“You’re the living embodiment of John Wesley's words:
‘Do all the good you can, by all the means you can, in all the ways you can…’
You certainly have done good for me, and I am so thankful.”
Thank you, for your support this past year with my Bladder Cancer battle, you have helped me to be strong on this long tedious road!
If receiving a Bladder Cancer diagnosis, people jump to the internet only to find random, confusing, and frightening information, but no individual help. The "been there/done that" caregivers and survivors at ABLCS welcome you into a friendly environment as a person, providing excellent information, input, and support. Lurkers to the forum often spot others with similar situations, and sensible questions. Many join in to participate. Each one contributes a valuable piece of information that could help others better understand and deal with Bladder Cancer. It's an unfortunate, long term commitment when one joins the "B-C Club". Finding the ABLCS forum provided the communication not found elsewhere. Thanks.
My hospital and my Doctor were not helpful in aiding me to adjust to the bag. Dealing with the issues about the bag were driving me nuts. Several others here were also out of surgery and were Huge help with my problems. Realizing the stress that can come from surgery, I now try to be informative for new folks. It's also important to point out to others that cancer IS NOT terminal.
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.
This site has kept me from loosing my mind through my seven or eight years of going through surgeries and checkups. they would talk to me and support me in hard times and celibrate the good times. I don't know what I would have done without my friends at ABLCS.
This is the only website that has made me feel so loved and supported, instead of just a place to vent and get info. Best forums and blogs ever! Sail on, ABCLS!
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.
This organization was founded in 2008 to provide help, hope, and support to members of the bladder cancer community. Each year, more and more people access our website/social networking site to receive information and support for this often overlooked and underserved disease.
The ABLCS website is wonderful! The information shared amongst caregivers and bladder cancer survivors in the forum is helpful and reassuring to those of us who visit the site. My husband, Doug, was diagnosed in May, 2001 and has had 5 re-occurrences. His cancer has remained non-invasive and he has been cancer-free for almost 5 years. Knowing the options that are available should his cancer progress is helpful. Survivors on this site are most willing to share their experiences and encourage others. Having this site available is a true gift.
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 is such a wonderful place to learn all about this cancer, my husband was diagnosed in Dec. 2012, had a radical cystectomy May 2013 , We had no knowledge of this cancer except that it was fast acting in my husband, with this site and information and stories from others I felt much more informed, our regular MD had no information on this as he had never had a patient with this type of cancer before. Our new Doctor at UofC informed us of this site, and what a help it has been.
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!
The Society has been a wonderful to me. I lost my dad to stage 2 bladder cancer. He went from diagnosed to being gone in about 7 weeks. I was devastated. You hear so much about breast cancer all over the place, it was hard to find information or support about bladder cancer. I didn't feel so alone, here were people who understood, who could give me facts and information. I strongly support them and all they are doing to inform more people
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.
After being diagnosed in January 2010 at age 55 with a "rare" form of bladder cancer, a primary bladder adenocarcinoma, I was referred to Vanderbilt where they did a bladder-sparing partial cystectomy. I was fortunate that I met the very strict criteria for that surgical option. Even though I had very supportive family and friends, I had never felt so alone and isolated as those first several months. Until that path report, I had never been to a urologist, never heard any of those "cysto" words like cystoscope and cystectomy. I didn't know anyone with bladder cancer, and kept reading dismal statistics for my type of cancer. I finally found ABLCS eight months later and I feel like it saved my emotional and mental life. Being among "people like me" took away the dark cloud that had hovered over me all that time. I really can't express my appreciation for the acceptance, encouragement, and empathy I received from members of the ABLCS forum. I now volunteer my time as a forum moderator to be there for others as they hear those same words from their own doctors... "you have bladder cancer." We hope by educating as many people as we can reach, bladder cancer can be diagnosed earlier when treatment has the greatest chance of success against this very determined enemy which has the highest recurrence rate of any other cancer. All I can say is, "Thank you, ABLCS for being there for me, and for everyone affected by this devastating disease."
At 53 years of age, and having never had a health issue, I was diagnosed with bladder cancer. Even though I was correctly diagnosed and Professionally treated, I was constantly wondering if I was supposed to be alone during this process. After finding the ABCS website, I was amazed at the amount of information and support they made available to everyone. I was so impressed I became a regular member of the site and wanted to help others get through their illness. This site is a godsend to those who are afraid and in need of information and a shoulder. The people who created and support this site are to be applauded and rewarded for their efforts
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.
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!
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.
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.
The American Bladder Cancer Forum has been very informative and helpful in all of the processes of treatment and maintenance.
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.
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 !!
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
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.
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
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.
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.
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 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.
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.
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.
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
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.
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
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.
Any cancer is a scary thing. Bladder cancer is particularly scary because of its location and the lack of information available. The American Bladder Cancer Society was created to provide support for those in need of information to ease their worry and to give them the tools to take an active part in their treatment. Knowledge is power. This ABLCS gives the opportunity for knowledge and mutual emotional support through its web site. The Officers and Board get no financial gain from their participation and infact financially support the orgainzation. This is a site that truly is their for those who use it and is worthy of support.
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.
I am a 15 yr. survivor of bladder cancer. I was treated for UTI's for a year before being referred to a urologist. By that time it was invasive, and a radical cystectomy was performed. There was little information available online or elsewhere. The creation of the American Bladder Cancer Society has been a godsend for many patients and caregivers, because now there is a place where they can fin information, interact and get support from fellow survivors. This nonprofit organization has come about because of the efforts of survivors without the support of any celebreties, outside financial support or other support. Even when the medical care is excellent, there are still emotional issues that bladder cancer patients experience that are not addressed. There are no local bladder cancer support groups. There are no marathons or large fundraising events to support this type of cancer. However there is a place for patients, caregivers and family, the website: www.bladdercancersupport.org, bladder cancer patients can share stories and information, gather information and keep up on research. Female bladder cancer patients are just like those who have had breast cancer; self-concept is attacked. The patient grieves for her loss and searches for identity as a female. . Too many people aren’t aware of how much of a women’s issue bladder cancer can be. Unlike those with bladder cancer, the awareness about this cancer is very limited even though it is ranked as the 5th. most prevalent for men and women, and as prevalent as cervical cancer in women. The efforts of the ABLS and the website is vital to providing information, support, and helping to stamp out this cancer. It is a worthy endeavor and deserves more support than it gets.
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!
My brother was dx'd with Bladder Cancer 2003. While searching for information (since we had never heard of bladder cancer) I came across the website. I immediately sent the link to my brother, and did some reading myself. Little did I know that I would need this website myself in 2006. Since my brother had history with bladder cancer and was treated for an infection instead of a cysto (for 12 months), at the first sign of blood, I went to the ER. (it was Sat.) Thank heavens the attending Dr. did a scan and spotted the tumors. Monday I went to a Urologist, confirmed what the ER found on Tues. had a TURB. Nobody I have spoken to - neighbors, friends etc. even have heard of Bladder Cancer. Because mine was found early I was treated with BCG (used the last 50 yrs.) and still have my bladder. My brother had to have a Neo bladder, however he is doing well. At this time, due to very little money given for research of bladder cancer, doctors still insist it does not run in families. Plus the fact all the people that don't even know they have the desease and are walking around with it instead of getting treated and perhaps saving their bladder and life. This website in all volunteer, and the education and emotional help I have received from American Bladder Cancer Society, Inc had helped me find the right doctors and heal emotionally, and actually is still helping me on a day to day basis.
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 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.
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 am a 10 year survivor of stage IV bladder cancer. I believe that those who survive have a duty and responsibility to those who come after. I have joined with the others on the Board to increase the information about this cancer and its special risks for women, making such knowledge about bladder cancer clearly available to others, and also advocating for research funding. I also believe that another of our roles on the Board and the website is to provide hope to those newly diagnosed-- to show that with prompt, appropriate and informed treatment, this aggressive cancer is survivable.
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.
I came to this site, totally confused and upset because I had just been diagnosed with bladder cancer. It is supposedly a disease of smoking males, and I am a non-smoking female! I was absolultely panicked. The web site of the American Bladder Cancer Society has a wealth of vetted information available. However, the most valuable, to me, is the almost immediate help available from volunteers/members when you have issues or questions. Both via an email link and, especially the Forum, other members who have "been there -- done that" are ready to share their experiences and (non-medical) advice. I am now 2.5 years from diagnosis and am a volunteer myself. I participate on the Forum and have spoken to numerous people on the telephone. They are confused and very worried. I, and other members of the ABCS, are able to help them calm down and assess their situation, and realize that there IS hope and excellent treatment options are available. One of the most valuable services we provide is a comprehensive list of cancer centers and hospitals which specialize in the treatment of bladder cancer. I don't know what I would have done after my initial diagnosis without this wonderful group of caring volunteers.