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American Bladder Cancer Society Inc

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Nonprofit Overview

Causes: Cancer, Health

Mission: The American Bladder Cancer Society's function is to raise awareness of bladder cancer among the general public and the medical community, to advocate through all means available the advance of research into a cure, treatment, early diagnosis and quality of life issues of survivors, to support bladder cancer survivors by providing community as well as by encouraging the concept of informed medical consumerism.

Geographic areas served: United States

Programs: Raise awareness of bladder cancer among the general public and the medical community. The organization's website/social networking site is available "24/7" as a source of support for survivors, caregivers, and anyone interested in learning more about this often overlooked disease. During 2014, over 110,000 visits were made to our website/social networking site; a daily average of over 330. Our forum allows users to post on a variety of topics and others can provide responses. The forum contains over 43,600 user posts from a community of over 5,000 users.

Community Stories

53 Stories from Volunteers, Donors & Supporters

Heidi23

Volunteer

Rating: 5

In Nov. of last year I was told I had a dark mass in my bladder after urinateing blood a couple of times. Then on the week before Christmas I had a surgery to have the mass removed. A few days before Christmas my Urologist called me at 7:30 in the evening to tell me that the mass was cancerous but he was certain they removed all of the tumor. It was Christmas, and I had no one to answer any of the questions I had about Bladder Cancer. I found The American Bladder Cancer Society and went to the chat room to see if anyone could help me. As soon as I said hello one of the volunteers said Welcome, and asked If they could help me in any way. After just a few questions I felt like I was with a close friend. After being so scared they calmed my fears. The relief was so great that it made me cry. That is something that a 48 year old Northern Minnesotan just doesn't do. Now after learning so much from them and my doctors, I am trying to help others get through that scary time and hopefully calm their fears. This is the first time I have ever volunteered to help anyone else. But after everything they have done for me I felt this was something I had to do.

1

Volunteer

Rating: 5

My name is Abby and I am 73 yrs old. March 2009 I was diagnosed with bladder cancer. I was devistated. I was told my best chance would be to have my bladder removed. That was very hard for me to come to grips with. So I got on the internet and found help. A wonderful lady contacted me and gave me some very good advise and put me in contact with a bladder cancer survivor near where I live. My new friend is my "angel warrior". She helped me through some very tough times and has given me advise that is pricless. Having gone through this she knew the questions I should have been asking but had not even thought of. I spent a year going through all the normal treatments, Chemo, etc. Finally in March of 2010 I had my bladder removed. I can't tell you how afraid I was.I chose the Ileal conduit because My husband passed away in April 2005 and being alone I thought this was best/safest way to go. Now that the surgery is behind me and I am on the road to recovery I am glad I did it. It has been just about 5 months since my surgery and I volunteer one day a week at my local senior center, one day a week I babysit my great-granddaughter, one day a week I bowl with the seniors. When I was told I had cancer I thought my life was over but that is not the case. Life is different but not over. I can never thank my angel enough for the help she has given me and she still supports me today. If I can do this at my age then I have hope that someone out the reading this will have a little faith that they can do it too. God bless!

1

General Member of the Public

Rating: 5

In May of 2010, my husband and I were given the shock of our lives. We were told my husband had Bladder Cancer. Not much of a warning to prepare for such a blow in life. Some blood in the urine and then pow, hit in the face with a cancer diagnosis. Despite us both being health care professionals, the diagnosis hit us both extremely hard. We knew we were going to have to learn a lot in a relatively short period of time, if we were going to help increase his odds of survival. Aside the quick bits and pieces of information we were given during a doctors appointment, where else could we go? We had some of the basics down, but we wanted to talk to real people who faced the same situations. We needed updated abstracts and data about Bladder Cancer. We were still in shock. We desperately needed guidance. Shortly after taking to intense research on the Internet, I was fortunate to find a link to the American Bladder Cancer Forum. ABLCS. We no sooner logged on to the ABLCS site when we were greeted by many wonderful and knowledgeable people who were willing to help us. The compassion and knowledge from the members at ABLCS was overwhelming in a positive way. They all knew the words to say; first encouraging us to take a deep breath. Oh yes, something as simple as breathing, a situation people often forget to do when given a serious diagnosis such as cancer. One at a time, the ABLCS members began delivering us the answers about what steps we needed to take in an effort to help save my husbands life. One of ABLCS long standing members named Patricia, was like a walking encyclopedia with regard to her knowledge about Bladder Cancer. She was our Guardian Angel. She not only helped us through the steps, but knew the top docs and hospitals in the country who would be best to help us. Never once did she make us feel like we were taking up her time. When one faces such a diagnosis as cancer, it feels like you are caught in the middle of a tornado and you have no idea where it will toss you when it is done spinning. I am here to tell you that ABLCS is there to catch you when you are tossed to the ground. The organization provides, at no charge to its members, updated bladder cancer information and articles, facts about bladder cancer, and on going daily testimony from survivors and caregivers. The information is there for members to retrieve 24 hours a day, 7 days per week. On Sunday evenings there is a LIVE chat line for members. We would not have known what to have done with my husbands Bladder Cancer diagnosis if it were not for ABLCS. It is a non profit organization that empowers each of the members with education. ABLCS is constantly pioneering the way to locate updated information about treatments and cures for Bladder Cancer. The goal, to educate those of us diagnosed with an overpowering disease. No member is ever denied help from ABLCS. It is an organization dedicated to serving Bladder Cancer patients from everywhere in the world. For that, we are grateful.

1

Client Served

Rating: 5

In 2006, when I was diagnosed with bladder cancer, not many people had ever heard of a female in her 30's having bladder cancer. That included my doctors at MD Anderson! While researching bladder cancer on the internet, I came across ABLCS. I was immediately welcomed to the group and many came forward to both help me understand what I was dealing with and provide unwavering support and encouragement. To this day, when I have questions, I return to my friends at ABLCS for answers. I have even sent my doctors to the site for additional information about treating a patient with a neobladder. Without a doubt, I would have been completely lost and alone during my cancer treatment had I not been fortunate enough to stumble upon this wonderful resource.

1

Client Served

Rating: 5

I found this web site perhaps two years ago and log on at least weekly. Not only do the members here support each other, they contribute a world of information. If it wasn't for this organization, many of us (including myself) would remain ignorant of our disease. This site has enable me to make educated decisions when it came to the treatments and diagnostic tests. By coming here and supporting others, I have also gained unmeasurable emotional support.

9

Volunteer

Rating: 5

The American Bladder Cancer Forum has been very informative and helpful in all of the processes of treatment and maintenance.

1

Volunteer

Rating: 5

Having been diagnosed in 2002 with invasive T2a bladder cancer after a very scary bout of gross hematuria i dutifully followed my local internists advise and went to my local urologist. My first transurethral resection was done locally before my brain cells had a chance to process "Bladder Cancer"..huh..? Who has ever heard of bladder cancer. My first process was to find the top cancer and urological centers in the US and go down their list of uro/surgeons who specialized in bladder cancer..not prostate cancer...or kidney stones......Bladder cancer. I found it a very limited field. By sheer dumb luck i was able to get in with one of the top surgeons at one of the top facilities in the country who did a second TURB on me. This has now become the norm as there is over a 50% chance that initial pathology is understaged. This started me on a journey of interviewing specialists in the field who dealt with women in particular. I have continued my research for the past 8 l/2 yrs and have found a home at ABLCS as it is a site based on informed data and not a Facebook site of bladder cancer. All answers are backed up with informative data. In addition our members are so very helpful to the newbie who we can all relate to as we've all been there. Its just a wonderful site, always improving, and links to all NCI centers and their urology departments. It made a difference for me and i hope i can pass that on to others.

5

General Member of the Public

Rating: 5

ABLCS I came across this site by chance when I was initially diagnosed with BC & what a help it has been to me & many many others. When you are feeling at your most vunerable & totally confused as to which questions to ask, which way to go, this site has wonderful kind knowlegable people who have experinced the same & much more. It was a godsend to me & I continue to keep in touch for information & support. Thank you ABLCS !!

5

Client Served

Rating: 5

I had bladder cancer for 5 years and came to a point where nothing was working and the cancer was advancing. I was extremely upset and confused about having a total Cystectomy. I found this web site and was able to confer with others going through the same thing. The comfort of talking with others and the information I got from this site was so helpful. My recovery and anxiety over this procedure was greatly reduced due to the selfless sharing, caring and information I received here. God Bless ABLCS Rudy Zitti

7

Board Member

Rating: 5

About 5 years ago my best friend was diagnosed with Bladder Cancer. I was unfamiliar with Bladder Cancer and when I went to search for information there was little available. The research she did was often too little and very frightening. There was no one to talk to except her doctor who was of little help when she asked for more information and options for treatment or heaven help her even asking for a second opinion for treatment options. She selecting another doctor for treatment and as she went through the treatments she started looking for a way to help other newly diagnosed Bladder Cancer patients as well as survivors and their caregivers. She did not want other people to have to go through Bladder Cancer alone. I have watched this organization grow and see all the help and support it gives to people at a very difficult time in their lives. It is available 24 hours a day and I see users on the site at all hours, sometimes searching for information and sometimes asking questions and yes, getting answers at all hours. The site can help a person find current information on Bladder Cancer and treatments available, find a doctor in their area, help with insurance coverage problems and help with personal questions about life during and after treatment. The site will not tell a person what treatment is best for them as only their doctor can know treatment is best for their particular diagnosis. No one knows better what a Bladder Cancer patient is going through than another Bladder Cancer survivor. Every cancer is unique and comes with its own treatment effects, after treatment effects, as well as long term life issues and fears. THIS ORGANIZATION IS TRULY A LIFE LINE FOR SO MANY BLADDER CANCER SURVIVORS.

7

General Member of the Public

Rating: 5

I found out I had bladder cancer late in 2008. I had the tumor removed and started my BCG treatments. After my 4th treatment, I had a severe reaction and it affected my joints and eyes. I tried to talk with the doctors but they were unaware of what to do. I came across The American Bladder Cancer Society website and can't begin to tell you the help I received. Many expressed that they too have had these kind of symptons and they all helped me everyday until I was on the road to recovery. I don't know what I would do without their help - I go to the website almost daily. I constantly find out new information on bladder cancer, plus learn the experience of all of the people who are going through it. This site has been my constant, and when you are facing cancer that is very important. Thank you for your time. Bobbi Berg

7

Client Served

Rating: 5

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.

6

General Member of the Public

Rating: 5

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.

10

Client Served

Rating: 5

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!

Comments ( 1 )

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cynthia17 06/24/2010

Thank you so much for the very kind words. I am the Cynthia mentioned above and I just wanted to comment that the ABLCS exists because of the work of many dedicated people not just myself. The forum posts are done by survivors and the people who care about them not by volunteers of the ABLCS. The most common advice our forum users give to each other is to seek a second opinion following a new diagnose. Our forum community networks, shares support, experiences and vent; however we do not allow posts to contain the name of a doctor if there is a negative comment. Thank you again

10

General Member of the Public

Rating: 5

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.

10

General Member of the Public

Rating: 5

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.

11

Client Served

Rating: 5

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.

8

General Member of the Public

Rating: 5

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

9

General Member of the Public

Rating: 5

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.

5

General Member of the Public

Rating: 5

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