National Center for Health and the Aging

Transcription

1 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.

2 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 Atlanta: American Cancer Society.

3 Percentage of men (how many out of 100) who will get prostate cancer Prostate Cancer Risk by Age 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, Man s Current Age Time Period 10 Years 20 Years 30 Years 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, ,External Web Site Icon National Cancer Institute. Bethesda, MD,

4 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

5 Thomas Kirk President & CEO of Us TOO The Prostate Cancer Education and Support Network

6 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

7 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.

8 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.

9 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.

10 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 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.

11 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

12 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.

13 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 4 th 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)

14 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.

15 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.

16 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

17 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.

18 About Us TOO: Support, Education and Advocacy On-line and in-person support groups to learn to be 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

19 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 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

20 Us TOO Support Groups/Chapters 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

21 Making a Difference Together Share personal stories, talk about prostate cancer and 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

22 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 pdf

23 Wrap-up and Summary Men and women need to be empowered to handle this 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.

24 Thank You! Us TOO ( )

25 Q&A If you would like to ask the presenter a question please submit it through the questions box on your control panel If you are dialed in through your telephone and would like to verbally ask the presenter a question, use the raise hand icon on your control panel and your line will be unmuted.

26 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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30 Upcoming Symposium

31 Contact Us Karen Williams Director of Health James Field Deputy Director of Health Dr. Jose Leon Clinical Quality Manager Johnette Peyton, MS, MPH, CHES Manager of Research, Policy and Health Promotion Rachel Logan, MPH Training and Technical Assistance Warren Brown Resource Manager Joy Oguntimein, MPH Health Research and Policy Analyst Devon LaPoint Management Analyst Please contact our team for Training and Technical Support