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40 Reviews
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October 12, 2012

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October 12, 2012

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.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

July 1, 2012

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1 previous review
June 28, 2011

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 m... more

July 1, 2012

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.

Photos

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

June 28, 2011

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.

The Great!

I've personally experienced the results of this organization in...

I have seen first hand the relief that newly diagnosed men get during their very first meeting with us. I credit Us TOO's information and the sharing of prostate cancer experiences by men during the meetings as helping with that. Of course, it doesn't hurt that we have a urologist who meets with us on a regular basis. We have Us TOO's information, the sharing of personal experiences and a urologist to put it all together and make sense of it for us.

Ways to make it better...

If I had to make changes to this organization, I would...

Information-wise, I think Us TOO International is right on top. The only "wish" I have is that somehow local chapters would be covered under an umbrella liability insurance policy from Us TOO International. Right now, we are responsible for getting our own.

June 28, 2011

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June 28, 2011

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.

The Great!

I've personally experienced the results of this organization in...

I've referred several Prostate Cancer patients to this group.

Ways to make it better...

If I had to make changes to this organization, I would...

I would like to see more information attached to PSA and DRE results. The doctors should direct a person to this group for information that the patient could use to form a decision.

June 27, 2011
1 person found this review helpful

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June 27, 2011
1 person found this review helpful

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.

The Great!

I've personally experienced the results of this organization in...

Educational opportunity for the disease but also the social and psychological issues that face us daily. I also helped give presentations on end of life issues since my training is in theology and chaplaincy.

Ways to make it better...

If I had to make changes to this organization, I would...

I would encourage more couple and family issues to be addressed. Our wives find that their husbands have changed not only physically but emotionally. To help our wives understand some of these changes and to remind us men that our wives are a special gift who many times can be a hurting care giver is a focus that we are recently trying to address in our local chapter.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

What one change could this group make that would improve your volunteer experience?

We need a local newsletter and our could be exchanged with other groups. These would be a good resource and challenge for all local groups.

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

Most definitely.

How did this volunteer experience make you feel?

I look forward to our Steering Committee meetings and our monthly support group meetings.

When was your last experience with this nonprofit?

2011

June 27, 2011

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June 27, 2011

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.

The Great!

I've personally experienced the results of this organization in...

seeing men and their families make informed decisions about their treatments, thanks to information (printed materials, DVDs, live speakers).

Ways to make it better...

If I had to make changes to this organization, I would...

not make any changes at this time.

June 27, 2011

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June 27, 2011

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.

The Great!

I've personally experienced the results of this organization in...

I have personally involved in monthly meetings in Honolulu and Aiea, Hawaii. I have also participated in chapter information campaigns at seminars and instructional sessions.

Ways to make it better...

If I had to make changes to this organization, I would...

I would continue to press urologists and others in the medical community to have their patients seek others with the similar diagnosis to attend Us TOO chapter meetings.

June 27, 2011

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June 27, 2011

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

The Great!

I've personally experienced the results of this organization in...

I have seen men and their wives and care givers literally transformed as they become better captains of their own ships and more knowledgeable of the choices they need to make...all this done without a major sponsor or having to wait till the time was right...I am healthier and happier because of Us Too McAllen and this September will celebrate the 5th year of being Cancer Free as I attend the annual Survivorship Conference of MD Anderson Cancer Center in Houston...

Ways to make it better...

If I had to make changes to this organization, I would...

Integrate this type of support group into all the clinical practive "treatment" options for caregivers who treat prostate cancer so men and their wives can get the help they need on support at the time they have "suspicious findings" rather than after their treatment has begun...

June 27, 2011

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June 27, 2011

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.

The Great!

I've personally experienced the results of this organization in...

Interation with others sharing similar experiences makes it easier to choose treatment option.

Ways to make it better...

If I had to make changes to this organization, I would...

Include more online resources.

More feedback...

Would you volunteer for this group again?

Definitely

When was your last experience with this nonprofit?

2011

June 27, 2011

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June 27, 2011

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.

The Great!

I've personally experienced the results of this organization in...

The decisions I make with my medical team stem from information I received from others who have gone down the path before me. I know I am not alone. I meet compassionate warriors who what to "give back" by helping others.

Ways to make it better...

If I had to make changes to this organization, I would...

Provide funds to start new support groups in areas not now being served. There are large geographic areas where there is no support group. We need help starting up a group.

June 27, 2011

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June 27, 2011

This organization provides a great service to men with prostate cancer and their families.
Having support groups across the country is appreciated by all prostate cancer survivors.

The Great!

I've personally experienced the results of this organization in...

Talking with a number of cancer survivors.

Ways to make it better...

If I had to make changes to this organization, I would...

- Make a greater effort to assure that there will be, at the end, only one prostate cancer organization that will represent current and future survivors on the political scene.

More feedback...

Would you volunteer for this group again?

Likely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Okay

Would you recommend this group to a friend?

Likely

What one change could this group make that would improve your volunteer experience?

Get more involved with state wide organizations and medical institutions (especially those that sponsor the support groups) to help the cause as well as other survivors.

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

It showed me the need that these organizations need more survivors actively engaging in prostate cancer awareness, helping other survivors and their families.

How did this volunteer experience make you feel?

Frustrated.

When was your last experience with this nonprofit?

2011

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