American Bladder Cancer Society Inc
Invite reviews
Invite friends and colleagues to share their experiences with this nonprofit
August 13, 2010
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!
Photos
The Great!
I've personally experienced the results of this organization in...
Yes
More feedback...
How frequently have you been involved with the organization?
One time
When was your last experience with this nonprofit?
2010
July 9, 2010
The American Bladder Cancer Forum has been very informative and helpful in all of the processes of treatment and maintenance.
The Great!
I've personally experienced the results of this organization in...
seeking second opinions from doctors. Found useful advice about protocols as well.
More feedback...
How frequently have you been involved with the organization?
About every six months
When was your last experience with this nonprofit?
2010
July 9, 2010
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.
The Great!
I've personally experienced the results of this organization in...
see so many uninformed newcomers seek out the right advise and have a successful outcome.
Ways to make it better...
If I had to make changes to this organization, I would...
figure out a way to raise monies so that noone would ever have to die from this very elite disease.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
seeing the success stories
The kinds of staff and volunteers that I met were...
outstanding
If this organization had 10 million bucks, it could...
Go for the CURE
Ways to make it better...
i didn't have so many tears for the ones that fought and lost.
In my opinion, the biggest challenges facing this organization are...
recognition and monies
One thing I'd also say is that...
thank you for a site with such integrity and honest sharing members.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
June 22, 2010
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.
The Great!
I've personally experienced the results of this organization in...
making my life with bladder cancer so much easier.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
How kind the people are to share their experiences with bladder cancer
The kinds of staff and volunteers that I met were...
kind generous with their time. Devoted to patient support and awareness.
If this organization had 10 million bucks, it could...
save so many bladders and lifes.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
June 20, 2010
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.
The Great!
I've personally experienced the results of this organization in...
so many ways......as stated above - critical decisions and emotionally.
More feedback...
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
June 19, 2010
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.
The Great!
I've personally experienced the results of this organization in...
Please see my detailed, and perhaps incoherent, discussion above.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
The ready friendship with others in "the same boat" that I found here
The kinds of staff and volunteers that I met were...
All are absolutely wonderful. AND they are all volunteers..except for our tech guy who was hired to set up and maintain our web site.
If this organization had 10 million bucks, it could...
I don't think we need 10 million bucks. Just a few thousand would enable us to enhance our efforts and expand our outreach tremendously.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
Previous |
Next
Filter by reviewer role:
Support This Nonprofit
Help this nonprofit get more reviews
5 tips for getting reviews