s
normal to
feel a range
of emotions
when faced
with advanced prostate cancer. But
severe emotions, such as anxiety
and depression, can make life
difficult and make it harder to stay
healthy. Tell your healthcare provider
about your moods. There are many
ways to reduce anxiety, relieve
depression, and treat other kinds of
mood disorders.
“Keep a happy spirit, and
live one day at a time.”
– Charlie Wilson, musician
Finding Support
Sex and Intimacy
It’s important to have someone you can share your concerns and feelings
with. This person may be your romantic partner, a sibling, or a close friend.
Ask them if they are OK with just listening while you talk sometimes, giving
advice only when you ask for it, and understanding if sometimes you will
be irritable and not in a mood to talk at all. Chances are they will appreciate
your honesty and try to adapt to your needs as much as possible.
Having advanced prostate cancer—or being treated for it—can affect
your ability or desire to have sex. This may take some getting used to. As
a man, your sexuality may be strongly tied to your sense of well-being.
The thought of not having full sexual feeling or ability can lead to a
sense of anger, loneliness, or even depression. For many people, talking
about sex and intimacy, whether with a partner or a physician, can feel
uncomfortable, but doing so is your best
bet for finding solutions.
It can also be very comforting and helpful to meet others who are coping
with advanced cancer. Support groups can meet in person, by phone, or
over the Internet. You may gain new insights, get new ideas for ways to
cope, or feel better just knowing you’re not alone in your struggle. It may
also help to seek spiritual support. A spiritual adviser from your place of
worship may provide guidance and care for you and loved ones.
Support groups
can meet in
person, by phone,
or over the
One key is good communication with your
partner. It’s important for both partners
to allow the other person to talk about
how they feel and to brainstorm ways to
enhance your sex life. Remember that
even if it is more difficult to achieve or
sustain sexual functioning, you are still a
sexual being. Sexuality includes making your partner feel good in ways
that are not limited to traditional intercourse. For many women, hugging
and cuddling are as much a part of intimacy as sexual acts. Intimacy also
includes giving your sexual partner permission to explore alternate ways
to make you feel good.
Try to be open to the advice or educational materials your healthcare
provider offers. Some of it may work and some may not, but trial and error
result in solutions that lead to increased sexual satisfaction.
A Word to Caregivers
Taking Action
Advanced prostate cancer and its treatments can involve strong feelings,
shifts in life patterns, and sudden mood changes. These are normal, but
they can make it challenging to support a man who is coping with cancer.
Here are some suggestions for ways to help:
By reading this booklet and watching the DVD, you’ve taken an important
first step in understanding advanced prostate cancer. You’ve learned that
you have options for treating advanced prostate cancer and managing
your health and wellness.
• Believe what he says about his experiences or pain.
Having an advanced disease can be a time of personal growth. You may
find a renewed desire to make the most of each day. No two people—and
no two cancers—are exactly alike. But you can use the information in
this booklet to begin charting your own course. By working with your
healthcare team and your personal support network, you can give yourself
the best chance of staying healthy and getting the most from whatever
treatments you choose.
• Watch for signs that he is depressed, such as changes in sleep or eating patterns, lack of energy, losing weight, or weight gain. (Note, however, that such changes can also be caused by cancer treatments themselves.) If you are concerned, talk to his healthcare provider.
• Take care of yourself and your own needs. If you “burn out” or develop your own difficulties, you won’t be able to care for him the way you want to.
• Offer to help with the paperwork involved with cancer care.
• Offer to go with him on visits to healthcare providers.
• Offer to keep track of medicines and prescription refills.
• Accept offers by other people to help out.
Janssen Biotech, Inc.
Janssen Biotech, Inc. redefines the standard of care in immunology, oncology,
urology and nephrology. Built upon a rich legacy of innovative firsts, Janssen
Biotech has delivered on the promise of new treatments and ways to improve
the health of individuals with serious disease. Beyond its innovative medicines,
Janssen Biotech is at the forefront of developing education and public policy
initiatives to ensure patients and their families, caregivers, advocates and health
care professionals have access to the latest treatment information, support
services and quality care. For more information on Janssen Biotech, Inc. or its
products, visit www.janssenbiotech.com.
Prostate Cancer Foundation
Firmly committed to curing prostate cancer, the Prostate Cancer Foundation is
the leading philanthropic organization funding and accelerating research globally.
Since 1993, our unique strategies for identifying and investing in the most
promising research programs have generated life-saving results. We channel
resources to the world’s top scientific minds—cutting red tape and encouraging
collaboration to speed breakthroughs.
As a champion for increased government and private support, PCF has helped
build a global research enterprise of nearly $10 billion. Through the generous
contributions of our donors, we have funded more than 1,600 programs at nearly
200 research centers in 16 countries. Visit www.pcf.org for more information.
American Cancer Society
Prostate Cancer Foundation
800-757-CURE (2873)
American Urological Association
Prostate Conditions Education
Black Barbershop Health
Outreach Program
Prostate Health Education Network
Centers for Disease Control
and Prevention
Male Care
National Alliance of State
Prostate Cancer Coalitions
National Cancer Institute
The Prostate Net
Us TOO International Prostate
Cancer Education and Support
Women Against Prostate Cancer
Zero: The Project to End Prostate
National Comprehensive Cancer
MAP a Game Plan
for Advanced Prostate Cancer
Making Awareness a Priority for African-American Men
Advanced prostate cancer is
a serious medical condition,
but also one that may be
addressed in conjunction with
one’s healthcare team. This
booklet and DVD program
may help African-American
men and those who love them
better understand what such a
diagnosis means. New options
for treating advanced prostate
cancer are becoming available. No two men—and no two cancers—
are exactly alike. But the information in this booklet can help you
chart your own course in conjunction with your healthcare team.
In this program you’ll learn:
• More about prostate cancer
• Why African-American men are at higher risk for prostate cancer
• Options for managing advanced prostate cancer as part of one’s overall health plan
Charlie Wilson
Grammy® nominated
musician and prostate
cancer survivor