July 25, 2011
Friends and Supporters of Us TOO,
During our on-going discussions a group of us could see a need for more new and current information on advanced prostate cancer. In response, I am pleased to say Us TOO International Prostate Cancer Education & Support Network created a new Advanced Prostate Cancer Resource Kit of material to help discuss advanced and advancing disease, provide an overview of treatment options, and identify side-effects.
Links to the kit and all materials can be found on the Us TOO web site at www.ustoo.org/ADK.
We challenged ourselves to create content that’s fresh, relevant, and specific to advanced prostate cancer—information that can’t be found anywhere else. So we assembled an advisory team of people active in Us TOO who have been directly affected by advancing prostate cancer. We sought to offer insight and advice based on what’s worked well for us or for someone we know personally. The group members have cut to the chase and shared their wisdom and experience specific to the issues faced by someone with advancing disease.
Advisory team members included: Fred Gersh, Russ Gould, Shirley Grey, RN, MSN, Jerry Hardy, Jim Kiefert, EdD, Kay Lowmaster, MSW, LCSW, Fred Mills, Charles “Snuffy” Myers, MD, Paul F. Schellhammer, MD, Kathy Scortino, RN, MA, LCPC, Chuck Strand, Us TOO staff Pam Barrett and me, as well as designer Charlie Sauer.
Included in the kit is the new brochure, Principles for Managing Advanced Prostate Cancer, which outlines “The 7 Principles of Empowerment” to provide the direction and knowledge necessary for people to self-manage their care.
The Advanced Prostate Cancer Resource Kit provides an interactive table of contents with links to all new and existing Us TOO content specific to advanced prostate cancer. Topics include charting and assessing disease state, evaluating treatment options, developing a treatment plan, and anticipating side effects. Additional topics cover the eventual need for an end-of-life plan along with the importance of being empowered daily through diet, exercise, spirituality and humor.
The comprehensive content is specific to advanced prostate cancer and can be used as a tool to help individuals seeking information and answers independently. It also serves as the framework to facilitate in-depth discussions at Us TOO support group meetings.
“Much can be done to manage advancing prostate cancer and maintain a high quality of life regardless of the disease state. But you have to take control of managing your disease,” noted Russ Gould, leader of the Bill Blair Chapter and its Mets Mavericks support group in Palatine, Illinois, that was formed to help those battling advanced prostate cancer. “Many of the men who attend our meetings have been successfully managing the treatment of their advancing disease for ten or 15 years; and a few for more than 20 years.”
The new Us TOO material emphasize the importance of empowering advanced prostate cancer patients to ask the right questions, to seek the opinion of more than one physician, and to never blindly trust the treatment recommendation from any single doctor. The materials feature treatment charts and graphs that can be personalized along with quotes, tips, and even some humor.
“The greatest benefit from this new information is the positive impact it will have on the lives of countless men and their caretakers who are battling advancing disease,” added Us TOO International Chairman of the Board Fred Mills. “After reading this material, many people will have new information that will inspire them to develop a more effective approach to managing their prostate cancer treatment. That’s the bottom line. That’s why we’re here.”
Production and distribution of the new advanced disease kit of materials was made possible through charitable donations from Novartis Oncology, AstraZeneca, Endo Pharmaceuticals, Veridex, Ferring Pharmaceuticals, GTx, Inc. and people like you.
Kits are available for individuals and support groups online or in hard copy form. Request hard copies from the Us TOO Online Information Request Center here: www.ustoo.org/advancedmaterials.
I hope you find this information valuable in decision making for advanced or advancing prostate cancer. Let us know what you think about it at www.ustoo.org/feedback.
Enjoy the summer,
President & CEO
Us TOO International