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June 27, 2011

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June 27, 2011

I discovered this organization AFTER I had a radical prostatectomy. I wish I had learned about it before. Someone newly diagnosed can learn about treatment alternatives, competent local surgeons, possible outcomes and get a much better idea of how to proceed than from the diagnosing physician and/or a few acquaintances who have had the disease.

I would have selected a different location for treatment and possible a different treatment had I had the benefit of the wisdom of this group.

The Great!

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

I attend meetings - share experiences.

Ways to make it better...

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

Just keep it going!!!

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?

an acquaintance

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

hard to define

When was your last experience with this nonprofit?

2011

June 27, 2011

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June 27, 2011

I found this site 18 months after my radical prostatectomy. I wish I had found it 8 days after! The users of this site have been incredibly responsive to my questions, and their replies are always thoughtful. Almost everyone who contributes information is careful to attribute sources or say that it's opinion rather that research-based. From the very first time I submitted a question and had answers within a matter of hours, I knew this community was compassionate, caring, nurturing and affirming. I've learned much more in the past couple of months than I have from my surgeon who's been seeing me every 3 months for the past two years!

The Great!

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

I'm much more familiar now than ever before with research-based information on erectile dysfunction, the types and efficacy of treatments, and referrals to ED specialists.

Ways to make it better...

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

make it much more widely known! One out of six men in the U.S. is diagnosed with prostate cancer. That's a lot of men wondering what to do before, and what to do after the treatment they've selected.

June 27, 2011

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June 27, 2011

I WAS DIAGNOSED WITH PROSTATE CANCER IN AUGUST 2006 . I HAD SEED IMPLANTS IN DEC. 2006 . I HAVE HAD NO SIDE EFFECTS UNFORTUNATELY , AFTER REACHING A NADIR OF .2 IN 2009 MY LAST THREE PSA 'S HAVE RISEN SLIGHTLY. IN APRIL OF THIS YEAR IT REACHED .8 . I WILL HAVE ANOTHER PSA IN JULY AFTER A MONTH OF CIPRO. I TRULY APPRECIATE ORGANIZATIONS LIKE US TOO , SEEDPODS , AND OTHERS FOR THEIR SUPPORT AND I WILL CONTINUE TO ANTICIPATE THEIR FUTURE SUPPORT IN OUR FIGHT AGAINST THIS DISEASE.

The Great!

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

ADVICE ABOUT P CA

Ways to make it better...

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

JUST CONTINUE TO DRAW UPON THEIR RESOURCES AND SUPPORT

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

I am status post high dose conformal radiation plus a year of Zoladex in 2006. I was steered to Us Too's local chapter and have been receiving the 8 pg monthly leaflet now from the national packaged with the local chapter's two page leaflet. I am thus apprised what is going on in prostate cancer research and treatment from both the national and local level. I am glad there are these efforts being sustained on a continuing basis. I believe the information is from reliable experts in the field. I can give Us TOO a positive vote for their efforts. I currently have a near zero PSA.

The Great!

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

The chief results of my interactions are to remain informed about my diagnosis in the event it recurs.

Ways to make it better...

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

schedule more informative meetings with treatment and research authorities at the local level.

June 27, 2011

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June 27, 2011

My name is Manuel "Manny" Vazquez from the Houston, TX, area.
Us TOO International has been invaluable to me, both at the local Houston, TX, chapter. named Tex Us TOO, and the parent organization, Us TOO International, Inc. Both my local and the national chapters have been invaluable to me,
providing information and support. I, in turn, have been able to help many others that eventually came on board. Without Us TOO, my life after prostate cancer would have been very rough. We can help each other out in our capacity of "Professional Survivors". Medical professionals are very good at what they do in terms of therapies. However, with very few exceptions, they are absolutely unable or unwilling to deal with the consequences of those therapies. We can complement each other addressing the "whole man" , not just a diseased gland.

The Great!

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

The invaluable aid that can be given to men with prostate cancer in this country and abroad.

Ways to make it better...

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

All things can be improved. However, I am very satisfied with the Mission and Vision of Us TOO International, Inc.

More feedback...

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

Life-changing

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?

Through word of mouth

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

Acceptance of your condition and the tools to overcome the side effects of prostate cancer.

When was your last experience with this nonprofit?

2011

June 27, 2011

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June 27, 2011

US Too International has been a huge help to my husband and myself as we have gone through the prostate cancer journey. There is help for everyone on this site - those who are spiritual, those who want facts, those who want very personal and useful information about intimacy, and every other aspect of this very trying disease. It is the one site we recommend to friends who are newly diagnosed. It seems like the best thing we can do for them.

The Great!

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

Making decisions every day about how to live with cancer and treatment.

Ways to make it better...

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

They should toot their own horn more!

June 27, 2011

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June 27, 2011

I am six months post operative from prostate cancer, traditional open radical prostatectomy and have found this support group to be very informative, supporting and has provided me with the guidance I need for on going recovery. With the support of Prostate Pointers discussion communities I have the knowledge to address my physicians questions and provide them with information I may have not addressed without the help of this community.

The Great!

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

Recovery and rehabilitation techniques that I wouldn't have considered without them.

Ways to make it better...

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

Get more local groups started within my region.

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.

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