National Center for Health and
the Aging
• The National Center for Health and the Aging (NCHATA), a
project of North American Management, is supported in part
by a cooperative agreement grant awarded by the U.S.
Department of Health and Human Services, Health Resources
and Services Administration (HRSA).
• The National Center for Health and the Aging provides training
and technical assistance to strengthen the capacity of
federally-funded health centers to increase access to health
care, eliminate health disparities and enhance health care
delivery for the 39 million or 13 percent of Americans aged 65
years age and older.
Facts
New Cases
• African American/Black men have the highest rate of new cases
for prostate cancer in the United States.
Cancer Death
• Prostate cancer is the second leading cause of cancer death in
African American men.
Death Rates
• The prostate cancer death rate for African American men with
12 or fewer years of education was twice that of men with
more than 12 years of education.
American Cancer Society. (2011.) Cancer Facts & Figures for African Americans 2011-2012.
Atlanta: American Cancer Society.
Prostate Cancer Risk by Age
Percentage of men (how many out of
100) who will get prostate cancer
The risk of getting prostate cancer increases with age.
Percent of U.S. Men Who Develop Prostate Cancer over 10-,
20-, and 30-Year Intervals According to Their Current Age,
2008–2010
16.0
14.0
12.0
10.0
8.0
6.0
4.0
2.0
0.0
13.7
8.2
14.9
12.6
Time Period
10 Years
8.1
6.4
20 Years
30 Years
2.5
0.4
30
0.0
2.6
0.3
2.3
40
50
Man’s Current Age
60
Howlader N, Noone AM, Krapcho M, Garshell J, Neyman N, Altekruse SF, Kosary CL, Yu M, Ruhl J, Tatalovich Z, Cho H, Mariotto A, Lewis DR, Chen
HS, Feuer EJ, Cronin KA (eds). SEER Cancer Statistics Review, 1975–2010,External Web Site Icon National Cancer Institute. Bethesda, MD,
Barriers to screening and the timely
diagnosis among African American/Black
men:
Low socioeconomic status
(SES)
Lack of health insurance
coverage
Unequal access to health
care services
Absence of ties to a
primary care physician
Thomas Kirk
President & CEO of Us TOO
The Prostate Cancer Education and Support Network
Welcome & Learning Objectives
 Welcome:
 Tom Kirk has been heading Us TOO since November 2004, an
experienced family-services leader
 Us TOO was organized by prostate cancer survivors, their partners
and friends in the late 1980’s and incorporated as a not for profit in
1990 (one of the first prostate groups in the US/world) and has over
300 affiliated volunteer support groups
 Someone to talk to…who understands
 Objectives:
 Hear an overview of prostate cancer incidence and challenges
 Identify those at risk such as African Americans and others
 Learn about Us TOO and other resources in fighting prostate
cancer
What is the prostate gland, what
are some common problems?
 Only men have prostate glands, but women are affected
because of their relationships
 Prostates grow larger as you get older. If your prostate gets
too large, it can cause health issues. It does not always
mean you have cancer.
 The NIA tells us about common problems men face:
Benign prostatic hyperplasia (BPH), means your prostate is
enlarged, but is not cancerous. It is very common in older
men. An enlarged prostate may make it very difficult to
urinate or cause dribbling after you urinate. You may feel
the need to urinate a lot, often at night.
What is the prostate gland, what
are some common problems?
 Acute bacterial prostatitis usually starts suddenly from a bacterial
infection. It can cause fever, chills, or pain. It might hurt when you
urinate, or you may see blood in your urine. Your doctor can prescribe
medicine to make you feel better.
 Chronic bacterial prostatitis is an infection that comes back again
and again. This is a rare problem that can be hard to treat.
 Chronic prostatitis, also called Chronic Pelvic Pain Syndrome (CPPS),
is a common prostate problem. It can cause pain in the lower back, in
the groin area, or at the tip of the penis. Men with this problem often
have painful ejaculation. They may feel the need to urinate frequently,
but pass only a small amount of urine. Treating this condition may
require a combination of medicines, surgery, and lifestyle changes.
Where is the Prostate Gland and
what is prostate cancer?
The prostate gland is a part of the male
reproductive system, located below the bladder
and just in front of the rectum. It is a walnut-size
gland that manufactures fluid for semen.
Prostate cancer is a disease that affects the cells
in the prostate. If cells divide in an abnormal way,
they can form a tumor.
Why is cancer an Issue?
 Cancer is age related, placing more at risk (there are
approximately 12 million people living with cancer in
America now)
 America is aging, the Federal Administration on Aging
tells that “by 2030, there will be about 72.1 million older
persons, more than twice their number in 2000”.
 The post war baby boom generation is turning 65 at the
rate of 10,000 per day, meaning even more at risk.
 CDC tells us cancer kills 575,000 people/year second
only to heart disease at 598,000…all other causes are
much lower.
Why is prostate cancer an Issue?
 One in two men are at risk of getting cancer in their
life and one in three women
 Men do not live as long as women on average and the
major diagnosed men’s cancer behind skin cancer is
prostate cancer…for women it is breast cancer also
second to skin cancer
 Both are major or common cancers
 Although progress is seen, less is still known about the
prostate or prostate cancer by the public than breast
cancer
Why is prostate cancer an Issue?
 The NCI says there are more than 2.6 million men
living with prostate cancer with 238,590 estimated new
cases diagnosed in 2013 and 29,720 deaths.
 The risk of having a prostate cancer diagnosis at 1 in 6
is higher than the risk of breast cancer for women at 1
in 8 (or as some data show 1 in 7).
 The risk for African American men is higher at 1 in 4.
This disparity is a major concern. Certain other groups
are also at risk, Vietnam vets and people with family
members who are also affected.
Why is prostate cancer an Issue?
 The CDC tells us it is the second leading cause of
cancer death behind lung cancer and it is the 4th
leading cause of death for African American men over
the age of 45, behind heart disease, lung cancer and
stroke.
 There are barriers to reaching this population, vets and
African American men often have access issues and
mistrust (Tuskegee experiments and Veterans service
facilities often bring mistrust)
Prostate Cancer Challenges Today
 Early prostate cancer often does not have symptoms,
thus in the past men were diagnosed often with
advanced metastatic disease when the cancer cells left
the prostate and caused pain elsewhere such as in the
bones.
 Men do not like to talk as openly as women do. They try
to be strong silent types, thus the cause is different.
 The PSA blood test resulted in a jump of men
diagnosed in the 1990’s and is now controversial. Some
fear more men will be diagnosed later or over-treated.
Prostate Cancer Challenges Today
 Early detection now becomes more of an issue for
individuals in the confusing environment of screening
recommendations from USPSTF and others
 The PSA test has limitations, it is not prostate cancer
specific and may identify other prostate conditions.
 The rectal physical exam is often seen as embarrassing
and is avoided (or joked about at best).
 There is hope, we know more about prostate cancer
and have better treatments than ever before.
Suggestions: What Can be Done?
 Raise Awareness, offer discussion and information
about the prostate gland (many men know little about
their prostate (often still called prostrate), where it is,
what it does and how it can act up as they age)
 Get women involved, they are more active in health
care generally…this affects them too
 Form collaborations: Be aware of barriers faced by
families, such as no doctor, insurance, transportation,
fear, etc: be aware of community resources such as Us
TOO, support groups, sources of information and
outreach programs
About Us TOO: A Resource
 Us TOO named in 1990: like breast cancer, the
prostate cancer battle is the same for “us too”
 “Learning to cope through knowledge and hope”
 Mission updated in 2009: Be the leading prostate
cancer organization helping men and their families
make informed decisions about prostate cancer
detection and treatment through Support,
Education and Advocacy/Awareness.
About Us TOO: Support, Education
and Advocacy
 On-line and in-person support groups to learn to be
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empowered and informed
Monthly newsletter, the HotSheet
NEWS You Can Use eblasts and Webinars
Kits: Advanced Disease Kit, 2011, sent with Dr. Moyad’s
book & Newly Diagnosed Kit
Educational brochures/Online Info Request Center
Collaborative website: My Prostate Cancer Roadmap
Us TOO website with 5 million hits/year
About Us TOO: Support, Education
and Advocacy
 Advocacy alerts on:
• Funding appropriations (CDMRP/PCRP)
• Reimbursement issues
• Reaction to PSA testing controversy
 Collaboration with America’s Prostate Cancer Organizations, New
Website
 ZERO, CLC, OVAC, NHC
 SEA Blue Prostate Cancer 5K run/3K walk – Chicago and Central
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Illinois
Pints for Prostates and Pours for prostates Events
Facebook, LinkedIn, YouTube, Twitter
Conquer Prostate Cancer leather wristbands and blue bands
ON THE LINE collaboration, launch in February 2011
Us TOO Support Groups/Chapters
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Provide peer-to-peer support
Local, community-based
Can have multiple chapters in 1 city
Facilitate personal information sharing
Include partners, companions and families
Independent and shared objectives & operation
Some provide educational symposia & workshops
Volunteer leaders sometimes work with other community
resources
 Some organize Awareness/Fundraising Events
Making a Difference Together
 Share personal stories, talk about prostate cancer and
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men’s health issues, prostate cancer kills men and is
second only to lung cancer in cancer deaths as is breast
cancer in women
Promote the color blue and the blue ribbon –
representing support and research efforts for prostate
cancer…you see Pink!
Have a positive message, early treatment is available,
empower men and others to be the quarterback of
their care…be in charge, do not try to do it alone
Reach out to those at high risk
Refer people to Us TOO and our materials and support
groups
Making a Difference Together
 Researchers are studying possible reasons for African
American men at risk, including culture, environment,
and differences in the biology of the disease in African
American men.
 September is Prostate cancer Awareness month and
Movember is bringing more awareness as well
 Brochure from successful past outreach: Special News
About Prostate Cancer For Men At High Risk
 http://www.ustoo.org/PDFs/CDC_Program_Brochure.
pdf
Wrap-up and Summary
 Men and women need to be empowered to handle this
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growing health issue, we believe not enough is being done
This is an important personal decision in these confusing
times of mixed messages and rapid discovery
We have a right to know if we have cancer
No one wants to be over treated or under treated
Prostate cancer may or may not kill you, there is no test to
tell you if you are facing a tiger or a pussy cat.
Watchful waiting has become Active surveillance
Hopeful message, life extending treatments are available,
have to monitor and adapt…be a warrior, you have value.
Thank You!
www.ustoo.org
1-800-80-Us TOO
(1-800-808-7866)
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Resources
•
•
•
•
SEER Stat Fact Sheets: Prostate Cancer
Centers for Disease Control-Prostate Cancer
What You Need To Know About™ Prostate Cancer
U.S. Preventive Services Task Force recommendation on
Screening for Prostate Cancer
• Straight Talk for African-American Men and Their Families
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