Us Too Prostate Cancer Education & Support Group GM Presentation 5/18.2006 R. Witherspoon 1

Us Too Prostate Cancer Education & Support GroupUs Too Prostate Cancer Education & Support GroupGM Presentation 5/18.2006GM Presentation 5/18.2006 R. Witherspoon R. Witherspoon 11


Us TOOUs TOO Prostate CancerProstate Cancer

Education and SupportEducation and SupportWm. Beaumont Hospital , Royal Oak, MIWm. Beaumont Hospital , Royal Oak, MI


About Us TOOAbout Us TOONo 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


About Us TOOAbout Us TOOGrassroots 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 InternationalUs TOO International 325 Chapter Support Groups Internationally325 Chapter Support Groups Internationally

295 United States 295 United States (44 states)(44 states)10 Canada10 Canada8 England 8 England 5 Scotland5 Scotland

1 each1 eachAustraliaAustraliaBahamasBahamasBarbadosBarbadosBelgiumBelgiumGermanyGermanyIndiaIndiaSpainSpain

Support Groups Provide:Support Groups Provide:

Regular meetings for men, their Regular meetings for men, their families & friendsfamilies & friends 22ndnd Tuesday of each month at 6:30pm at the Tuesday of each month at 6:30pm at the

Beaumont Royal Oak Administration BuildingBeaumont Royal Oak Administration Building

We provide personal information We provide personal information sharing from “survivors”; including sharing from “survivors”; including discussions on current prostate cancer discussions on current prostate cancer topicstopics

Outside speakers & physicians provide Outside speakers & physicians provide unbiased information related to:unbiased information related to:

Prostate cancer treatment optionsProstate cancer treatment options Diet, nutrition & researchDiet, nutrition & research Mental health, coping strategies and Mental health, coping strategies and

moremore



Overview & Statistics Overview & Statistics

Early DetectionEarly Detection

New DiagnosisNew Diagnosis

Treatment OptionsTreatment Options

Post-Treatment IssuesPost-Treatment Issues

Experienced a Relapse or,Experienced a Relapse or,

Advanced DiseaseAdvanced Disease

Clinical Trials & StudiesClinical Trials & Studies

Emerging TreatmentsEmerging Treatments

Special News for African Special News for African American MenAmerican Men


Our Our Hot SheetHot Sheet monthly newsletter monthly newsletter highlights the latest in treatment highlights the latest in treatment strategies as well as emerging strategies as well as emerging treatmentstreatments

22,000 monthly 22,000 monthly HotSheetHotSheet newsletters are distributed through newsletters are distributed through our Support Groupsour Support Groups

Regular Online updates are availableRegular Online updates are available

Also, Us TOO distributes Prostate Also, Us TOO distributes Prostate Cancer Cancer NEWS You Can UseNEWS You Can Use via email via email to interested subscribers. Topics to interested subscribers. Topics highlight latest news of interest to highlight latest news of interest to patients and concerned otherspatients and concerned others


Other Helpful Resources for FamiliesOther Helpful Resources for FamiliesUs TOO InternationalUs TOO International 1/800/808-78661/800/808-7866

National Cancer InstituteNational Cancer Institute1/800/422-62371/800/422-6237

Cancer Care Cancer Care 1/800/813-46731/800/813-4673

Cancer Hope NetworkCancer Hope Network1/877/467-36381/877/467-3638

Cancer Information Service & Counseling LineCancer Information Service & Counseling Line1/800/525-37771/800/525-3777

Patient Advocate FoundationPatient Advocate Foundation1/800/532-52741/800/532-5274

Be careful of Be careful of information overloadinformation overload and and “dot com “dot com websites”websites” Vs Vs “dot ORG”“dot ORG”


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:HelplessnessGuiltShameIsolationAnxiety

Anger SadnessFearGriefAnd Possibly Blame


Monthly meetings provides peer-to-peer support Monthly meetings provides peer-to-peer support for patients and familiesfor patients and families

We focus on We focus on ““peer supportpeer support”” and and ““patient directed patient directed care and treatmentcare and treatment””

Provide patient and family information gathering for Provide patient and family information gathering for informed decision-makinginformed decision-making

This includes the need to make the This includes the need to make the “right”“right” decision! decision!

Support also includes, Support also includes, PrePre and and PostPost procedure procedure support for:support for:

Newly diagnosedNewly diagnosed patients (pre-treatment) patients (pre-treatment) Patients Patients in treatmentin treatment andand Post treatmentPost treatment support support And And re-occurrence re-occurrence


Monthly meetingsMonthly meetings

Includes “partnering” with a survivor with Includes “partnering” with a survivor with ““like like

procedure”procedure” (pre through post treatment). (pre through post treatment).

Caregiver supportCaregiver support for family members, including, wives, for family members, including, wives,

family members and partners.family members and partners.

The added burden of cancer is sometimes made worse The added burden of cancer is sometimes made worse

by by conflictingconflicting messagesmessages from family, friends and co-from family, friends and co-

workers… workers… Positive Attitudes Only Through These Doors…Positive Attitudes Only Through These Doors…

Chose information carefully, i.e., Chose information carefully, i.e., Us TOOUs TOO and your and your

doctor doctor VsVs Internet sources Internet sources

Us TOO VolunteersUs TOO Volunteers also gives one-on-one support and also gives one-on-one support and

local health fairs & community health activitieslocal health fairs & community health activities


One in 6 of the 39 million Baby Boomer men translates One in 6 of the 39 million Baby Boomer men translates to 6.6 million men at risk and in need of screening, to 6.6 million men at risk and in need of screening, information and support.information and support.

Despite advances, 30,000 deaths due to Prostate Despite advances, 30,000 deaths due to Prostate Cancer happen each year, that is 90 American men each Cancer happen each year, that is 90 American men each day.day.

Within the next 9 years (2015), we will see an increase Within the next 9 years (2015), we will see an increase of nearly 70% to 50,000 deaths per year.of nearly 70% to 50,000 deaths per year.

In the next 14 years, by 2020, the total number that die In the next 14 years, by 2020, the total number that die from PCa will be 650,000. More than the number of men from PCa will be 650,000. More than the number of men killed in all US wars in the last killed in all US wars in the last 100 years100 years (since 1900… (since 1900…642,352 deaths).642,352 deaths).

The Numbers Will Increase as The Baby Boomers AgeThe Numbers Will Increase as The Baby Boomers Age 39 Million Baby-Boomers are aging and at risk39 Million Baby-Boomers are aging and at risk


Earl WoodsEarl Woods74, father of Tiger Woods, 74, father of Tiger Woods, dies of cancer at age 74 at dies of cancer at age 74 at his home in Cypress his home in Cypress California.California.

Earl Dennison Woods was Earl Dennison Woods was born March 5, 1932, in born March 5, 1932, in Manhattan, Kan., raised there Manhattan, Kan., raised there and went to college there — and went to college there — at Kansas State.at Kansas State.

He was granted a scholarship at Kansas State as a baseball catcher. At 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). 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 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 stayed 20 years. He did two tours of duty in Vietnam and attained the rank of lieutenant colonel in the Green Berets. of lieutenant colonel in the Green Berets.

Mr. Woods had heart problems, diabetes and poor circulation in his legs. 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.His prostate cancer returned in 2004. He passed away on May 3, 2006.


Every hour in the United States, three African American Every hour in the United States, three African American

men are told they have prostate cancer. men are told they have prostate cancer.

In less than 100 minutes, another African American In less than 100 minutes, another African American

man will die from the disease. man will die from the disease.

In the single decade of the 1990’s, prostate cancer In the single decade of the 1990’s, prostate cancer

killed about 350,000 men, slightly more than the entire killed about 350,000 men, slightly more than the entire

population of Cincinnati, Ohio.population of Cincinnati, Ohio.

Is prostate cancer a more aggressive disease in African Is prostate cancer a more aggressive disease in African

Americans? Or, is the outcome due to medical access Americans? Or, is the outcome due to medical access

and treatment information? and treatment information?

A Special Message for African A Special Message for African American Men about Prostate Cancer.American Men about Prostate Cancer.


So, what are the signs and SymptomsSo, what are the signs and SymptomsEarly-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 Pelvic pain

Frequent need for urination Frequent need for urination

Difficult or painful urination Difficult or painful urination

Loss of appetite & weight Loss of appetite & weight

Blood in the urine Blood in the urine

Painful ejaculation & Painful ejaculation &

Bone pain Bone pain


RecommendationsRecommendationsEstablish a ‘Establish a ‘baselinebaseline’ PSA value ’ PSA value and get annual examinations:and get annual examinations:

By age By age 4040 for African American for African American men men andand men with a family men with a family history of prostate cancer.history of prostate cancer.

No later than age No later than age 45 45 for all other for all other men.men.

Annual prostate exams should Annual prostate exams should include:include:

PSAPSA (Prostate Specific Antigen) (Prostate Specific Antigen) blood test, plusblood test, plus

DRE DRE (Digital Rectal Exam)(Digital Rectal Exam)

1.1. Make it a calendar event so Make it a calendar event so you remember!you remember!( Birthday, Father’s Day, or, ( Birthday, Father’s Day, or, September which is Prostate September which is Prostate cancer Awareness Month).cancer Awareness Month).

2.2. Know your PSAKnow your PSA – Keep a – Keep a record of the record of the exact exact numbersnumbers, not just that it is , not just that it is ““in the normal range?in the normal range?””

3.3. Track changes in your PSATrack changes in your PSA

An increase of 0.75 (An increase of 0.75 (25%)25%) or or more is a red flag – see your more is a red flag – see your doctor for follow-up.doctor for follow-up.


Us TOO believes that following Us TOO believes that following these recommendations will these recommendations will detect prostate cancer earlier, detect prostate cancer earlier, decrease deaths from it, and decrease deaths from it, and improve quality of life.improve quality of life.

Earlier detected disease is Earlier detected disease is more easily and effectively more easily and effectively treated.treated.

The benefits of The benefits of early detectionearly detection and treatmentand treatment outweigh the outweigh the cost and inconvenience of late cost and inconvenience of late treatment.treatment.

Benefits are in the form of Benefits are in the form of reduced overall cost and reduced overall cost and increased effectiveness of increased effectiveness of treating the disease.treating the disease.

Prostate Health RecommendationsProstate Health RecommendationsPreparation and communication are Preparation and communication are essential.essential.

Despite advances, 30,000 deaths due to Despite advances, 30,000 deaths due to Prostate Cancer happen each year, that Prostate Cancer happen each year, that is 90 American men each day.is 90 American men each day.

Recognizing the Baby Boom generation Recognizing the Baby Boom generation is entering the is entering the high incidence agehigh incidence age, more , more presence in the national media is presence in the national media is needed. needed.

There 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 Cancer (230,000 Vs. 216,000, the top two cancer diagnoses). An American two cancer diagnoses). An American man is 33% more likely to develop man is 33% more likely to develop Prostate Cancer than an American Prostate Cancer than an American women is to get Breast Cancer.women is to get Breast Cancer.


“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

Making a Difference TogetherMaking a Difference Together

““Early Detection Is The Cure!”Early Detection Is The Cure!”

Us Too Prostate Cancer Education & Support GroupUs Too Prostate Cancer Education & Support GroupBeaumont, Royal OakBeaumont, Royal Oak Rev: 5/3/2006 Rev: 5/3/2006 R. WitherspoonR. Witherspoon

CaregiversCaregiversProstate cancer is a disease of the Prostate cancer is a disease of the patientpatient, , the partnerthe partner or or spousespouse, and the , and the familyfamily. While the patient experiences . While the patient experiences cancer in their body, those closest to the patient have an cancer in their body, those closest to the patient have an experience of prostate cancer that is very real. experience of prostate cancer that is very real.

The challenges of the caregiver may not show up on a lab The challenges of the caregiver may not show up on a lab chart or test result, yet they are often equally painful and chart or test result, yet they are often equally painful and traumatic. Their experience can leave them feeling helpless, traumatic. Their experience can leave them feeling helpless, confused and alone. confused and alone.

Their lives are also dramatically impacted by the diagnosis Their lives are also dramatically impacted by the diagnosis and treatment of prostate cancer. They too, experience the and treatment of prostate cancer. They too, experience the treatments, the doctor visits, interrupted sleep, sadness, treatments, the doctor visits, interrupted sleep, sadness, fear and grief. fear and grief.


CaregiversCaregiversDiagnosis:Diagnosis: Diagnosis can be a very stressful and emotional Diagnosis can be a very stressful and emotional time for the patient and those people who stand beside him. time for the patient and those people who stand beside him. Days, weeks and even months later, diagnosis can feel like a Days, weeks and even months later, diagnosis can feel like a blur. Information overload is very common. blur. Information overload is very common.

Treatment:Treatment: Treatment can be a long and challenging Treatment can be a long and challenging process. Simply becoming aware of treatment options then process. Simply becoming aware of treatment options then making a decision can be overwhelming in itself. What is making a decision can be overwhelming in itself. What is your role in treatment decisions and in HIS course of your role in treatment decisions and in HIS course of treatment? treatment?

Living with Prostate Cancer:Living with Prostate Cancer: You may not have cancer in You may not have cancer in your body, yet you are experiencing cancer. You are your body, yet you are experiencing cancer. You are experiencing experiencing stressstress, , uncertainlyuncertainly, , anxietyanxiety just like him, and just like him, and this impacts your body’s well-being too. How do you cope this impacts your body’s well-being too. How do you cope with the uncertainty and interruption in your life?with the uncertainty and interruption in your life?


CaregiversCaregiversRecovery:Recovery: Every patient hopes for recovery. After Every patient hopes for recovery. After prostate cancer, how do you return to “normal”? Has prostate cancer, how do you return to “normal”? Has “normal” changed? Has your relationship changed? Your “normal” changed? Has your relationship changed? Your outlook? Your hopes? When does hopeful living return?outlook? Your hopes? When does hopeful living return?

Advanced Disease:Advanced Disease: Sometimes recovery is not possible Sometimes recovery is not possible and the cancer progresses. Sadly, for some, thoughts of and the cancer progresses. Sadly, for some, thoughts of recovery turn to questions of care and hospice. recovery turn to questions of care and hospice.

How do you respond to these decisions and make peace How do you respond to these decisions and make peace with the potential outcome? with the potential outcome?



Prostate Cancer Overview & StatisticsProstate Cancer Overview & Statistics

The causes of prostate cancer are not fully understood, The causes of prostate cancer are not fully understood, although it is believed that multiple factors can contribute to although it is believed that multiple factors can contribute to your overall risk, including your family background, ethnicity, your overall risk, including your family background, ethnicity, diet, and environmental factors.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.


Prostate Cancer Overview & StatisticsProstate Cancer Overview & Statistics

Age:Age: This is the strongest risk factor for prostate cancer. This is the strongest risk factor for prostate cancer. The disease is rare in men younger than 45, but the The disease is rare in men younger than 45, but the chance of getting it goes up sharply as a man ages.chance of getting it goes up sharply as a man ages.

Family history:Family history: A man’s risk of prostate cancer is higher A man’s risk of prostate cancer is higher than average if his brother or father had the disease.than average if his brother or father had the disease.

Race:Race: Prostate cancer is more common in African Prostate cancer is more common in African American men. It is less common in Asian and American American men. It is less common in Asian and American Indian men.Indian men.


Every year over 232,090 men are diagnosed with Every year over 232,090 men are diagnosed with prostate cancer, and about 30,350 die. If detected early, prostate cancer, and about 30,350 die. If detected early, prostate cancer is often treatable. prostate cancer is often treatable.

1 in 6 men is at a lifetime risk of prostate cancer 1 in 6 men is at a lifetime risk of prostate cancer

A man with one close relative with the disease has A man with one close relative with the disease has double the risk. With two close relatives, his risk is five-double the risk. With two close relatives, his risk is five-fold. With three, the chance is 97%. fold. With three, the chance is 97%.

Two men every five minutes are diagnosed with Two men every five minutes are diagnosed with prostate cancer. prostate cancer.

Risk begins to increase significantly at age 50 for white Risk begins to increase significantly at age 50 for white men and at age 40 for African-American men men and at age 40 for African-American men

StatisticsStatistics


African-American men are more likely than whites to African-American men are more likely than whites to develop prostate cancer, whereas many Asian develop prostate cancer, whereas many Asian populations have the lowest rates of prostate cancer. populations have the lowest rates of prostate cancer.

African American males have a prostate cancer incidence African American males have a prostate cancer incidence rate up to rate up to 60% higher60% higher than while males and than while males and double the double the mortalitymortality (death) rate of white males. Every 100 minutes (death) rate of white males. Every 100 minutes an African American male dies from prostate cancer. an African American male dies from prostate cancer.

Prostate cancer is the fourth leading cause of death Prostate cancer is the fourth leading cause of death among African American men over the age of 45. among African American men over the age of 45.

Diets high in fat may increase your risk of prostate cancer Diets high in fat may increase your risk of prostate cancer by increasing testosterone, which stimulates prostate cell by increasing testosterone, which stimulates prostate cell growth growth

Is prostate cancer a more aggressive disease in African Is prostate cancer a more aggressive disease in African Americans? Or, is the outcome due to medical access Americans? Or, is the outcome due to medical access and treatment information?and treatment information?

StatisticsStatistics


The ProstateThe 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.


Where is the prostate and what does it do?Where is the prostate and what does it do?The prostate is a small gland The prostate is a small gland located at the bottom of the located at the bottom of the bladder, surrounding the topmost bladder, surrounding the topmost section of the urethra, the tube section of the urethra, the tube that drains urine from the bladder that drains urine from the bladder

It produces prostatic fluid It produces prostatic fluid

It’s connected to the seminal It’s connected to the seminal vesicles, which produce fluid that vesicles, which produce fluid that mixes with prostatic fluid to form mixes with prostatic fluid to form semen, the substance in which semen, the substance in which sperm is transported sperm is transported

Tubes from the testicles carry Tubes from the testicles carry sperm to the prostate where the sperm to the prostate where the sperm are mixed with semen sperm are mixed with semen


A Healthy ProstateA Healthy Prostate

Cells make up all of your body’s tissues and organs, Cells make up all of your body’s tissues and organs,

including the prostate. Normally, cells within the including the prostate. Normally, cells within the

prostate grow, divide, interact, and die to make sure prostate grow, divide, interact, and die to make sure

the prostate functions properly. Cells within the the prostate functions properly. Cells within the

prostate are held together tightly and when cells prostate are held together tightly and when cells

growing within the prostate bump into each other, growing within the prostate bump into each other,

they normally stop growing or die off to make room they normally stop growing or die off to make room

for new cells.for new cells.


Prostate CancerProstate CancerProstate cancer cells have Prostate cancer cells have lost control and grow on lost control and grow on top of each other, forming top of each other, forming a tumor. Cancer cells can a tumor. Cancer cells can also break away from the also break away from the prostate and travel prostate and travel throughout your body, throughout your body, attach to other tissues, attach to other tissues, and continue to grow, a and continue to grow, a process called metastasis.process called metastasis.

What causes normal prostate cancer cells to become What causes normal prostate cancer cells to become cancer cells isn’t fully understood, but it involves a cancer cells isn’t fully understood, but it involves a disruption of the processes that control normal cell growth disruption of the processes that control normal cell growth and death.and death.


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.

Prostate cancer incidence and mortality rates are based on 2003-2004 estimates by the American Cancer Society

Important Facts Every African American Should Important Facts Every African American Should Know About Prostate Cancer.Know About Prostate Cancer.


Documents

Us Too Prostate Cancer Education & Support Group GM Presentation 5/18.2006 R. Witherspoon 1