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.
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!
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.
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.
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.
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.