In 2001 I was diagnosed with bladder cancer. There was not much information out there. When it recurred in 2005 I got online and started looking again. It was then I discovered BCAN who had a wealth of information. By 2010 it had come back three more times and cystectomy was recommended with 3 types of revisions offered. I went back to BCAN and found a mentor who was very helpful in making a decision. Today I do the same mentoring for BCAN as I know firsthand how important they are to a bladder cancer patient.
When it comes to Bladder Cancer there is no better resource than BCAN for people who are newly diagnosed to receive information!
After the initial shock of finding out I had bladder cancer, I had many questions. BCAN is the Wikipedia of bladder cancer. It had all the explanations and answers I needed.
Helped educate me at a very scary time and inspired my to seek help at UCSF and leave my local hospital for treatment. Best decision I every made and now I have been NED after being T-2 high grade and I still have my bladder!
I have participated in the BCAN Chicago walk for 2 years now and both events have been great! Fully support their mission and I am happy to assist where I can.
As a newly diagnosed patient with bladder cancer, BCAN provided readily accessible and comprehensible resources I needed to understand what my diagnosis meant. BCAN helped to guide appropriate treatment decisions.
Currently, as a patient advocate, BCAN offers me and other patients opportunities
to learn, to share experience, and also to interact with providers and researchers who are working on more effective curative and palliative treatment. BCAN authentically involves and supports patients through education, support, research. BCAN continually interacts with patients to determine their needs and improve care based on patient and caregiver input. BCAN is an exceptional non-profit and advocacy organization.
This, in my opinion, is absolutely the best source of advice and information for a bladder cancer patient. In a lot of ways I think I would consult this site even before my Doctor. You get the experience of hundreds if not thousands of people who are going through the same problems you are experiencing. I would even consider certain members as a legitimate second opinion for any protocol recommended by my own oncologist. I consider myself to be very fortunate to have found this site.
BCAN's focus on research and medicine is why I continue to support them. When my mom was ill, BCAN put my parents in touch with a consultant who was able to help them find studies looking for volunteers and other research trials. This was concrete, practical, patient-centered care. I hope BCAN grows even more and provides even more funding and support for valuable research!
At the age of 30, I was diagnosed with non-invasive bladder cancer. Prior to being diagnosed, I had never heard of this type of cancer. I never had any of the signs and symptoms associated with bladder cancer; however, I had a lot of UTI's. I begin to search online and came across the Bladder Cancer Advocacy Network (BCAN). They provided a lot of valuable information and resources to me. I wanted to become more involved so I could bring awareness to my family and community. I became a patient advocate with BCAN and participated in advocacy day at Capital Hill, Think Tanks, health fairs, and Leadership Summits. I also became the walk organizer for the annual Walk To End Bladder Cancer. BCAN has definitely been that beacon of light in my life as I went through my journey with bladder cancer. I recently become the President of the Richmond BCAN Chapter. I'm definitely excited to have another platform to educate and increase awareness about bladder cancer in my community! Awareness is key!
#wewanttoendbladdercancer
In 1999, my husband Jack, was diagnosed with what was thought to be kidney stones and in 2000 was diagnosed with bladder cancer. There was little information to be found regarding bladder cancer. In 2000, Jack had his kidney removed. He had BCG treatments, was in 2 clinical trials and had chemotherapy for 3 years. It was in 2005, while still doing research on the internet, I came across BCAN. It was at that moment, I decided that I would do volunteer work for BCAN. Jack passed away in 2008. I have been a volunteer for BCAN for the past 10 yrs. My goal is to help others so that what happened to Jack may not have to happen to others. BCAN has greatly shed a light on bladder cancer Let us all continue to shed a light along with BCAN so that what happened to my husband, may not have to happen to others.
I'm a registered nurse at a large cancer center. I work primarily with patients diagnosed with bladder cancer and undergoing surgery. I've seen so many faces of bladder cancer and I've seen how difficult the entire bladder cancer journey can be for patients, from diagnosis to treatment to survivorship and sometimes unfortunately to hospice. I've seen faces overcome with fear, anxiety, stress, sadness and hopelessness. I've also seen faces of joy and hope. I've watched in awe as we have made huge strides in the treatment of metastatic bladder cancer and hope the industry soon follows with equal strides in the treatment of non-metastatic bladder cancer. For years I have directed my patients to the BCAN website to gain insight, find support and make connections with others diagnosed with bladder cancer. My patients express that BCAN has helped to decrease anxiety and relieve some of the stress of preparing for surgery or choosing a diversion. I’ve also been fundraising for BCAN by hosting the NYC bladder cancer walk for the last 4 years. The funds raised directly impact the very research I’ve watched change this disease and I’m so proud to give back to my patients in this way.
BCAN has created a research pathway for scientists for a specific type of cancer that had been ignored. BCAN funds important research, young investigators, and promotes collaboration.
Very impressed with their work because it has demonstrated results.
In 2015 when I was diagnosed with Bladder Cancer BCAN was there with online information, volunteers to talk with and to provide the support and answer the questions I had. It was with the information that they provided and the support they had which lead myself and another BCAN member to begin a local support group in Las Vegas, NV. My gratitude to BCAN is tremendous and they work and research they do to help find a cure for Bladder Cancer is unparalleled. Thank You- it's made my life so much better.
I am a BCAN Patient Volunteer because I know, firsthand, what it's like to have a cancer that up until 2005, had no public voice. My diagnosis of T2 muscle invasive bladder cancer, came in late 2003. At that time, I could find no patient info in printed form or online, (or in published medical journals) that could guide me toward treatment options.
I was indeed, very fortunate to have been referred to an Urologist/Surgeon in my home town, who could diagnose, offer treatment, and do my necessary surgery. Little did I understand then, how fortunate I was to have the expertise of this surgeon available to me.
Because I was forced to 'learn' by firsthand experience, how to navigate the surgery and recovery issues involved in my radical cystectomy in early 2004, I do understand the importance of having a support group/foundation to provide information and much needed mentoring. Because I have been clear (NED, no evidence of disease) since my surgery, I want to help others reach NED status too. Self-advocacy is still a must for us, in that experienced urologist/surgeons in bladder cancer are not always available to us.
BCAN's online website offers valuable tools for us, and the INSPIRE community (BCAN's online support community) brings support into our homes 24/7. We've learned, knowledge is power and that we need to become powerful.
When BCAN was established in November of 2005, I eagerly joined in their effort to provide support, awareness, and research funding. Because of their 'Beacon of light', BCAN has raised awareness, provided support, and much needed research funding which has given us major breakthroughs in our treatment options. This cancer's 'beacon of light, is slowly becoming brighter within the general public.
Since 2006, the Urological community too, has collaborated with BCAN through BCAN's annual Think Tank to provide new treatment options for us. Thank you Think Tank members!
I continue to volunteer for BCAN through peer to peer advocacy, facilitating our local support group, providing bladder cancer printed materials to the public and our local Urology practices (through health fairs or speaking engagements within my area). I do this with the growing hope that one day my advocacy will no longer be needed. The cause and cure for bladder cancer will be a 'done deal'.
I want all of us, diagnosed with this cancer, to be thriver's. Thanks to the efforts of BCAN, more of us are.
Karego
The BCAN group helped me understand my husband’s terrible diagnosis of metastatic bladder cancer in 2012. Their support will never be forgotten. Since his death, they have grown and become even more of an invaluable source for understanding of the disease and options available. Bravo!
When I told people I had cancer they would say, "Breast cancer? Colon cancer? Ovarian cancer?" "No, I replied, bladder cancer." Most people have never heard of bladder cancer. In 2016 at age 56 I was diagnosed with muscle-invasive bladder cancer, followed by chemotherapy and cystectomy. In June 2017 I metastasized and began immunotherapy. Here in 2018 I have a durable response with no lymph node involvement and a decreased, stable, liver lesion. BCAN's website gave me the information I needed to move forward in this journey. It's webinars are given by highly educated and respected physicians and people in the field of bladder cancer. The many people I have interacted with through the Inspire link on BCAN's website have provided me with invaluable information and support. I've been involved with three BCAN walks to bring education and awareness to the public, to help raise funds for research and to keep BCAN growing bigger and stronger. After attending a recent BCAN summit, it's clear that the entire BCAN community of staff and volunteers are striving to bring awareness and support to the bladder cancer community of patients, caregivers and medical community. Thank you BCAN.
I am the wife to a true Superman - a 3+ year survivor of bladder cancer and going strong! Until his diagnosis, I don't recall hearing or reading about this type of cancer. Suddenly it's all you know, hear or think about. And that's the noble and nimble work of BCAN, and what it has meant to us. We're not traditional 'joiners,' and don't readily wear badges or swag for causes, but his miracle-working UCSF surgeon Dr. Sima Porten asked us to join her for the walk, and since 2015 my husband and I (and often friends and family) lace up for the San Francisco walk each May. It's a beautiful day in the city surrounded by others like us - who never thought they'd be there, never wished the hardships to overcome...but who come to remind themselves 'not today, cancer,' to remember those who were lost to their fights, and to walk toward a future that had been or may still be uncertain. We are lifelong supporters of BCAN's non-profit cause to raise awareness of a non-glamorous cancer (strangely ironic term, I know), and bring all-important hope and resources which were/are invaluable to us and the men and women navigating treatment and recovery. The message continues to get out, and I wanted to take a moment to do my part to share our thanks that because of BCAN, we were more informed, supported and able to fight on!
I turned to BCAN to use its web site, INSPIRE. This deals more with INSPIRE than BCAN.
I agree with Diana, that the people were most helpful and courageous. The administrators and moderators at the web site were much less so.
As often happens when dealing with a potentially fatal disease, humor and comedy often surfaced in the web site discussion. I personally think that laughter and a PMA, positive mental attitude, is just as important as my visits to my doctor.
To make a long story short, certain humorous posts began to 'disappear.' Most of these post were written by the same person, let's call them X. An open and public discussion followed, and over 200 positive posts were listed compared to 3 or 6 negative ones. The word 'censorship' first appeared during this open give and take. Ideas for possible solutions were brought up. The important facts that, no one was being forced to read these posts, and that they could be deleted by a reader were brought up many times.
Teaminspire people asked for some quiet and calm so they could determine the best course to take. Many of us at the site thought that no real changes were needed, and the fact that a post could be deleted before it was opened was protection enough. This was especially true when the writers name was shown next to the post.
Finally, a post appeared that said humorous topics could be posted in an 'off topic' area of the site. I, and many others, thought this meant the end to someone being able to removing posts.
Wrong.
Worse yet, when an open and public discussion was attempted, those posts were removed. A private message was delivered to you stating that the only people you could post to would be the teaminspire people. The very people who were removing said posts in the first place.
Writing to Teaminspire, and BCAN- it's parent organization- yielded responses about site rules, that were vague at best, and 'one sided' at worst. Worse were the posts that received no response at all.
Once more, I will state that I agree with Diana. The people at this site, and the information, courage and emotions that they share are superb and priceless.
Some of the people running the site, however, are acting like petite dictators, worrywart parents and 'I know-whats-best-for -you' friends.
I have cancer, not a mental disorder. To assume that you know what I should see, hear and read is beyond belief. I am an older person and have seen and lived through many different things. The posts that started this whole tempest-in-a-teapot contain no words, deeds or thoughts that I haven't been bombarded with from my TV screen. I am capable of controling my own TV, thank you very much!!
None of the other sites I belong to are this heavy handed. They tend to police themselves with out resorting to outright censorship. Just because I disagree with them, none of them have suggested that I find another site where " I would be happier."
The people who use and need this site/organization get a big thumbs up.
The people who run and monitor this site/organization get a big thumbs down.
kenneth mason
When undergoing treatment for bladder cancer, this non-profit was the only place that gave me professional and precise information about what I was going to face during my surgery, chemo and life after treatment.
The best part is I get continued support from people around the world that have experienced the same situation.
Bladder cancer is not talked about. I could not find local support. We now have a local Dallas/Ft. Worth Chapter of BCAN so others will not have to feel alone and confused about this disease or treatment.
Review from Guidestar