When I was diagnosed with advanced invasive bladder cancer in 2007, I was fortunate to find the American Bladder Cancer Society. Not only was the site loaded with current information on every aspect of the disease and treatments, but I was also welcomed by a group of others at various stages of their treatment path. I am a grateful survivor thanks in part to the guidance of this website.
I discovered this site and the ABLCS when I was first diagnosed with bladder cancer and it provided not only a wealth of information and links to resources but also much mutual support from others going through similar experiences.
Found out I had Bladder Cancer in 2006, laser surgery twice, BCG treatment, cancer returned in 2007 more laser surgery...just a whirlwind of emotions, pain, confusion and since it 'wasn't considered one of the more serious cancers' , there wasn't a lot of information. In Dec. 2007 had 12 hrs. of surgery with complete bladder removal, rebuilt my bladder using part of my small intestine "Neo-Bladder", removed my prostrate, removed several masses. Wish there had been a site like this for myself and my family to utilize because we basically had to rely on technical medical documents and other scattered sources. This site is very valuable to those who discover that they have Bladder Cancer. I volunteer at a local hospital with a cancer treatment center/oncology clinic/Women's Breast Heath Center. I wear my survivor's pin and talk freely about my cancer what I had done, and stress the need to do the research on sites like The American Bladder Cancer Society.
This site has made my life much easier dealing with cancer. It is often hard to talk to family due to the fact you know they hurt for you. Talking to people with the same issues and getting information recieved has been amazing.. I am a 28 year old female that has survied this with a two year old boy... Trust me!!! Great place... I would love more awareness on bladder cancer out there,
Amazing nonprofit!! Such a great resource for those of us diagnosed, for the families and friends and for the general public to get all the information they need!! If I could give more than a 5 star rating, I surely would!!!
If it is possible I would give the American Bladder Cancer Society a MILLION STARS!!!!!!!!!!!!!!!!!!! My husband, Steve, was diagnosed with Bladder Cancer in July, 2006, his was high grade w/CIS and if it wasn't for this site I would have totally lost it. The information provided was invaluable to us and the forum is beyond fantastic!!! Even though some of the members are going through the unthinkable in regard to Bladder Cancer either with themselves or with family members, they are beyond generous with their knowledge, support and a listening ear. We mainly lurk but I did post my husbands story on the forum in hopes of giving hope to someone who is where we were in terms of grasping what's has happened. Thank God Steve has been cancer free for 7 years now!
This site is very helpful thank you! I searched high and low for support and eventually found you. I have a lot of questions and fears. My Dad has stageIV bladder cancer and I need this forum to help me understand what he may be going through and what ways I can help. And I need advice on how to deal with my feelings. I'm glad I'm here. I think the forums and Sunday chat. Will help a lot.
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.
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.
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
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.
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!
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
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.
When I was diagnosised with bladder cancer in Feb. 2010 I didn't know where to turn. My local urologist had limited information as they mainly treat kidney stones and the like and offered no support. I was scared and needed answers that would affect my life and I needed them quick. I turned to the internet and came across American Bladder Cancer Society. I wrote on their site and immediatly I recieved responses from others with bladder cancer. They all gave me the best peice of information I could have expected and that was to seek a second opinion at a hospital that does more than 100 RC a year. They even went so far as to provide a list of doctors from all over the United States. I picked a doctor associated with UNC and have been to him for treatment and have had a one surgery by him too. I feel in very good hands and I owe it all to American Bladder Cancer Society. Without them I may not get the care and treatment that is required to live.
When first diagnosed with bladder cancer, I hunted on the internet for information. I found the American Bladder Cancer Society and it had information and a forum for patients and caregivers to ask/answer questions. It wasn't primarily a "social" site like some others I have seen. I learned a tremendous amount from the other users and now it's four years later, I lost my bladder to cancer but I now advise others on the site, have met one member and his wife to discuss what was going on and his upcoming surgery, and I've spoken to many other bladder cancer patients facing surgery. There are many people at various stages of cancer and it has been and continues to be a huge help to people.
I was diagnosed with bladder cancer in 2006 and again in 2007. I still don't understand how I got it, and like most people with cancer, I was terrified when I was told I had it. There isn't much information out there about bladder cancer. There aren't any commercial tie-ins, races or cute things to buy to "support" people with bladder cancer. So I was grateful to find the ABCS and connect with other people who've been in my shoes. In terms of really supporting people with cancer, the ABCS does a fantastic job and I appreciate their hard work on our behalf.
Since the change in doctors, I have realized that I should have gone to this new doctor in the first place. Having a serious disease like T1G3 bladder cancer, I should have been at a major teaching hospital. Also, I am now seeing personal experience of others who faced the same difficult choices I am now facing. I will likely face bladder removal and the American Bladder Cancer Society has put much information on the various options for me to explore. I am very thankful for this very valuable resource.