Patient/Doctor Communication Thomas N. Kirk President & CEO Us TOO International PCESN September 11, 2010

The Us TOO peer-support Mission (SEA): Helping men and their families make informed decisions about prostate cancer detection and treatment through support, education and advocacy.

The way it is… Barriers: Many believe that self-worth is found through independence, hard work and self- sacrifice…”it is often hard to find time to go, its expensive and I doing alright without any help, what I don’t know won’t hurt me” Barriers: Many believe that self-worth is found through independence, hard work and self- sacrifice…”it is often hard to find time to go, its expensive and I doing alright without any help, what I don’t know won’t hurt me” We know it is hard to communicate from a needy position…”admit no weaknesses” We know it is hard to communicate from a needy position…”admit no weaknesses” Doctors and hospitals and insurance companies are intimidating Doctors and hospitals and insurance companies are intimidating Feelings interfere with open communication Feelings interfere with open communication Time is limited with the doctor and health care professionals Time is limited with the doctor and health care professionals “How bad am I screwed?” “How bad am I screwed?”

What we know… Your health is valuable and not a given…it can and often does disappear or can get away from you Your health is valuable and not a given…it can and often does disappear or can get away from you Cancer is scary and stressful but there is Hope Cancer is scary and stressful but there is Hope There is controversy about prostate cancer detection, diagnosis and treatment options There is controversy about prostate cancer detection, diagnosis and treatment options Communication is essential, you are not alone Communication is essential, you are not alone Cannot do it yourself, you can manage it as a CEO or Quarterback would, you need others Cannot do it yourself, you can manage it as a CEO or Quarterback would, you need others You “have to” assemble a team of those who are knowledgeable, helpful, open to talking and care about you You “have to” assemble a team of those who are knowledgeable, helpful, open to talking and care about you

Tips on How-to Communication involves all to be active and involved (avoid the impulse to withdraw and spare others pain or burden and expect your doctor and his staff to be active, attentive and open) Communication involves all to be active and involved (avoid the impulse to withdraw and spare others pain or burden and expect your doctor and his staff to be active, attentive and open) This will take work and time, you are worth it and so are your family members and friends This will take work and time, you are worth it and so are your family members and friends There is a flood of information out there now, find what you need, when you need it There is a flood of information out there now, find what you need, when you need it Ask questions and take people with you to appointments Ask questions and take people with you to appointments Do not hesitate to get second/multiple opinions Do not hesitate to get second/multiple opinions Prepare, prepare and prepare… Prepare, prepare and prepare…

A Peek into Us TOO August 20 th Anniversary Event Survey: Dr. Chodak N= 71: 59 men/12 women (more needed) N= 71: 59 men/12 women (more needed) 93% had localized disease at diagnosis93% had localized disease at diagnosis Q1: Did the doctor explain every accepted option for treating your disease? Q1: Did the doctor explain every accepted option for treating your disease? Yes 51% No 42% Not sure 5%Yes 51% No 42% Not sure 5% Q2: Did the doctor tell you the odds of getting each complication? Q2: Did the doctor tell you the odds of getting each complication? Yes 39% No 54% not sure 5% Yes 39% No 54% not sure 5% Q3: Did the doctor recommend a treatment or ask you to make a choice? Q3: Did the doctor recommend a treatment or ask you to make a choice? Recommendation 60% Choice 32% both 3% Recommendation 60% Choice 32% both 3%

What is out there to help… Us TOO has materials with suggested questions to ask the doctors on the Us TOO website, prepare what you want to ask and need to know Us TOO has materials with suggested questions to ask the doctors on the Us TOO website, prepare what you want to ask and need to know Us TOO has the Inspire Prostate cancer Social Community on its website as well as en - based group called Prostate Pointers Us TOO has the Inspire Prostate cancer Social Community on its website as well as en - based group called Prostate Pointers There are 12 local Us TOO groups in IL and can be found on the Us TOO webpage. There are 12 local Us TOO groups in IL and can be found on the Us TOO webpage. Toll free patient Helpline, we can help connect you to others with experience Toll free patient Helpline, we can help connect you to others with experience

Comprehensive web site

Thank You! Us TOO ( )