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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

I found USTOO when I was diagnosed with Prostate Cancer. Its Prostatepointers "RP" site was a tremendously valuable aid for me as I waded through all the information out there to try to come to a decision regarding what treatment option I should pursue.

Then, after my surgery, its
"PCAI" site was equally valuable (and continues to be) as I wrestled with the aftereffects of my surgery.

But most important to each of these sites is the camaraderie, knowledge, and spirit of giving and caring on the part of the people who regularly contribute to these sites.

The Great!

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

I've personally experienced the results of this organization in the way that I have approached my diagnosis and reaction to being diagnosed with prostate cancer. Without the support of the people and resources of USTOO it would have been a much more difficult journey for me.

Ways to make it better...

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

... the only suggestion I would make is to develop archive function for the PCAI portion of the prostatepointers website.

June 27, 2011

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June 27, 2011

when my father was dying with metastatic prostate cancer.. this organization was more helpful with suggestions on treatment than his doctors. I think he would have lived longer if I had been more forceful with the suggestions I received from this organization

The Great!

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

This organization was very helpful

Ways to make it better...

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

NONE!!!

June 27, 2011

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June 27, 2011

I attend monthly meetings of the Sun City West, AZ chapter of UsTOO. A great bunch of folks, husbands, wives, cancer survivors and people with Cancer who need help and support while making decisions for future treatment. Our leader is very knowlegable and very helpful with a library of books, websites and other resources that are helpful for our members. We have guest speakers, but the best meetings revolve around discussions, questions and answers. I can't thank the group enough for all of the help they have given me.

The Great!

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

being able to adjust to the fact taht I have cancer, but can still hope for a long and useful life.

Ways to make it better...

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

do nothing to change it, but encourage more friends and acquaintances with prostate cancer to attend the meetings and to spread the word of the group.

June 27, 2011

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June 27, 2011

US TOO is a excellent charitable organization that provides great information via web (hot sheets) and suppor groups in the fight against Prostate Cancer. I personally have participated in a local support group and have derived much satisfaction from the experience . I enjoy the camaraderie and knowledge sharing. US TOO seems to do an excellent job in promoting awareness.

The Great!

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

Use of their materials via web and local support group.

Ways to make it better...

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

None off the top of my head without me analysis.

More feedback...

How much of an impact do you think this organization has?

A lot

How did you learn about this organization?

Web & via a Local Cancer Org

When was your last experience with this nonprofit?

2011

June 27, 2011
1 person found this review helpful

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June 27, 2011
1 person found this review helpful

UsTOO provides a wealth of current information about prostate cancer as well as provides support for those individuals and families dealing with the disease. The UsTOO website is great and there are more than 300 UsTOO Chapters around the world which offer face-to-face support.
These Chapters
also sponsor various screening and informational events. No topic is sacred, UsTOO has information on virtually every aspect of the disease. Much of the information that I learned from this group was discussed with my doctor and often became part of my treatment.
I have recommended UsTOO to many individuals, including numerous doctors, and all have thanked me.

The Great!

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

I was diagnosed 10 years ago with aggressive, metastatic prostate cancer. Today, I still have my prostate, have no metastatic lesions, an undetectable PSA and a good quality of life. I was very fortunate to have discovered UsTOO as well as a great doctor. The comfort that I found from the information provided by fellow UsTOO participants has been immeasurable. In addition, I have examined the finances of the organization closely, and believe that it is well managed.

Ways to make it better...

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

The only change that I would make is to seek greater visibility and funding for the valuable work that UsTOO does.

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

The internet.

What, if any, change in your life has this group encouraged?

It helped give me hope when I thought there was none.

When was your last experience with this nonprofit?

2011

June 27, 2011

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June 27, 2011

We just learned my husband has prostate cancer, we were given a card from the urologist with the information about US Too. I went on the same day and it has been a world of help for us. It is great to have a place that you can connect with other people that are going through the same situation that you are. You can ask any question and share any feelings and know that someone out there has either been there or is going through the same thing. People on this site are so helpful and informitave and caring. I have learned so much and found so much relief from this site, there have been many nights I could not sleep since we found out, when that happened, I found myself turning on the computer and coming right to the US
TOO site for comfort and answers.

The Great!

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

Gaining information on prostate cancer

Ways to make it better...

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

There is nothing to change

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 found USTOO througg a web search. Received helpful info right away. I was newly diagnosed and frightened. Called a support group leader and this total stranger spent 45 minutes with me and left me with leads and some confidence in the future. Received excellent printed mterials two
days after requesting them.

The Great!

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

Getting information and providing support.

Ways to make it better...

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

Haven't found anything wanting yet.

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.

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