Cancer Support Community Launches New Study Focused on Bladder Cancer

February 10, 2022

The study will examine unmet needs, quality of life, and other issues impacting patients and caregivers


PHILADELPHIA, PA (February 10, 2022) – The Cancer Support Community (CSC), the world's largest provider of cancer support with a network of 190 locations across the United States and Canada, has recently expanded its innovative, flagship research study, the Cancer Experience Registry (CER). The online survey for patients and caregivers now includes questions specifically designed to capture the experience of those diagnosed with bladder cancer.

Bladder cancer is the fifth most common form of cancer overall and the fourth most common among men. An estimated 83,730 people were diagnosed with bladder cancer in 2021 alone.

“There is no one size fits all in terms of treatment,” said Karen Godfrey, bladder cancer survivor and patient advocate. “Self-advocacy, sharing of experiences, and demanding better treatment options are all vitally important.”

“A lot of treatment options for bladder cancer, such as cystectomy, urostomy, and ostomy, are unfamiliar to many people and can be frightening. There’s also some stigma associated with this diagnosis, so patients can be reluctant to talk about it,” said Heather Badt, Director of CSC’s Research and Training Institute. “We want to give a platform to everyone who has been touched by bladder cancer to shed light on the particular challenges that come with this diagnosis.” 

The CER asks people living with cancer to tell CSC bout their physical health, social well-being, work, stress, as well as treatment decision-making, the financial impact, and more. Results from the CER are used by health care workers, researchers, and policymakers to enact change and create better outcomes for this generation of patients, caregivers, and survivors, and the next.

Badt added, “No one should feel like they are facing cancer alone. By participating in the CER’s bladder cancer registry, you are joining a community of people united in improving the experience of people touched by this cancer.”

First launched in 2013, the CER has engaged nearly 19,000 patients, survivors, and caregivers. With the addition of bladder cancer specific questions, the CER now includes tailored questions for 14 specific cancer diagnoses. The CER remains open to all people living with cancer and to friends or family who have provided care. Learn more about the survey. 

CSC is grateful for the support of the Bladder Cancer Advocacy Network (BCAN) on this project.


About the Cancer Support Community

The Cancer Support Community (CSC) is a global nonprofit network of 190 locations, including CSC and Gilda's Club centers, hospital and clinics, and satellite locations that deliver $50 million in free support services to patients and families. In addition, CSC administers a toll-free helpline and produces award-winning educational resources that, together with the locations, reach more than one million people each year. Formed in 2009 by the merger of The Wellness Community and Gilda’s Club, CSC conducts cutting-edge research on the emotional, psychological, and financial journey of cancer patients. CSC also advocates at all levels of government for policies to help individuals whose lives have been disrupted by cancer. In January 2018, CSC welcomed Denver-based nonprofit MyLifeLine, a digital community that includes nearly 40,000 patients, caregivers, and their supporters that will enable CSC to scale its digital services in an innovative, groundbreaking way.