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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

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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

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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

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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

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 21, 2010

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June 21, 2010

I was diagnosed with bladder cancer this past March. After the initial shock began to wear off, I frantically began to surf the web looking for information. The more I looked, the more confused and frustrated I became. The problem was that when I found information, there was no means of asking questions (abstracts don't talk back). I did find a few sites that provided a means to post questions, but when I examined the "latest" post indicaters, I found that most were several months and even years old. Some were just vehicles for individuals to maintain a diary and no means to exchange information. Then I found the site for the American Bladder Cancer Society. I found that the site was up to date ("latest posts" were defined in hours and minutes rather than months or years), arranged in an easy to use manner, and easy to use. The greatest asset of the ABLCS site is the exchange of information. You are quickly surrounded by peope coping with the same disease and the lifestyle issues that it entails. The folks on the various threads are truly amazing. Questions are responded to quickly and always with words of hope and encouragement. For people like me that require more than "I heard somewhere that ...." the people that respond will back up what they are telling you with links to support the information. When it comes to questions of the "what should I be looking for" or "what should I be doing at this point", you can expect to get reliable information and. if needed, a push to help you to get moving in the right direction. For anyone that has been diagnosed with bladder cancer or the loved ones of someone diagnosed with bladder cancer, I highly recommend the American Bladder Cancer Society website and I suggest frequent review and participation in the conversations. I can attest that it has been a major factor in my personal ability to cope and find my direction at a very critical time in my life.

The Great!

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

American Bladder Cancer Society website and the people involved help me to understand the disease, learning the terminology,identify leading physicians and cancer centers, and assist in developing a plan to deal with the disease.

Ways to make it better...

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

The major change neede for American Bladder Cancer Society is funding to make this disease more visible to the general public. A greater awarness is needed.

More feedback...

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

the knowledge level of those involved and the obvious degree of caring and support shown by everyone.

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

only online, but through my communications with them, it is my belief that true commitment and concern flow throughout the organization.

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

potentially save untold numbers of lives and bring a very deadly killer out into the light of day from its current position of obscurity. Money makes things happen.

Ways to make it better...

I had been aware of the organization from the start.

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

increasing the level of awarness and turning that awarness into dollars for research, information, care and treatment.

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

if more people were aware of the frequency of bladder cancer and the deadliness of the disease, I have no doubt that funding to advance the fight for a cure would be much greater.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 20, 2010

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June 20, 2010

This is an amazing web site with many people sharing information. Wonderful resource being able to steer and share this site with many that my Doctor has treated. Lots of concern and fear have been mitigated by being able to use ABLC!

The Great!

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

I discovered this by accident being a BLC survivor. It has been a lifesaver!

Ways to make it better...

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

None

More feedback...

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

The quality of the people.

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

Extremely caring and helpful.

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

Save more lives.

Ways to make it better...

No complaints.

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

Lack of overall funding for BLC.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 20, 2010

more

June 20, 2010

When I found out I had Bladder Cancer last year (2009) I found this site while doing research. It's was a tremendous help in educating me on what to expect and later, after my surgery, that what I was experiencing was quite normal. Over the past year I have followed the blogs and discussions. They go out of their way to guide you in the right direction.

The Great!

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

They have my personal well being after surgery.

More feedback...

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

The people of this organization are also survivors of Bladder Cancer. Through their experience and research they are helping others get through a very difficult and terrifying time in their lives. They are Angels on Earth.

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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