Complementary Care for Metastatic Bladder Cancer: How Your Care Team Can Help

When you’re living with metastatic bladder cancer, it can be hard to see past the lab workups, routine scans, and treatment plans. But it’s important that you — your goals, your hobbies, your daily activities — don’t get lost in your care.

“When I think about living with cancer, time and quality of life are integral components,” says Shanthi Sivendran, MD, senior vice president of cancer treatment support for the American Cancer Society.

The problem is, some people can be hesitant to talk about their quality of life with their care team, partly because they may not think it’s a high priority. Here’s how to broach the subject during your next oncology appointment — and what your doctor may recommend next.

Fit Your Routine Into the Treatment Conversation

Your cancer team sees your lab results. They don’t see you struggling to stay awake during dinner or having to skip your morning walks. To get the best care, explain how symptoms are affecting your daily life.

For example, instead of telling your care team, “I’m tired,” explain how fatigue interferes with your daily activities, goals, or hobbies. When one of Dr. Sivendran’s patients told her that he felt more tired than usual, she asked for specifics. He explained that he could only ride his bike for 30 miles a day, instead of his usual 40.

“That context is super important,” says Sivendran. “There’s a difference between that and saying, ‘I was biking 40 miles a day, and now it’s difficult to even get out of bed and put my shoes on.’ One situation may be reframing expectations, and the other may be considering a reduction in the dose of the treatment or doing additional blood work.”

Tell your care team if you have any bucket-list goals or upcoming milestones. Whether it’s a wedding, a trip, or a graduation, your life doesn’t necessarily have to stop because of cancer. Plus, you may have more options than you think. “We may be able to adjust your treatment or dosage schedule or take a treatment break,” says Sivendran.

Prioritizing your quality of life also means being honest about where you want to spend your time, which may change over time. “In the beginning, you may want to take the time to go through those treatments and try to gain more time,” she says. “But you may also get to a point where you want to spend less time in the clinic and more time with family or friends.”

The Benefits of Complementary Care for Metastatic Bladder Cancer

Your doctors may recommend a palliative care team, who can help you focus on living as well as possible. Palliative care isn’t the same as hospice care, which is designed to help people feel comfortable at the end of life. Rather, “Palliative care is a specialized support system that can be started the day you are diagnosed,” says Sivendran.

Here are a few key members to add to your palliative care team and what they can do for you:

Physical Therapist

Dietitian

Some people with metastatic bladder cancer experience a loss of appetite, an increase in satiety, or general changes in taste. A dietitian can help you manage these eating-related symptoms, while developing a diet that contains the nutrients you need. Working with a dietitian can also ease some of the anxiety or tension around mealtime, including during family meals. “We often express our love through food,” says Sivendran, which is why it’s hard for loved ones when a person won’t eat.

Mental Health Professional

Questions to Ask Your Care Team About Complementary Care

At your next appointment, ask your team these questions. They can help you develop a palliative care plan that supports your needs and goals:

• “[Symptom] is making it hard to [activity I care about]. What can we do so I can keep doing what matters to me?”
• “How can we balance treatment with living well? Are there ways to make the time I spend in treatment feel more manageable?”
• “I have a big event coming up. How can we plan treatment so I can participate and feel my best?”
• “Our roles at home are shifting, and it’s stressful. What resources or strategies can help me and my loved ones navigate this?”
• “Eating has become challenging, and meals feel stressful. How can I maintain nutrition and my energy without adding tension at home?”
• “I’m worried about losing strength or mobility during treatment. Are there ways to maintain my independence and keep doing the things I love?”
• “I sometimes feel anxious about or overwhelmed by scans or appointments. What support is available for me and my family?”
• “How can we prioritize treatments and daily activities in a way that fits my energy levels?”

Speaking up about your daily routine and asking for complementary support are key to making sure your care for metastatic bladder cancer is built around you. “Being as specific as possible about how symptoms impact your daily life can help your doctor understand what matters most and how to support you,” says Sivendran.

The Takeaway

• Part of managing metastatic bladder cancer is ensuring you have a good quality of life. Share your goals with your care team, so they can develop a treatment plan that supports your daily life.
• Be specific about symptoms. Replace general descriptions, such as, “I'm tired,” with specific statements, such as, “I can’t get out of bed in the morning.” This gives your team more insight into the limitations you’re having.
• Ask about palliative care. Getting extra support — nutritionally, physically, and psychologically — can help you preserve your independence.