When diagnosed with prostate cancer, the feeling can be very isolating. Other men you know seem healthy and vibrant; surely they don’t have prostate cancer. Or, perhaps, you’re the spouse/partner or family member of a man who has been diagnosed with prostate cancer. Who can you turn to when you have questions or need to lean on those that understand?
Us TOO International Prostate Cancer Education & Support Network (Us TOO) was founded for you: the man diagnosed with prostate cancer. For you: the family member of a man diagnosed with prostate cancer. Us TOO was founded by men diagnosed with prostate cancer and it is an invaluable resource for those that have been touched by this disease.
In 1990, Dr. Gerald Chodak, a Chicago urologist, reached out to his prostate cancer patients to gauge interest in forming a support group for men living with prostate cancer. John DeBoer, Edward von Holst, Edward Kaps, John Moenck and Vincent Young were the founding members of what came to be known as Us TOO. By the end of 1990, there were four groups across the nation helping those affected by prostate cancer.
In the following years the number of support groups grew. The group secured 501(c)(3) status, met with pharmaceutical companies, and continued expanding across the United States and Canada. The mission of Us TOO is to provide hope and improve the lives of those affected by prostate cancer through support, education and advocacy/awareness. Their vision is a world without prostate cancer suffering.
The early days of Us TOO has grown into the website UsTOO.org and opportunities to learn and be supported both online and off This resource provides men with a prostate cancer diagnosis the ability to connect with others, gain information from experts in the field of prostate cancer, and to find comfort in the power of knowledge.
In addition to offering online prostate cancer support communities, Us TOO also offers phone support groups, in-person support groups, newsletters, and an Us TOO Prostate Cancer HelpLine, which promises, “Someone to talk to … who understands.” They provide information about free PSA (Prostate-Specific Antigen) testing, financial assistance, and prescription assistance. They have online support and information found on social media sites like Facebook, Twitter, LinkedIn, and YouTube.
For the man going down the path of being diagnosed with prostate cancer, UsTOO.org has a page that outlines the ways to diagnose prostate cancer, staging of prostate cancer, and what to expect in the days following a diagnosis. It provides helpful questions to ask of your doctor, how to live and act with your new prostate diagnosis, and how to find support.
For men with advanced prostate cancer, they offer, “accurate, unbiased information that’s most relevant and most useful to helping to develop informed decisions for effectively managing advancing prostate cancer.” They trust that you know the preliminary info, so they provide information on how to manage your advanced cancer, hormone therapy, bone health, and even a guide for the partner of a man with advanced prostate cancer.
Clinical trials are covered within this site. They tell you how to locate them, which hospitals and cancer centers house prostate cancer experts, as well as trials outside of the United States. They give you common clinical trial terms, and outline the different types of clinical trials.
While a prostate cancer diagnosis can be devastating, UsTOO.org provides a site that is comprehensive, thorough, and will guide and calm overwhelmed minds of men and their families with the reassurance that there is someone who understands.
Support is such an important part of navigating any medical issue, so HPS will continue to Spotlight support and advocacy groups that help men and their families navigate prostate cancer. Check back on the blog for more spotlights soon!