How to Self-Advocate During Bladder Cancer Awareness Month

With bladder cancer awareness month in May, it’s important for patients and survivors to know how to advocate for themselves, two experts told CURE®.

Patients who have received a diagnosis of bladder cancer should “go seek out a second opinion,” said Dr. Jonathan Wright.

Wright is an associate professor at Fred Hutchinson Cancer Center and medical director, University of Washington Center Urology Clinic.

Because bladder cancer is not “one size fits all,” he said, it’s important to seek different types of providers. Some may include a urologist, radiation oncologist or another medical oncologist, Wright suggested.

He noted that “It’s not one size fits all,” so it’s important for patients to ask if they would benefit from speaking with another doctor about their cancer.

READ MORE: 4 Questions to Ask After a Bladder Cancer Diagnosis

Participating in annual bladder cancer walks hosted by the Bladder Cancer Advocacy Network during May is another way to spread awareness, said Dr. Petros Grivas.

“We’re doing a walk every year and it happens in May,” he said. “We have the privilege and opportunity to work with amazing people, our patients, patient advocates and the Bladder Cancer Advocacy Network here at Fred Hutch and UW.”

Grivas is a board-certified medical oncologist and the clinical director of the genitourinary cancers program at Fred Hutchinson Cancer Center and the University of Washington.

Wright and Grivas sat down with CURE® to discuss bladder cancer awareness month and ways patients and survivors can advocate for themselves.

Transcript:

Wright: It's always intimidating when you go to see the doctor, I go see my doctor too, and it's intimidating for me as well. You're nervous, you're scared, so one of the things we really work on is building that relationship with the patients because if you feel comfortable with your physician, then you're going to share more information.

What is great is if you can try to bring somebody with you to the doctor's office, not everybody can. Maybe it's just a neighbor or friend too. But if you don't have anybody, then [make sure] you're still going to come and we're going to take care of you. It is one thing we can do to help make sure that we're hearing everything and asking some of the questions that we might be afraid to ask and realize the doctor can only help you if you give them the information. So that's what I mean by self-advocating, speak up for yourself. Especially now with so much of the medical records where you get to have your own records on your smartphone or your computer. I encourage patients to go over that and ask questions: “What [and] why this?” and “What does this mean?” So, it’s different ways to empower them to then help us take better care of them too.

Grivas: These are great points, a very important point to highlight what Wright just said, and in the same line, speaking about what other people have gone through [and their] same experiences. Can we learn from people who have had the cystectomy? Meaning the removal of the bladder, which Jonathan is an expert on. Can we think about other therapies, medical therapies and sometimes connecting with other patients? The Bladder Cancer Advocacy Network is a good example of that because it can connect the patient to peers who are survivors, and that will be a great opportunity for them.

Also, ask about clinical trials and research. I think there will be an important opportunity so they can ask how they can help themselves through innovative treatments, but also help Jonathan, myself and others to generate important no less to help future patients.

Transcript was edited for clarity and conciseness.

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