Advancing Bladder Cancer Research:
BCAN’s Bladder Cancer Think Tank 2010

After reading our November 2010 newsletter article about the young investigators who came to BCAN’s last Think Tank Meeting, many asked for more information about the research being done and how it could apply to you. This describes some of the exciting bladder cancer research projects coming out of the Think Tank. Some of the projects are already finished, and some are still in progress. We hope you find this helpful!

More than 90 leading experts – bladder cancer researchers, physicians, patient advocates and industry partners – attended BCAN’s fifth annual Bladder Cancer Think Tank meeting, the only annual scientific meeting in North America to focus solely on bladder cancer.

In evaluations from the Think Tank, participants remarked that they found this meeting very valuable and unique. The Think Tank is designed to foster collaboration among scientists and institutions to advance bladder cancer research.

One feature that makes the Think Tank different from other scientific meetings is its use of smaller working groups to coordinate collaborative efforts at the meeting, and throughout the year. Small working groups were created at the 2009 Think Tank Meeting to address specific issues in bladder cancer. Each meeting attendee in 2009 and 2010 was assigned to participate in one of these working groups. In August, the working groups reported on the work they had done since the 2009 meeting and planned how they would continue their work through the 2011 meeting. Read on to learn more about their efforts, and what they hope to accomplish.

Think Tank Projects – Perioperative Chemotherapy

The Standardization of Treatment working group is working to improve the quality of care provided to bladder cancer patients by finding ways to better standardize the treatment given. Their challenge is to determine what care is being given now, what the appropriate care is, and what can be done to make sure that doctors then give that care.

In bladder cancer patients, perioperative chemotherapy refers to chemotherapy that is administered before or after radical cystectomy (RC). Current guidelines recommend that doctors consider administering perioperative chemotherapy to most patients with muscle-invasive disease either before (neoadjuvant chemotherapy) or after (adjuvant chemotherapy) radical cystectomy. Although it is not appropriate in all cases, clinical trials have shown that chemotherapy provides an overall survival benefit for survivors with muscle-invasive disease.

To see whether this recommendation was being followed, the group looked at what doctors at academic institutions were actually doing in their practices. Researchers looked back at over 4,000 patient records from twelve institutions to see whether these patients received adjuvant or neoadjuvant chemotherapy, or if they did not receive any chemotherapy. They found that only 42% of patients were given perioperative chemotherapy. However, since they were just looking back at patient records, researchers could not see the reasons that so few patients were given perioperative chemotherapy. Potential reasons could be that patients decided against the chemo offered by their doctor, or that doctors assumed that older patients would not want chemo.

In their next project, this working group hopes to determine the reasons that chemo is not given. The group developed five “Quality Care Indicators” to help ensure all patients who are good candidates for chemo are offered it. Doctors at several institutions agreed to adopt these Quality Care Indicators as a standard of care in their practice. Now, the group is working to collect data from the patients being seen by those doctors to see if the doctors actually comply with the proposed Quality Care Indicators. When doctors do not follow the agreed upon guidelines, the group will ask them to give reasons why.

Ultimately, the group hopes to determine why many doctors do not comply with currently recommended guidelines, and what can be done to remove the obstacles and ensure that doctors give all patients the appropriate care.

Think Tank Projects – Follow-Up Care After Radical Cystectomy

The Standardization of Treatment group is also examining follow-up care after radical cystectomy. They conducted two surveys, and found that there is no uniformity among urologists about how often surveillance is necessary and what type of post-cystectomy surveillance should be used. Even when urologists set a schedule for follow-up, they and their patients often do not comply with it. Eventually, this working group hopes to determine what post-cystectomy surveillance will lead to the best outcomes for patients.

Think Tank Projects – Data Collection for Future Research

Another working group is focusing on Data Mining and Collaboration. This group is coming up with standards for what data should be collected from each bladder cancer patient and how the data should be stored and processed. Data collection standards make it possible to start large-scale bladder cancer studies that use data and tissue samples from patients from multiple institutions. If the data is different from institution to institution, researchers can only comparisons between patient groups are limited to the patients at their home institution.

Right now, there are very few standards for what data should be collected from bladder cancer patients. This group is working to create a standardized template for doctors at research institutions to follow when collecting data in patient charts. There are a number of research institutions who are working to make their data collection guidelines match this working group’s recommendations. The group then hopes to test the implementation of these data collection standards and offer recommendations for how other institutions can begin the data collection process.

This group has also already conducted a survey of doctors asking how they treat patients with non-muscle invasive bladder cancer. They found that, much like with advanced bladder cancer, there was a great deal of variation in the care doctors said they provided. In the future, they plan to survey doctors as they treat patients to see if their actual treatment practices are substantially different from how the doctors report they treat patients.

Think Tank Projects – Multi-Institutional Tissue and Specimen Bank

One example of a project working group members have collaborated on is an effort to establish a virtual biobank for tissue, blood, and urine samples of bladder cancer patients. Currently, most bladder cancer tissue samples are only available to investigators at the institution where the tissue is collected. The biobank would allow doctors from different institutions to submit data and tissue samples from large numbers of patients. Then, researchers from across the country could look at data from a much larger group of patients and check for patterns that might be worth investigating.

Think Tank Projects – Bladder Cancer Research Network

One working group established the Bladder Cancer Research Network (BCRN). BCRN was created as a subsidiary of BCAN by the BCAN board. BCAN and Think Tank participants plan for BCRN to help to attract additional funds specifically for bladder cancer research, to recommend bladder cancer research priorities, and to continue to encourage collaborative projects to improve current treatments and find better, more effective ones.

Think Tank Projects – Survivorship

Another working group is devoted to improving the experiences and outcomes of bladder cancer patients. Participants in the Survivorship working group are developing a “care plan” specifically for bladder cancer survivors who have completed treatment. This will be a template for doctors to use with survivors to discuss a schedule for follow-up tests, and to provide the survivor with resources to ensure best quality of life. The group hopes to test a pilot version of the care plan in the coming year.

The group is also working to put together patient tips for survivors at every stage of their bladder cancer journey. For instance, one toolkit module talks about how to get a second opinion. As the toolkit is finished, the modules will be posted on the BCAN website. We will keep you updated!

Think Tank Projects – Evaluating Clinical Staging

Another project the Standardization of Treatment group is collaborating on is a survey to evaluate the current state of clinical staging of bladder cancer. (Clinical staging is determining how far the cancer has spread without actually removing the bladder or lymph nodes. Pathological staging involves removing the bladder or lymph nodes.) When staging patients with bladder cancer, there is no one clearly established standard of care. Doctors can use a variety of tests to determine the stage . Accurate staging is important because the stage affects what treatments should be used. Unfortunately, current clinical staging of bladder cancer often underestimates or overestimates the extent of the disease.

What’s Next

BCAN is proud of our efforts to bring together the leading experts in bladder cancer to collaborate on research and work toward improving detection, diagnosis and treatment. With collaboration, we hope to see real advances. With collaboration and more research funding, we hope to eventually find a cure.

It was a privilege to attend the Think Tank as a survivor representative. I was truly impressed by the enthusiasm and commitment of the country’s top bladder cancer researchers at this meeting. They are tired of bladder cancer research being underfunded and were eager to work together to move bladder cancer research forward faster.
– Gene Breslow, BCAN Volunteer