Transcript Interdisciplinary Care Involves Us TOO

Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
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Us TOO
Prostate Cancer
Education and Support
Wm. Beaumont Hospital , Royal Oak, MI
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
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About Us TOO
No one needs to face prostate cancer alone. Us TOO
provides the forum for sharing, caring and learning
through its many programs and services designed for
both men with cancer and their loved ones.
In addition to providing education and support
programs, Us TOO is an active advocate for patients.
We are committed to making sure patients have access
to the programs, medications, treatments and health
care professionals they need for the best possible
outcomes.
“To know the road ahead, ask those coming back” Chinese proverb
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
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About Us TOO
Grassroots organization started in 1990 by five
prostate cancer survivors
501(c)(3) not-for-profit charitable organization
We are dedicated to communicating timely,
reliable information, regarding early detection and
treatments of prostate cancer
So, informed choices may be made in a timely
manner
Ultimately, Us TOO strives to enhance the quality
of life for all those affected by prostate cancer
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
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Us TOO International
325 Chapter Support Groups Internationally
295 United States
(44 states)
10 Canada
8 England
5 Scotland
 1 each
Australia
Bahamas
Barbados
Belgium
Germany
India
Spain
Support Groups Provide:
 Regular meetings for men, their
families & friends
 2nd Tuesday of each month at 6:30pm at the
Beaumont Royal Oak Administration Building
 We provide personal information
sharing from “survivors”; including
discussions on current prostate cancer
topics
 Outside speakers & physicians provide
unbiased information related to:
 Prostate cancer treatment options
 Diet, nutrition & research
 Mental health, coping strategies and
more
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
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Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
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New Diagnosis
Treatment Options
Post-Treatment Issues
Experienced a Relapse or,
Advanced Disease
Overview & Statistics
Early Detection
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
Clinical Trials & Studies
Emerging Treatments
Special News for African
American Men
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Our Hot Sheet monthly newsletter
highlights the latest in treatment
strategies as well as emerging
treatments
22,000 monthly HotSheet
newsletters are distributed through
our Support Groups
Regular Online updates are available
Also, Us TOO distributes Prostate
Cancer NEWS You Can Use via email
to interested subscribers. Topics
highlight latest news of interest to
patients and concerned others
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
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Other Helpful Resources for Families
Us TOO International
1/800/808-7866
National Cancer Institute
1/800/422-6237
Cancer Care
1/800/813-4673
Cancer Hope Network
1/877/467-3638
Cancer Information Service & Counseling Line
1/800/525-3777
Patient Advocate Foundation
1/800/532-5274
Be careful of information overload and “dot com
websites” Vs “dot ORG”
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
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Receiving the news that you or a loved
one has prostate cancer is traumatizing,
Life is suddenly out of control
Feelings may emerge such as:
 Helplessness
 Anger
 Guilt
 Sadness
 Shame
 Fear
 Isolation
 Grief
 Anxiety
 And Possibly Blame
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
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Monthly meetings provides peer-to-peer support
for patients and families
We focus on “peer support” and “patient directed
care and treatment”
 Provide patient and family information gathering for
informed decision-making
 This includes the need to make the “right” decision!
Support also includes, Pre and Post procedure
support for:
 Newly diagnosed patients (pre-treatment)
 Patients in treatment and
 Post treatment support
 And re-occurrence
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
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Monthly meetings
Includes “partnering” with a survivor with “like
procedure” (pre through post treatment).
Caregiver support for family members, including, wives,
family members and partners.
The added burden of cancer is sometimes made worse
by conflicting messages from family, friends and coworkers… Positive Attitudes Only Through These Doors…
Chose information carefully, i.e., Us TOO and your
doctor Vs Internet sources
Us TOO Volunteers also gives one-on-one support and
local health fairs & community health activities
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
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The Numbers Will Increase as The Baby Boomers Age
39 Million Baby-Boomers are aging and at risk
One in 6 of the 39 million Baby Boomer men translates
to 6.6 million men at risk and in need of screening,
information and support.
Despite advances, 30,000 deaths due to Prostate
Cancer happen each year, that is 90 American men each
day.
Within the next 9 years (2015), we will see an increase
of nearly 70% to 50,000 deaths per year.
In the next 14 years, by 2020, the total number that die
from PCa will be 650,000. More than the number of men
killed in all US wars in the last 100 years (since
1900…642,352 deaths).
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
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Earl Woods
74, father of Tiger Woods,
dies of cancer at age 74 at
his home in Cypress
California.
Earl Dennison Woods was
born March 5, 1932, in
Manhattan, Kan., raised there
and went to college there —
at Kansas State.
He was granted a scholarship at Kansas State as a baseball catcher. At
the time he was the only black athlete in the Big Seven (now the Big 12).
He earned a degree in sociology in 1953, joined the Army in 1954 and
stayed 20 years. He did two tours of duty in Vietnam and attained the rank
of lieutenant colonel in the Green Berets.
Mr. Woods had heart problems, diabetes and poor circulation in his legs.
His prostate cancer returned in 2004. He passed away on May 3, 2006.
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
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A Special Message for African
American Men about Prostate Cancer.
Every hour in the United States, three African American
men are told they have prostate cancer.
In less than 100 minutes, another African American
man will die from the disease.
In the single decade of the 1990’s, prostate cancer
killed about 350,000 men, slightly more than the entire
population of Cincinnati, Ohio.
Is prostate cancer a more aggressive disease in African
Americans? Or, is the outcome due to medical access
and treatment information?
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
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So, what are the signs and Symptoms
Early-stage prostate cancer may not be associated with any
obvious signs or symptoms, or may cause symptoms that can
be mistaken for those of other disorders. Most cases of
prostate cancer are not detected until they have spread out of
the prostate and begin to cause noticeable symptoms.
The signs and symptoms of prostate cancer may include:
Pelvic pain
Blood in the urine
Frequent need for urination
Painful ejaculation &
Difficult or painful urination
Bone pain
Loss of appetite & weight
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
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Recommendations
Establish a ‘baseline’ PSA value
and get annual examinations:
1.
( Birthday, Father’s Day, or,
September which is Prostate
cancer Awareness Month).
 By age 40 for African American
men and men with a family
history of prostate cancer.
 No later than age 45 for all other
men.
2.
Know your PSA – Keep a
record of the exact
numbers, not just that it is
“in the normal range?”
3.
Track changes in your PSA
Annual prostate exams should
include:
 PSA (Prostate Specific Antigen)
blood test, plus
 DRE (Digital Rectal Exam)
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
Make it a calendar event so
you remember!
An increase of 0.75 (25%) or
more is a red flag – see your
doctor for follow-up.
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Prostate Health Recommendations
Us TOO believes that following
these recommendations will
detect prostate cancer earlier,
decrease deaths from it, and
improve quality of life.
Earlier detected disease is
more easily and effectively
treated.
The benefits of early detection
and treatment outweigh the
cost and inconvenience of late
treatment.
Benefits are in the form of
reduced overall cost and
increased effectiveness of
treating the disease.
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
Preparation and communication are
essential.
Despite advances, 30,000 deaths due to
Prostate Cancer happen each year, that
is 90 American men each day.
Recognizing the Baby Boom generation
is entering the high incidence age, more
presence in the national media is
needed.
There are slightly more cases of Prostate
Cancer diagnosed each year than Breast
Cancer (230,000 Vs. 216,000, the top
two cancer diagnoses). An American
man is 33% more likely to develop
Prostate Cancer than an American
women is to get Breast Cancer.
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Making a Difference Together
“Early Detection Is The Cure!”
“Never doubt that a small group of
thoughtful, committed citizens can
change the world; indeed, it's the
only thing that ever has.”
Margaret Mead
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
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Caregivers
Prostate cancer is a disease of the patient, the partner or
spouse, and the family. While the patient experiences
cancer in their body, those closest to the patient have an
experience of prostate cancer that is very real.
The challenges of the caregiver may not show up on a lab
chart or test result, yet they are often equally painful and
traumatic. Their experience can leave them feeling helpless,
confused and alone.
Their lives are also dramatically impacted by the diagnosis
and treatment of prostate cancer. They too, experience the
treatments, the doctor visits, interrupted sleep, sadness,
fear and grief.
Us Too Prostate Cancer Education & Support Group
Beaumont, Royal Oak Rev: 5/3/2006 R. Witherspoon
Caregivers
Diagnosis: Diagnosis can be a very stressful and emotional
time for the patient and those people who stand beside him.
Days, weeks and even months later, diagnosis can feel like a
blur. Information overload is very common.
Treatment: Treatment can be a long and challenging
process. Simply becoming aware of treatment options then
making a decision can be overwhelming in itself. What is
your role in treatment decisions and in HIS course of
treatment?
Living with Prostate Cancer: You may not have cancer in
your body, yet you are experiencing cancer. You are
experiencing stress, uncertainly, anxiety just like him, and
this impacts your body’s well-being too. How do you cope
with the uncertainty and interruption in your life?
Us Too Prostate Cancer Education & Support Group
Beaumont, Royal Oak Rev: 5/3/2006 R. Witherspoon
Caregivers
Recovery: Every patient hopes for recovery. After
prostate cancer, how do you return to “normal”? Has
“normal” changed? Has your relationship changed? Your
outlook? Your hopes? When does hopeful living return?
Advanced Disease: Sometimes recovery is not possible
and the cancer progresses. Sadly, for some, thoughts of
recovery turn to questions of care and hospice.
How do you respond to these decisions and make peace
with the potential outcome?
Us Too Prostate Cancer Education & Support Group
Beaumont, Royal Oak Rev: 5/3/2006 R. Witherspoon
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
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Prostate Cancer Overview & Statistics
The causes of prostate cancer are not fully understood,
although it is believed that multiple factors can contribute to
your overall risk, including your family background, ethnicity,
diet, and environmental factors.
Doctors can seldom explain why one man develops the disease
and another does not. Research has shown that men with
certain risk factors are more likely than others to develop
prostate cancer. A risk factor is something that may increase
the chance of developing a disease.
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
24
Prostate Cancer Overview & Statistics
Age: This is the strongest risk factor for prostate cancer.
The disease is rare in men younger than 45, but the
chance of getting it goes up sharply as a man ages.
Family history: A man’s risk of prostate cancer is higher
than average if his brother or father had the disease.
Race: Prostate cancer is more common in African
American men. It is less common in Asian and American
Indian men.
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
25
Statistics
Every year over 232,090 men are diagnosed with
prostate cancer, and about 30,350 die. If detected early,
prostate cancer is often treatable.
1 in 6 men is at a lifetime risk of prostate cancer
A man with one close relative with the disease has
double the risk. With two close relatives, his risk is fivefold. With three, the chance is 97%.
Two men every five minutes are diagnosed with prostate
cancer.
Risk begins to increase significantly at age 50 for white
men and at age 40 for African-American men
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
26
Statistics
African-American men are more likely than whites to
develop prostate cancer, whereas many Asian
populations have the lowest rates of prostate cancer.
African American males have a prostate cancer incidence
rate up to 60% higher than while males and double the
mortality (death) rate of white males. Every 100 minutes
an African American male dies from prostate cancer.
Prostate cancer is the fourth leading cause of death
among African American men over the age of 45.
Diets high in fat may increase your risk of prostate cancer
by increasing testosterone, which stimulates prostate cell
growth
Is prostate cancer a more aggressive disease in African
Americans? Or, is the outcome due to medical access
and treatment information?
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
27
The Prostate
Knowing more about the prostate and prostate
cancer is the first step in coming to terms with a
diagnosis of prostate cancer. The following section
describes the prostate and what happens in
prostate cancer.
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
28
Where is the prostate and what does it do?
The prostate is a small gland
located at the bottom of the
bladder, surrounding the topmost
section of the urethra, the tube
that drains urine from the
bladder
It produces prostatic fluid
It’s connected to the seminal
vesicles, which produce fluid that
mixes with prostatic fluid to form
semen, the substance in which
sperm is transported
Tubes from the testicles carry
sperm to the prostate where the
sperm are mixed with semen
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
29
A Healthy Prostate
Cells make up all of your body’s tissues and organs,
including the prostate. Normally, cells within the
prostate grow, divide, interact, and die to make sure
the prostate functions properly. Cells within the
prostate are held together tightly and when cells
growing within the prostate bump into each other,
they normally stop growing or die off to make room
for new cells.
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
30
Prostate Cancer
Prostate cancer cells have
lost control and grow on
top of each other, forming
a tumor. Cancer cells can
also break away from the
prostate and travel
throughout your body,
attach to other tissues,
and continue to grow, a
process called metastasis.
What causes normal prostate cancer cells to become
cancer cells isn’t fully understood, but it involves a
disruption of the processes that control normal cell growth
and death.
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
31
Important Facts Every African American Should
Know About Prostate Cancer.
Us TOO strongly recommends
that all African American men see
their doctor for a digital rectal
exam (DRE) and prostate specific
antigen (PSA) blood test annually
beginning at the age of 40 and to
carefully track their PSA test score
each year. An increase of 0.75 (or
25%) in your PSA score over the
period of one year warrants further
investigation.
Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
Prostate cancer incidence and mortality rates are based
on 2003-2004 estimates by the American Cancer Society
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Us Too Prostate Cancer Education & Support Group
GM Presentation 5/18.2006
R. Witherspoon
33