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.
I found USToo after my husband's protetectomy. It has given me an avenue to discuss my frustrations and helped me to adjust to the differences after treatment for prostate cancer. The men that share their struggles and ways of overcoming them have given us excellent advice. The women who share have helped me not to feel so alone in this journey. Prostate cancer is little understood and receives very little coverage in the news. That needs to change. People need to know that this is a serious disease that can threaten relationships. It is a couple's disease. We need to find ways to prevent it and to limit the effects of treatment. Everyone needs to know how to prevent aggressive cancer long before it can cast a shadow over their lives.
I found UsTOO, Lancaster, PA through their website right after I was diagnosed in 2004. They are a great bunch of people with a phenomenal amount of experience which they were very happy to share.
This became even more important when my PSA started to rise 6 months after surgery. Several member of the Executive Committee met with me and helped me sort out all my options. They had great advice and I am glad I took it.
Regrettably, I did not find out about UsToo until after I had been treated for prostate cancer in 2004. I began attending meetings at Beaumont Hospital in Royal Oak, MI. First, it was most reassuring to see so many others who had gone before, survived and thrived. I had been coping already, but this made the process of continuing recovery even better.
Secondly, it gave me the opportunity to talk to men newly-diagnosed and add my reassurance to help them though the process of dealing with PCa. They could see I was doing well physically and mentally, after seven years and no sign yet of recurrence. I could tell them of my treatment (external radiation) and they could use my experience to help them in making a treatment choice.
I was diagnosed with Prostrate Cancer in May 2010 and I was totally devastated. I checked with several of my trusted doctors for advise but my urologist was new to me. I did some immediate research on Google and found my local US T00 at the Mayo Clinic. I went to my first meeting just before my Radical Prost surgery and I am so glad that I went. I met many people(couples supporting their husbands) and I was able to make up my mind to do the surgery. Thank goodness for your organization!! Three months after my surgery, I went back to an US TOO meeting to try and help someone else make up their individual minds about surgery or chemo. Your organization is worth its weight in gold and helps many people. Thanks again.
The organization is doing a wery good job.As a prostate cancer patient I received very useful books and a lot of information about prostate cancer.They tried hard to reach many of us to help , to be an informen pacient
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.
Us TOO and their prostate pointers web have been critical to my journey in recovery from prostate cancer and the effects of "modern" treatment for it. I read their e-mail daily and get great benefit out of listening to others in my same boat - fellow sailors in the voyage. This forum has no equal.
I am a prostate cancer survivor and a volunteer helping other survivors through support groups. Us Too has been a fantastic source of information as well as inspiration. They always have the most up to date and understandable information on this disease and treatment options. In my work with other survivors, I have met literally hundreds of Us Too volunteers from all over the country. These volunteers are very active in advocacy, which is another strength of Us Too. They fight for funding for both research and patient services.