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Us TOO International Prostate Cancer Education and Support Network

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Nonprofit Overview

Causes: Cancer, Health

Mission: The mission of Us TOO International is to be the leading prostate cancer organization helping men and their families make informed decisions about prostate cancer detection and treatment through support, education and advocacy.

Programs: In addition to the following list of Us TOO educational resources and support services, there are more than 200 support groups throughout the U.S. and abroad that also help men and their spouses/partners and families make informed decisions about prostate cancer detection, treatment options and related side effects. - Us TOO website (www.ustoo.org) - Inspire online prostate cancer communities (UsTOO.inspire.com) - Toll-free Us TOO Prostate Cancer HelpLine (1-800-808-7866); including matching callers with similar survivors for peer-to-peer conversations - Support group services & telephone support group - Monthly Hot SHEET newsletter - Frequent 'News You Can Use' updates and articles - Educational content – digital and printed - Educational events and presentations - Awareness through special events like the SEA Blue Chicago Prostate Cancer Walk & Run and numerous local events across the country - Chapter News - Support group leader resources web page - New! - Educational video from a Community Conversation on Prostate Cancer - New! - Military veterans resources – Agent Orange information web page - New! - Anxiety & depression educational content – Coming soon!

Community Stories

44 Stories from Volunteers, Donors & Supporters

Board Member

Rating: 4

Hello myself dr Dinesh Shah 66 yrs old recently detected having prostatic cancer aggressive type .l m much confused to take what type of therapy should I choose

Volunteer

Rating: 5

Terrific organization! I was diagnosed with prostate cancer and started to attend their meetings and realized that I was not alone with this dreaded disease. The meetings totally changed my attitude and I am currently a 7 1/2 year survivor. Because of this I have become the chapter leader in the Buffalo area and greatly enjoy my volunteer duties with this organization. I highly recommend people with prostate cancer to look into the great work that these support groups perform

1

Volunteer

Rating: 5

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.

1

Volunteer

Rating: 5

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

Previous Stories

Volunteer

Rating: 5

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.

Client Served

Rating: 4

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.

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.

Craig P.

Client Served

Rating: 5

When I was diagnosed with advanced prostate cancer in 2009 I knew absolutely nothing about prostate cancer, its treatment, my prognosis, or that even more men in the US are diagnosed each year with it than women diagnosed with breast cancer. Us TOO has been an invaluable resource for educating myself so I can make informed decisions as I live the remainder of my life with this disease. Even more importantly, Us TOO has a panoply of resources and activities to help me educate and advocate on behalf of others, as well as to reach out and "be there" for individual men with prostate cancer, who are just beginning their journey.

General Member of the Public

Rating: 5

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.

1

General Member of the Public

Rating: 5

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
Les

Volunteer

Rating: 5

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.

2

Client Served

Rating: 5

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.

Client Served

Rating: 5

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.

1

Volunteer

Rating: 5

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.

Doug K.

General Member of the Public

Rating: 5

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.

Client Served

Rating: 5

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

General Member of the Public

Rating: 5

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.

General Member of the Public

Rating: 4

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.

1

Client Served

Rating: 5

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.

Kathy S.

Client Served

Rating: 5

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.

Volunteer

Rating: 5

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.

Client Served

Rating: 5

.

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.

Volunteer

Rating: 4

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.

Client Served

Rating: 4

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.

Client Served

Rating: 5

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!

General Member of the Public

Rating: 5

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.

Volunteer

Rating: 5

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

Jack W.

Volunteer

Rating: 4

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.

John L.

Client Served

Rating: 4

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.

Client Served

Rating: 5

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.

Client Served

Rating: 5

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.

General Member of the Public

Rating: 5

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.

Jim K.

Volunteer

Rating: 5

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.

WGMB

Volunteer

Rating: 3

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.

Client Served

Rating: 5

There is no way I could begin to relate all the ways UsTOO International has helped me to battle my prostate cancer. The insights and information I have received from the truly caring doctors, like Dr. Strum, et al, advocate, Chuck Maack, and other fellow cancer victims, have given me the necessary information to continue this endless battle.

Client Served

Rating: 5

After being diagnosed with Protate Cancer, I spent a lot of time perusing various sites on the internet for info on PCa. Not only did the Us TOO site provide what seemed to be a lot of level headed info

Over the months, I have come across various sites that while once current, the interest in maintaining the site has dropped off or they have an agenda. This does not appear to be the case with the US TOO site.

They also maintain the ProtatePointer mailing lists (over a dozen different topics).

Volunteer

Rating: 5

I was diagnosed with prostate cancer in 1998 at the age of 52 and thought it was the end of the world. Luckily I soon found the Us Too organization with its abundance of information on prostate cancer and treatment options. The impressive thing about the national Us Too organization is that the information it provides is cutting edge. At the local monthly Us Too Chapter meetings (about 400 chapters around the country), there are volunteers and other prostate cancer survivors ready and willing to speak with you about your particular situation. They have a wealth of experience with all aspects of prostate cancer, and can give you the added perspective you need to make an informed treatment decision.

Volunteer

Rating: 5

Us Too has sponsored my prostate cancer support and education group for many years. They have provided extremely valuable information and publications to our members. They have also helped to sponsor various symposiums dealing with prostate cancer. Their basic objective is to provide information to prostate cancer patients so that proper and rational treatment decisions can be made in a timely fashion. They also provide educational sessions for people interested in learning about propstate cancer.

General Member of the Public

Rating: 5

US TOO was the first organization i consulted when i was diagnosed with prostate cancer It was so scary for me but they were there for support and advice....the prostate pointers selection is unbelievably informative.....the members experience is more informative than the medical communities opinions....the doctors that do participate, dr strum and israel barken are the most informed doctors i've met and that includes the big medical center in which i'm a patient. i religiously check this site for new information and guidance from the people who have to live with this condition

Client Served

Rating: 5

I have been following patient conversation and the recommendations of medical doctors through this site for nearly a decade. This is an invaluable resource for men who face a very difficult disease. Beyond that, the site has helped me to be better informed and more conscious of how my diagnosis and treatment schedule should proceed. Thanks to all of the volunteers, medical doctors and patients who share their knowledge. I cannot say enough positive things here to express the feeling of gratitude I have for this resource.

Client Served

Rating: 5

I am the wife of a Prostate Cancer survivor. Through US TOO and its online support groups, I have received information about the disease which was vital in helping us to choose the appropriate form of treatment. In addition, the support that we have received during the course of my husband's diaagnosis, treatment and recovery has been invaluable. Although my husband's diagnosis occured over 14 years ago, I remain involved with an US TOO support group so that I can extend a helping hand to others. I have recommended US TOO groups to other men and their partners.

Harry H.

General Member of the Public

Rating: 4

Us Too is fabulous source of information about Prostrate Cancer. Us Too has help me and wife to be able to belong to a support group that provides reliable information. The information comes from Us Too. Us Too is extremely involved in the prevention and cure of Prostrate Cancer.

Volunteer

Rating: 5

I have been a member of Us TOO Intl., Inc., Prostate Cancer Education and Support Network as part of the Wichita, Kansas Chapter since 1996. With well over 300 chapters worldwide, this non-profit organization must count on funding from whatever source to provide support to this vast number of chapters. A visit to their website www.ustoo.org will gave the reviewer a better understanding of the involvement of this Prostate Cancer Support organization in so many necessary areas.