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Bladder Cancer Resources

Bladder Cancer Awareness Quiz

How much do you know about bladder cancer?

KNOW THE FACTS

Bladder cancer is the 6th most commonly diagnosed cancer in the United States – 4th among men and 11th among women.  Bladder cancer has a 50% – 80% recurrence rate.

In 2018, over 81,000 people will be newly diagnosed and 17,240 are expected to die from the disease.  There are over six hundred thousand people living with bladder cancer in the United States. Women are more likely to be diagnosed with bladder cancer later and have a worse prognosis than men at almost every stage of the disease.

Help us raise awareness where you live, work and worship. Print copies of the Bladder Cancer Awareness Quiz and share with your friends and family. Click here to download now.

BCAN RESOURCES

The Bladder Cancer Advocacy Network (BCAN) is the leading voice of bladder cancer.  We are a community of survivors, caregivers, family members, and medical professionals.  Our mission is to increase public awareness about bladder cancer, advance bladder cancer research, and provide educational and support services for the bladder cancer community.  BCAN has always believed that patients should be educated, informed and active partners in their treatments. Our resources are meant to help patients know more about their disease and treatment options.

BCAN’s free resources include:

BCAN Website: Visit www.bcan.org  to access bladder cancer information and resources.


Bladder Cancer Basics: Request your free copy to learn about the types of tests used to diagnose bladder cancer, what it means to “stage” and “grade” the disease, an overview of the types of treatments available, including recently approved immunotherapies, as well as resources for the proactive patient. Available in English and Spanish.

To download a PDF of the handbook, please click here

To have a copy of the handbook mailed to you, please click here


Get the Facts:  Our plain language tip sheets from our patients about what to expect before, during and after common bladder cancer procedures.  This resource was developed with guidance by BCAN’s Survivorship Group.


Patient Insight Webinars:  BCAN’s live programs bring the experts to you and even allow you to ask questions from the comfort of your home. Archived recordings are always available as well as transcripts with slides to print or share.


Clinical Trials Dashboard: Search for bladder cancer research trials that are open around the country.  You can search by patient diagnosis and by state, save and even send information about specific trials to your loved ones or to your doctor.


BCAN Connection:  This support line for patients, caregivers, family members, survivors and co-survivors is open year-round, except for holidays.  Volunteers are able to provide support for callers from anywhere in the United States.

Call 1-888-901-2226 (BCAN) – Ext. 207


Survivor 2 Survivor:  This program offers phone support to newly diagnosed bladder cancer patients.  Bladder cancer survivors and caregivers volunteer for this program, sharing their experience, answering patient questions and, most importantly, offering hope.

Call 1-888-901-2226 (BCAN) – Ext. 212


The Beacon

Bi-annual BCAN Newsletters.

Click below to read The Beacon | Fall 2017.

Click below to read The Beacon | Winter 2017.

Click below to read The Beacon | Fall 2016.

Click Here to Read About Mike's Bladder Cancer Journey

As an active and healthy 58-year-old, Mike Lahm was stunned when his doctor gave him a diagnosis of bladder cancer. Though the doctor did not say so explicitly, the news that the cancer was muscle invasive and likely in some lymph nodes led Mike to believe that this meant he was a Stage IV (or metastatic) patient, the most serious possible cancer diagnosis.

In those first two weeks following this life-altering news, doctors whisked him through a procedure to remove a tumor from his bladder; began chemotherapy and; informed him that he would need to have his bladder removed (a radical cystectomy).

Like many people, Mike had never heard of bladder cancer before the diagnosis, despite its being the sixth most commonly diagnosed cancer in the United States with about 81,000 new cases and more than 17,000 deaths per year. Yet suddenly doctors were asking him to quickly make decisions that would impact his quality of life for the rest of his life.

“Looking back, I realize there were symptoms,” Mike recalled. “But they came on gradually and, because they could also be associated with aging, I didn’t worry about them too much.”  He did notice that he was urinating more frequently and with some discomfort and, over time, he started to become anxious about attending public events that offered limited access to a restroom.

But it was when he began to see ribbons of blood in his urine that he visited his primary care doctor. A urinalysis was inconclusive and when antibiotics did not alleviate the symptoms, the doctor ordered a CT scan that revealed a tumor and referred him to a urologist.

He quickly started researching bladder cancer and found little useful information until he discovered the Bladder Cancer Advocacy Network (www.bcan.org) known as BCAN (pronounced “beacon”). Founded by Diane Zipursky Quale and her husband John Quale in 2005, BCAN is a wide-reaching resource for bladder cancer patients and their families.

Mike began reading the many resources on bcan.org including information about stages of the disease, treatment options, bladder removal surgery, and urinary diversion options. BCAN also offers an invaluable support community for patients. As Mike explored BCAN’s website and other patients’ stories, he began to feel well informed and to have a better grasp of important questions to ask his doctor.

He described a “defining moment” as one of the conversations with his urologist as they discussed his upcoming surgery and the choice of a neobladder, constructed of tissue from his intestines, to replace his cancerous bladder.

“As I was listening to him explain the surgery, it became clear that I wasn’t feeling comfortable with the idea of his performing the surgery,” Mike recalled.

The doctor was in his 70s, had a cold at the time, and simply struck Mike as rather frail. Most importantly, though, he learned that this doctor performed only two or three neobladder surgeries per year. From his BCAN research and from other patients, Mike had learned how crucial it is that both your surgeon and the hospital have significant experience with creating neobladders.

His research gave him the confidence to “break up” with this doctor and seek an opinion at a National Cancer Institute (NCI)-designated cancer center.  At The Ohio State University’s James Cancer Center in Columbus, Mike met with an urologist who performs two to three neobladder surgeries per week. Mike also noticed that because of the high volume of such surgeries, the nursing staff is very familiar with the common recovery challenges of radical cystectomy patients.

Mike’s new urologist gave him the good news that his cancer was more likely Stage II rather than Stage IV because he did not believe lymph nodes were involved. In June 2016, Mike underwent a successful 13 ½ -hour surgery and soon after he was on the road to recovery and now, two years later, he remains cancer free. He undergoes periodic CT scans to ensure the cancer has not returned. The scans will become less frequent the longer he remains cancer free.

His advice for others?

“If you see blood in your urine, have urgency or frequency, you may want to see an urologist and don’t be afraid to change doctors if you are uncomfortable,” he said.  “If you do receive a bladder cancer diagnosis, be sure to visit www.bcan.org for information, including questions to ask your doctor.  Should you need surgery, recognize that the recovery will be a challenging road but that it will be worth it. If you can squeeze in a vacation or quality time with your spouse or family beforehand, do it, because the recovery will consume you for a while.”

Healing is about getting better. But it is also about giving back to the communities that help you get through this difficult time.  I am committed to educating people about this disease, providing comfort to those going through a similar experience and offering financial support to organizations like BCAN that fund research to help eradicate bladder cancer.