When you have metastatic bladder cancer, treatment plans often shift to address changes in the cancer, manage side effects, or take advantage of newer options. Even when medically necessary, making treatment adjustments can leave you wondering what it means and what comes next. “It’s normal to feel overwhelmed,” says David H. Aggen, MD, PhD, a genitourinary medical oncologist and cellular therapist at Memorial Sloan Kettering Cancer Center in New York City.
That said, having a strong relationship with your care team can help make these treatment transitions feel more manageable. Although it may be tempting to defer completely to your oncologist’s expertise, it’s just as important to speak up about what matters to you. “It really helps to be an informed, active participant in your care,” says Matthew Galsky, MD, director of genitourinary medical oncology and codirector of the Center of Excellence for Bladder Cancer at Mount Sinai Tisch Cancer Center in New York City.
When you take an active role in cancer management, you can build a partnership with your care team that blends their medical expertise with the realities of your day-to-day life. That starts with understanding the goals of treatment, recognizing your role in decision-making, and building trust with your oncologist.
The ‘Why’ Behind Cancer Treatment Decisions
The goals of metastatic bladder cancer treatment are eased symptoms, slowed cancer growth, and an improved outlook, all while factoring in your quality of life. Treatment recommendations are typically based on various factors, such as:
Specific tumor characteristics and biomarkers
Treatment safety profile
Risk vs. benefit analysis
Side effects
Any treatments you’ve already tried
Previous health history
Current health status
Your personal preferences
“These are key components for selecting the best treatment approach,” says Dr. Galsky, no matter where you are in the treatment journey.
Throughout the treatment process, you’ll undergo routine monitoring to evaluate how well it’s working and check for any remaining signs of cancer. These check-ins are also a time to touch base on tolerability and side effects. Together, this information helps guide the next steps.
For example, your oncologist may recommend adjusting the dosage, stopping a medication, or switching to a new option if the cancer isn’t responding, the cancer progresses, or side effects become difficult to tolerate. In some cases, your plan may expand to include supportive approaches, such as palliative care, to help manage symptoms and improve your quality of life.
At each stage, your oncologist should sit down with you to review your options, the goals of treatment, and why they recommend a particular approach, says Dr. Aggen. These conversations are also your opportunity to ask questions, voice concerns, or share your thoughts about the cancer itself, the treatment plan, or how symptoms are affecting your hobbies and goals.
Your Role in Shared Decision-Making for Metastatic Bladder Cancer
Your oncologist brings deep clinical knowledge of metastatic bladder cancer to the table. But you bring something equally essential: insight into how you feel, what you can tolerate, and what you want your life to look like during treatment.
When you and your oncologist combine those perspectives to form an individualized treatment plan, it’s known as shared decision-making. And it works. One survey of adults with urologic cancer found that the majority of those who participated in shared decision-making felt more knowledgeable about treatment options, and it helped them make treatment decisions.
Gail Dykstra, who was diagnosed with metastatic bladder cancer in 2017, can attest to its value. After treatment, Dykstra has had no evidence of disease since 2022 — something she largely credits to her close relationship with her oncologist. “I was very comfortable being open with my oncologist, and I felt not only heard and respected, but involved.”
Still, Galsky acknowledges that shared decision-making can be challenging. “Often, there’s limited time in consultation sessions, plus lots of information to cover," he says. This means your contributions may unintentionally fall off the radar.
“But communicating your personal goals, whether it’s maximum longevity or optimal quality of life, is an incredibly important part of the decision-making process,” says Galsky.
That’s because what matters most to you in your treatment journey may differ from what’s important to others. “For some, the goal may be to focus on symptom control. For others, the goal might be to live as long as possible,” says Aggen. “And that may help frame some factors around how treatment is delivered, so establishing that early on in the treatment process is important to keep everyone on the same page.”
How to Build and Maintain Doctor-Patient Trust
Developing a relationship with your oncology team takes time. It starts with your initial appointment and builds from there, says Aggen. “After the best oncology visits, you should leave feeling informed, supported, and clear about next steps, even if the road ahead hasn’t been fully mapped out yet.”
Here are a few ways you can help strengthen trust with your oncology team:
Prepare before each appointment. “Write down a few points that you really want to have addressed, and make sure to bring that with you, because you only have a very short period of time to meet with your care team member,” says Dykstra, who is a bladder cancer advocate with the Bladder Cancer Advocacy Network. Without notes to refer to, “It’s easy to find yourself talking about their agenda, rather than your agenda,” she says.
Be honest about how you’re doing. “It’s easy when somebody asks, ‘How are you doing?’ to reply, ‘I’m just fine,’” says Dykstra. “But you need to recognize when you’re not feeling great and speak up about it.” That goes for anything from symptoms to side effects. “Sometimes, people are hesitant to talk about side effects out of fear that we’ll stop treatment or reduce doses, even if it’s working,” says Galsky. “But there’s a lot we can do to make things much more tolerable and strike a better balance.”
Bring in backup. Have a family member or friend come to your appointments with you, Aggen advises. “They often think differently, and it’s always good to have a second set of eyes and ears as you’re going through what can be a pretty complex discussion.” And even if your loved one can’t be with you in person, have them on the phone with you. “I’ve had patients who ask to record our conversations on their phone,” he says, “so they can listen to it again later and write down questions they have ahead of subsequent visits.”
The Takeaway
Treatment changes in metastatic bladder cancer are common, and your oncology team should clearly explain the “why” behind every shift.
Shared decision-making works best when you’re honest about side effects, fears, and what matters most to you — whether that’s longevity, quality of life, or a mix of both.
Building a trusting relationship with your oncology team takes time and a lot of preparation, clear communication, and support from loved ones who can help you absorb complex information.
EDITORIAL SOURCES
Everyday Health follows strict sourcing guidelines to ensure the accuracy of its content, outlined in our editorial policy. We use only trustworthy sources, including peer-reviewed studies, board-certified medical experts, patients with lived experience, and information from top institutions.
Fortune EE et al. The Role of Patient-Centered Communication and Shared Decision-Making in Treatment Knowledge and Decision Preparedness Among People With Urologic Cancers: Findings From the Cancer Experience Registry. Cancer Support Community.
Daniel Landau, MD, is a distinguished board-certified hematologist-oncologist with a career that has spanned two eminent institutions: the Orlando Health Cancer Institute and the Medical University of South Carolina. With a specialized interest in genitourinary oncology and hematology, he has been at the forefront of managing both benign and malignant conditions.
Dr. Landau is a pioneering figure in integrating advanced technology into oncology, having served as a director of telemedicine services. Under his leadership, multiple innovative systems have been designed and piloted, all with a singular focus: enhancing the patient experience.
Beyond his clinical and technological endeavors, Landau is deeply committed to medical education. He has dedicated significant time and expertise to nurturing the skills of medical students, residents, and fellows, ensuring that the flame of knowledge and compassion burns bright in the next generation of oncologists.
Kerry Weiss is a New York–based freelance writer, editor, and content strategist specializing in health and wellness. She has contributed to a variety of online publications, including Healthline, WebMD, Sharecare, Twill Care, and What to Expect.
