Us TOO was there when my husband was first diagnosed with PCa and they are still there 4 years later. Online groups are great but this is one group where we can talk face-to-face. There is always somebody available when either my husband or I just need a person who has experienced what we are going through. Great literature too.
The Us TOO organization is top-notch from President and CEO Tom Kirk right down to the local group facilitators. I've been volunteering with Us TOO since 2004. If anyone wants prostate cancer information, this is the place to go. The Us TOO International website is full of important information and the local groups make it possible to communicate with actual prostate cancer survivors. Need to find a group? Simply go to www.ustoo.org and click on "Find a Support Group Chapter Near You." To read the stories of prostate cancer survivors and the decisions they faced (and made), go to www.ustooflorence.org.
Review from CharityNavigator
I have been leading the Us TOO Florence, Oregon Chapter for seven years, ever since we became part of Us TOO International in 2004. This was after my initial treatment for prostate cancer and about mid-way between my secondary treatment for recurrence. My group benefited immediately from Us TOO's HOTSHEET, 8 pages of the latest in prostate cancer research and information. I personally benefited from the same information as we watched my PSA bounce around before beginning a very slow, but steady, rise. Keeping up with the latest research not only helped me, but others in the chapter who had their own needs. Another benefit with Us TOO affiliation is its Chapter Leader section on its website. This is full of valuable information for those of us who are dealing with men at ground level. The website is also filled with timely information that is easy to find and access for chapter members. To share the good things happening in different chapters, Terri puts out a terrific Chapter News that is full of those ideas and activities. I am really pleased with the support Us TOO International provides for chapter members and its chapter leaders.
Unfortunately, I found out about Us-Too after I had my Prostate Cancer treatment. I would have preferred to know about this organization far in advance of being treated. When I was diagnosed, it hit me like a freight train. I wasn't ready to hear that news. I stepped back, took a deep breath and started looking for answers. I immediately called my freinds that had gone thru the Prostate Cancer issue, I asked many questions. Then I had to make a decision on how to treat. With only a small amount of information, I decided to do the Radio Active seed implant. It's been two years, the cancer is gone. However, if i had it to do all over again, I would first attend several Us-Too meetings to gather information on what other men have done. I didn't like having to make the decision all by myself. The Us-Too group would have put my mind at ease.
At age 54 I was diagnosed with stage 4 Prostate cancer. It was also found in my lymph nodes. Not knowing anything about "prostate" I read, asked questions and was part of a steering committee that started our "Us TOO" local chapter. I have appreciated the opportunities to learn about this disease at many national and regional meetings. But the best always is the local support with others who are experiencing some of the same fearful, debilitating, and physically challenges that Prostate cancer brings. It is now 13 years and last week my Dr told me there is no sign of any cancer. The odds were that I would have a year and a half. This Support organization has brought courage and purpose to press on. I am so grateful to all who have helped "Us TOO" serve us so well.
UsToo has offered a way to connect to other support groups, to information about prostate cancer, to individuals who understand the full impact of a PCa diagnosis, not only on the patient, but also on his spouse or partner. As the facilitator for a women's support group, I am grateful for materials and opportunities for training that are always available on the UsTOO web site, and have been offered at conferences in Chicago last August and again this year. I look forward to discovering even more ways to help others cope with the stress of this disease at the August 19-20 UsTOO university. This organization is always ready to empower men and their families as they deal with prostate cancer.
I'm a prostate cancer survivor and member of a local chapter of Us TOO since my diagnosis in July 2008. I have benefited immensely through obtaining information concerning prostate cancer, in general, and, as a result, confirming my course of action. I researched the various options and discussed side effects with other survivors and came to the conclusion that proton beam therapy would be best for me. There were several other members of the chapter that provided me positive feedback concerning their experience. So far, all is well after almost 3 years. I have enjoyed the friendship of the chapter people and am very glad to contribute as best I can in providing information and allowing others to confidently make their own individual decisions on treatment.
I am a 65 year old Vietnam Veteran who got Prostate Cancer due to exposure to agent orange in Vietnam in 1969...as a combat Medic in the 101st Airborne Division I also suffered from PTSD..having Prostate Cancer from my Vietnam Service caused me to have numerous flashbacks and I found myself not only fighting the disease for Physical Survival but also fighting my now raw emotions of particularly fear and anger...and then I found via another Survivor ( as all men do!) a group of men ( with chapters all over the US) called Us Too...to Support, Educate, and Advocate (SEA) for men and their families who are battling this disease..it saved me emotionally and gave me a legacy worth living for as I now run a group in deep South Texas called Us Too McAllen..this would not have happened if it were not for Us Too International and a guy named Mike Jones who is now the Regional Director in Texas for Us Too...Thanks Mike and all those men and their loving spouses who support us on this life challenging and Life changing Journey...Bob
My name is Jack Wilson and I am the group leader of the UsTOO Northern Arizona support group. Men who are told they have prostate cancer typically do not know where to turn. UsTOO supports groups provides a place where questions and exerieences can be discussed openly. It helps to talk to people that have been down the same path you are starting on.
Everything Us TOO does is for men and thier families dealing with prostate cancer. It is the only organization dedicated ONLY to prostate cancer. It is an international organization comprised of dedicated volunteers who provide FREE education and support to all who ask. This international organization only has five paid employees. The other thousands are volunteers. The educational materials are developed by and for patients. Top medical personnel volunteer their services to make sure all publications meet the hightes standards of medical information.
Education is power. Men make informed decisions about their treatments based on experiences of others and good medical information.