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53 Reviews
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July 10, 2012

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July 10, 2012

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.

The Great!

I've personally experienced the results of this organization in...

My own understanding of bladder cancer and how I not only can cope with it, but that I too can help others along the way while learning how to live with my own cancer.

Ways to make it better...

If I had to make changes to this organization, I would...

Make it more visible to those with bladder cancer.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

I showed me not to ever give up, and that I could help others while I was learning how to deal with my own cancer.

How did this volunteer experience make you feel?

Rewarded. When someone tells you that you have calmed them or gave them the strength to fight cancer. You can't help but feel good about that.

August 13, 2010
1 person found this review helpful

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August 13, 2010
1 person found this review helpful

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!

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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

August 3, 2010

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August 3, 2010

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.

The Great!

I've personally experienced the results of this organization in...

n/a

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

Meeting people whi have the same medical situations as ours.

The kinds of staff and volunteers that I met were...

Professional, educated and helpful.

If this organization had 10 million bucks, it could...

Continue to work for the betterment of society with regard to education and cures for Bladder Cancer.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

August 3, 2010
1 person found this review helpful

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August 3, 2010
1 person found this review helpful

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.

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The Great!

I've personally experienced the results of this organization in...

I believe I covered this topic above...

Ways to make it better...

If I had to make changes to this organization, I would...

Continue to work on growing the awareness of the organization, which is currently underway.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

ABLCS provided hope, companionship and answers from others who had or were experiencing the same cancer diagnosis and treatments.

The kinds of staff and volunteers that I met were...

Incredibly supportive and willing to share absolutely anything! The urinary and reproductive systems are not always the easiest to discuss with total strangers.

If this organization had 10 million bucks, it could...

1) Help get the message out that Bladder Cancer is the 5th most common cancer. If caught and treated early, the chances of survival are very high! 2)Help eliminate the stigma associated with cancer of the "private parts"! 3) Help more people!

Ways to make it better...

I didn't have cancer? Seriously, I can't think of anything!

In my opinion, the biggest challenges facing this organization are...

1) Funding. It takes funds to launch a campaign to teach people about bladder cancer. 2) The stigma associated with this disease

One thing I'd also say is that...

This organization has made incredible strides in the amount of time they have been in existence.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

July 22, 2010
1 person found this review helpful

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July 22, 2010
1 person found this review helpful

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 Great!

I've personally experienced the results of this organization in...

As mentioned above, it has become my one source of information and support for my disease.

Ways to make it better...

If I had to make changes to this organization, I would...

Get Urologist office to provide information to their patients about this organization and its website

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

the education and support I have received

The kinds of staff and volunteers that I met were...

very knowledgeable and supportive

If this organization had 10 million bucks, it could...

contribute more the the research of the disease

Ways to make it better...

I had found the organization earlier

In my opinion, the biggest challenges facing this organization are...

growing so more individuals know of the great work they do.

One thing I'd also say is that...

I can't say enough positive things about this organization

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

July 9, 2010

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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

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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

July 6, 2010

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July 6, 2010

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 !!

The Great!

I've personally experienced the results of this organization in...

continually needing the information & support provided

More feedback...

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

July 2, 2010

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July 2, 2010

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

The Great!

I've personally experienced the results of this organization in...

Having to undergo a Radical Cystectomy

More feedback...

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 29, 2010

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June 29, 2010

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.

The Great!

I've personally experienced the results of this organization in...

I ahve experienced the results of this organization since its beginning and every day since.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

Hearing from people about how this organization has helped them or a loved one.

The kinds of staff and volunteers that I met were...

The board members are very committed to this organization. Many are bladder cancer survivors and are scattered through the United States and give up personal time to volunteer.

If this organization had 10 million bucks, it could...

Help educate people about the symptons of bladder cancer so it can be detected early making the survival rate soar.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

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