InterdisciplinaryInterdisciplinary Care and Care and Treatment Involves Treatment Involves Us TOOUs TOO

James Kiefert, EdDJames Kiefert, EdDChairman, Board of DirectorsChairman, Board of Directors

Us TOO InternationalUs TOO InternationalProstate Cancer Education and Support Network Prostate Cancer Education and Support Network

Why is Prostate Cancer Important?Why is Prostate Cancer Important?

One in every 6 men will be diagnosed with One in every 6 men will be diagnosed with Prostate Cancer in his lifeProstate Cancer in his lifeThere are slightly more cases of Prostate There are slightly more cases of Prostate Cancer diagnosed each year than Breast Cancer diagnosed each year than Breast Cancer (230,000 vs. 216,000, the top two annual Cancer (230,000 vs. 216,000, the top two annual cancer diagnoses) cancer diagnoses) An American man is 33% more likely to develop An American man is 33% more likely to develop Prostate Cancer than an American women is to Prostate Cancer than an American women is to get Breast Cancer get Breast Cancer 38 Million Baby-Boomers are aging and at risk38 Million Baby-Boomers are aging and at risk

Source: Prostate Cancer Foundation and American Cancer SocietySource: Prostate Cancer Foundation and American Cancer Society

The Numbers will Increase as the The Numbers will Increase as the Baby Boomers Age Baby Boomers Age

Despite advances, 30,000 deaths due to Despite advances, 30,000 deaths due to Prostate Cancer happen each year, that is 90 Prostate Cancer happen each year, that is 90 American men each day American men each day Within the next 10 years (2015), we will see an Within the next 10 years (2015), we will see an increase of nearly 70% to 50,000 deaths per increase of nearly 70% to 50,000 deaths per year year In the next 15 years, by 2020, the total number In the next 15 years, by 2020, the total number that die from PCa will be 650,000…more than that die from PCa will be 650,000…more than the number of men killed in all US wars in the the number of men killed in all US wars in the last 100 years (since 1900…642,352 deaths)last 100 years (since 1900…642,352 deaths)

Source: Prostate Cancer Foundation Source: Prostate Cancer Foundation

Us TOO International NetworkUs TOO International Network

Founded in 1990 by a group of Prostate Cancer Founded in 1990 by a group of Prostate Cancer Patients, still directed by patients and family Patients, still directed by patients and family members members

Network of Network of Support Groups Support Groups now is 320 and now is 320 and reaches 44 states and 10 countriesreaches 44 states and 10 countries

Us TOO Mission: Us TOO Mission: Communicate Timely, Communicate Timely, Personalized and Reliable Information Enabling Personalized and Reliable Information Enabling Informed Choices Regarding Detection and Informed Choices Regarding Detection and Treatment of Prostate CancerTreatment of Prostate Cancer

Us TOO International NetworkUs TOO International Network

Web based information and support at Web based information and support at www.ustoo.orgwww.ustoo.org 14 virtual communities on 14 virtual communities on Prostate Pointers and an e-newsletter Prostate Pointers and an e-newsletter Prostate Cancer NEWS You Can Use Prostate Cancer NEWS You Can Use

Hotsheet Hotsheet Monthly Newsletters: 22,000 Monthly Newsletters: 22,000 distributed through Support Groupsdistributed through Support Groups

The power of The power of “peer support” “peer support” and and “patient “patient directed care and treatment”directed care and treatment”

Detection and ScreeningDetection and Screening

The importance of “Know your PSA”The importance of “Know your PSA”

Outreach to people at higher riskOutreach to people at higher risk

““There are no side effects to a blood test There are no side effects to a blood test or a DRE”or a DRE”

Process of DiagnosisProcess of Diagnosis Family PractitionerFamily Practitioner Urologist, takes biopsyUrologist, takes biopsy

Diagnosis, Recommendations and Diagnosis, Recommendations and Treatment PlanningTreatment Planning

Post-biopsy exploration and additional Post-biopsy exploration and additional testing, second opinionstesting, second opinions

The “Gold Standard” recommendation: The “Gold Standard” recommendation: surgery and the pressure to act surgery and the pressure to act immediatelyimmediately

Feelings of shock and denialFeelings of shock and denial

More options exist now than ever beforeMore options exist now than ever before

Information Gathering and Decision Information Gathering and Decision MakingMaking

Patient and family information gathering Patient and family information gathering and informed decision-makingand informed decision-making

Need to make the “right” decision Need to make the “right” decision

The “added” burden of conflict-The “added” burden of conflict-recommendations, comments and recommendations, comments and relationshipsrelationships

On-going Treatment and Post-On-going Treatment and Post-Treatment Issues Treatment Issues

Treatment decisions continue, new Treatment decisions continue, new decision pointsdecision points

Life style challenges and changesLife style challenges and changes Stress, job issuesStress, job issues Diet and exerciseDiet and exercise Medication management and changesMedication management and changes Side effects, Patient expectations vs. Side effects, Patient expectations vs.

discussed typical outcomesdiscussed typical outcomes

Stepping up to the Growing Stepping up to the Growing ChallengeChallenge

Preparation and communication are essentialPreparation and communication are essential

New treatment approaches mean patients need New treatment approaches mean patients need involvement with educated Urologists and involvement with educated Urologists and OncologistsOncologists

Recognize the Baby Boom generation now Recognize the Baby Boom generation now entering high incidence ageentering high incidence age

Number diagnosed per year climbing to Number diagnosed per year climbing to 300,000/year in the next 10 years (+40%) 300,000/year in the next 10 years (+40%)

Source: Prostate Cancer FoundationSource: Prostate Cancer Foundation

Teamwork and CommunicationTeamwork and Communication

In my support group I hear men looking to In my support group I hear men looking to their physician “as the quarterback” of their their physician “as the quarterback” of their teamteam

Communication is essentialCommunication is essential

The burden of cancer is made worse when The burden of cancer is made worse when conflicting messages are presentconflicting messages are present

Making a Difference TogetherMaking a Difference Together

Look for Us TOO at Look for Us TOO at www.ustoo.orgwww.ustoo.org and at and at 1-800-80-UsTOO (1-800-808-7866)1-800-80-UsTOO (1-800-808-7866)

““Never doubt that a small group of Never doubt that a small group of thoughtful, committed citizens can change thoughtful, committed citizens can change the world; indeed, it's the only thing that the world; indeed, it's the only thing that ever has.”ever has.” Margaret Mead Margaret Mead