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June 26, 2010

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June 26, 2010

I was diagnosed with bladder cancer in Feb 2010. This organization has been an invaluable help in letting me know I’m not alone in my struggle and that, yes, there is an end in sight—I will feel “normal” one day.

The Great!

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

Just before my surgery to remove my bladder, I contacted the ABLCS. Since then, the other contributors (fellow cancer patients) to the forum section of the website have been a tremendous help, encouraging, and letting me know what is normal.

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 26, 2010

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June 26, 2010

This is a great group of people. They've really helped me and others. I've asked questions and had very helpful answers and I've also been to their website forum and just reading the posts and the advice have given me hope for my father. They have helped eliviate fear of what was the unknown and helped us in asking the right questions of his doctor. They have been an invaluable source of support and information for us. ABCS has probably saved many lives in encouraging second opinions and directing people to qualified cancer centers/doctors in areas all over the US.

The Great!

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

peace of mind and knowledge from them personally and the stories of people they have helped and/or encouraged. I have learned so much from them.

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What I've enjoyed the most about my experience with this nonprofit is...

Talking with everyone, getting information. It's nice to be able to talk with a group of people who will give you answers and complete honesty.

The kinds of staff and volunteers that I met were...

very knowledgeble and helpful

If this organization had 10 million bucks, it could...

Help so many people out there feeling lost and helpless.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 23, 2010

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June 23, 2010

At the age of 53. Perfectly healthy in every way and ready to charge into "the best years of life!" I was diagnosed with cancer during a routine Physical. I was devastated, to say the least. I knew nothing about bladder cancer, had not been a smoker, and had NO history of cancer in the family. The Dr. wanted to move quickly and I had 2 robotic surgeries within 6 weeks of diagnosis. I soon found out I was going to have Major Surgery in 6 days after the last minor one. My wife and I were thrown for the proverbial loop! To say the least! I began a search of Cancer web sites and narrowed it down to the ABCS site. I soon found out that many people like me had suffered from this little known but major cancer. I asked questions and found many survivors who offered advice and consolation. They allowed my wife and I to face the future with something less than dread. Since I have recovered form my surgeries, I felt I needed to return some of that help. I have become an advocate for positive thinking and never giving up when faced with this disease. I cannot help but think that every day another victim of this disease stumbles on this site, looking for help. Cynthia is a one woman bladder cancer encyclopedia. She needs all the support we can muster for her. Don't believe it? Log on and read a few stories. She and this site have SAVED Lives!

Photos

The Great!

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

Once you have cancer.... You are changed. You either deal with the reality or let it eat you up. This group of selfless individuals give freely of their time and knowledge. I am able to deal with this disease without it tearing me up because of them.

Ways to make it better...

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

Shout its praises from the mountaintop! Bladder cancer is still not a "pretty" cancer. Therefore it doesn't get much press. But this little group is THE place for answers and Hope. The American Bladder Cancer Society needs to be on every Dr. list.

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What I've enjoyed the most about my experience with this nonprofit is...

Their main focus is dealing with personal issues and real solutions. They do not mince words. They push the patient to get the best care and they are unafraid to tell a patient that they need to look elsewhere for a better Dr.

The kinds of staff and volunteers that I met were...

I have never personally met anyone. I know how they feel and am constantly aware of their knowledge and their willingness to share it.

If this organization had 10 million bucks, it could...

Save More lives! Many people die from bladder cancer because they either, don't get care immediately, or they don't know what to do. If this site was publicised more, they would live longer and better lives

Ways to make it better...

I knew about it earlier. My wife went through hell because she just didn't know enough about what was going on.

In my opinion, the biggest challenges facing this organization are...

This is not a pretty cancer.... Hence it has no movie stars doing fundraisers. It is also a "Survivable" cancer if found early enough. The Challenge is to get the word out!

One thing I'd also say is that...

This is truly a success story of what one woman, on a mission, and really pissed off, can do. Cynthia saw a void in this cancer's information arena, and filled it singlehandedly

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 23, 2010

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June 23, 2010

I was officially diagnosed with bladder cancer in January 2010 although the first Dr. suspected it in Oct of 2009. I found this site at the first mention of the possibility of bladder cancer. It has many wonderful helpful people who as others have said are more than willing to give advice based on their own personal experience. No one ever hears about bladder cancer until it effects them or a member of their family. I consider the other members of this site to be family as well. I just wish there was much more research done on bladder cancer. At least on an even playing field as many of forms of cancer when it comes to funding for research and support.

The Great!

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

Learning what questions to ask of my Dr. and understanding of the different treatment options as well as comfort for the strength of so many members.

Ways to make it better...

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

Not change a thing.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

The support.

Ways to make it better...

don't know how my experience could have been better.

In my opinion, the biggest challenges facing this organization are...

Lack of funds.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 23, 2010

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June 23, 2010

My husband was diagnosed with Ta, Grade 3 w/CIS in July, 2005. We have learned alot about bladder cancer from the American Bladder Cancer Society and its members who are extremely knowledgeable and helpful.

The Great!

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

knowledge about bladder cancer.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

the knowledge the website and the people who are a part of it have.

If this organization had 10 million bucks, it could...

be better able to get the word out about bladder cancer. Too many times it is not considered as a DX until later on. Dr's need to know that it should be considered when people come to them with blood in their urine.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 23, 2010

more

June 23, 2010

I was diagnosed with bladder cancer in 2005. I was devastated. No one knew of bladder cancer. There is still so much unknown and so much misinformation out there. I ultimately had a cystectomy and chemotherapy. I could not have gone through this experience without this group. It gave me hope. They calmed the terrors I felt. I did not feel alone. It made me realize that my life may have changed but its manageable. Its a wonderful source of information. ABLCS is making a difference.

The Great!

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

During my own experience with bladder cancer.

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 23, 2010

more

June 23, 2010

ABCS is a wonderful place. I went there when I found out i had bladder cancer. Yes, bladder cancer. I know it's not prestegous as having breast cancer, but it still is cancer, and can kill you. It is a safe harbor for those with BC can come to, get questions answered, and get support for this aweful disease. Like I said, it is not breat cancer, it is the forgoten cancer. More awareness needs to be brought to this cancer

The Great!

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

I have beat cancer, and now I help others hoping they will do the same

Ways to make it better...

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

do nothing

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

it saved my life...........enough said?

The kinds of staff and volunteers that I met were...

kind

If this organization had 10 million bucks, it could...

save more lifes

Ways to make it better...

I wouldn't have got cancer

In my opinion, the biggest challenges facing this organization are...

funds

One thing I'd also say is that...

God Bless ABCS

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 23, 2010

more

June 23, 2010

This web site has been great. From the expertise provided by many members to the comfort and support from those dealing with bladder cancer. I participate as much as I can in relating my experiences with the treatment received and history of my case. This was the first site I came upon when diagnosed. I don't know what I would do without it.

The Great!

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

what treatement I would be received, encouragment, advise and compassion. I try to do same for new memebers recently diagonsed

Ways to make it better...

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

I don't think I would make any. I wish I could help them out financially as the information provided is truly unbelievable.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

The wealth of information, compassion and experience of the members.

The kinds of staff and volunteers that I met were...

fantastic, responsive and full of suggestions.

If this organization had 10 million bucks, it could...

work with research, and hospitals to find a cure.

Ways to make it better...

There was no one suffering from this disease. It is a great site.

In my opinion, the biggest challenges facing this organization are...

Lack of funding. Bladder cancer is not funded adequately and is way down on the list.

One thing I'd also say is that...

I hope this organization never goes away. You always have someone to turn to.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 23, 2010

more

June 23, 2010

I would be lost in world of decisions to be made and no direction with out ABCS. The website has given me hope and the education that I can beat BC. The tools and support I have received and still receiving has changed my outlook on my condition. I am checking the website through out the day for information and encouragement. I would be lost with ABCS

The Great!

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

I have been using the website for six months and can not imagine my world without the help and support I receive for the people that post

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How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 22, 2010

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June 22, 2010

When I was 1st diagnosed with bladder cancer, I had so many questions, but no one with answers except the Urolgist who had no time for my questions. When I joined ABLCS I found many peers who had gone through what I was going through. All my questions were answered. I began to feel better and sleep more without worrying so much. My stress from getting bladder cancer disappeared, knowing I had so many people on the site to help me.

The Great!

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

making my life with bladder cancer so much easier.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

How kind the people are to share their experiences with bladder cancer

The kinds of staff and volunteers that I met were...

kind generous with their time. Devoted to patient support and awareness.

If this organization had 10 million bucks, it could...

save so many bladders and lifes.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

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