What Is Time Toxicity in Advanced Bladder Cancer?

Treatment for advanced bladder cancer may provide survival benefits of several months to a year. During treatment decisions, these benefits must be balanced with downsides. Downsides include treatment side effects and expenses. Another downside often not considered enough is called "time toxicity."^1-3

Time toxicity is the time spent handling treatments. This includes time spent at medical visits, dealing with insurance, and managing care. The time toxicity of advanced bladder cancer can be significant. In some cases, it can cancel out the survival benefits. Lost time and lost control can affect your mental health.^3,4

What are examples of time toxicity in advanced bladder cancer treatment?

Time toxicity related to treatment applies to all people with a chronic condition. But it especially applies to people with advanced cancer. This is because treatment decisions need to be quick, and time is important.^3,4

While making treatment decisions, you may want to know the possible benefits. You may also want to know how the time related to treatment will be spent. For example, a treatment option that extends the length of your life may require more time away from home. Weighing the pros and cons may affect how you view different treatment options.^3-5

Some examples of time toxicity in advanced bladder cancer treatment include:^3,4

1. Healthcare appointments, including travel and wait times
2. Urgent or emergency care for side effects
3. Overnight hospital stays
4. Follow-up tests
5. Medicine pick-up
6. Home-based physical therapy and other care
7. Coordination of appointments and insurance
8. Difficulty attending family and other events because of treatment

For many people, treatment can feel like a full-time job. Sadly, doctors usually cannot predict the exact amount of time toxicity for your treatment. This makes it hard to make wise decisions about treatment.⁶

How can I predict the amount of time toxicity related to treatment?

Clinical studies provide some estimates of time toxicity related to treatment. When possible survival benefits are modest, time toxicity can outweigh those benefits. When survival benefits are greater, the time toxicity may be less than 20 percent of the time gained.⁴

But many factors can affect the amount of time toxicity. This includes the type of time toxicity, your healthcare and home setting, and other personal factors. Time is a resource that is not equally shared. Women, people of color, and people in places with few resources are more likely to be "time-poor."⁷

Some studies have tried to develop standards to measure time toxicity. Time toxicity can be seen as the number of days that you have physical contact with the healthcare system. Days without needing contact with the healthcare system are "home days." More home days may not always be good or preferred. But knowing the number of home days can help you find treatment options that match your goals.³

Clinical studies of advanced cancer treatments should start to report time toxicity. Using standard measurements, like home days, would help. More research on time toxicity outside of clinical studies is also needed. For example, digital technologies can be used to measure different time burdens of healthcare.^3,4,8

All of this research can help you gather information before you make treatment decisions. In the end, which treatment you choose is your personal decision. With your doctor's help, you can consider all the factors that are important to you before choosing a treatment.^3,4

How does time toxicity affect mental health?

Time is especially precious for people with advanced bladder cancer. Treatment may lead to a lot of time spent with the healthcare system. This time can take away from other life activities. For example, treatment can make it impossible to attend a long-planned family event.^3,4,6

Time toxicity often leads to a sense of lost control and independence. This can have a large impact on your mental health. For some people, more information about time toxicity during decision-making can help. Other people may prefer not to know about the amount of time toxicity.⁶

Consider asking your doctor specific questions about how treatment time will be spent. They may not be able to give specific information, but they can give you estimates. Ways to cope with the mental-health burden of time toxicity include:⁶

• Finding ways to do things you enjoyed before treatment or finding ways to adapt those activities
• Finding new hobbies you can enjoy during doctors' visits
• Talking to your doctor about ways to attend important life events
• Finding support groups
• Bringing up mental health concerns during appointments
• Leaning on family and friends for support