5 questions for metastatic bladder cancer caregivers

Metastatic urothelial bladder cancer is a type of cancer that began in the bladder but has spread to other areas of the body, such as lymph nodes, bones, and/or other organs, such as the lungs. It is a type of urothelial carcinoma, a cancer that begins in the cells that make up the inner lining of the organs and structures of the urinary tract.

People with cancer often require help from caregivers as they navigate diagnosis, treatment decisions, and treatment. If a loved one has recently been diagnosed with this type of cancer, you are likely wondering what happens next and what you can do as a caregiver.

While everyone’s experience with cancer is different, answering the questions below can help you get started.

Do we need to follow up on any tests or exams?

An initial diagnosis of metastatic urothelial bladder cancer is typically followed by additional tests—biopsies of the primary tumor and metastases, imaging tests (such as MRIs, PET scans, or X-rays), and lab work.

The goal of these tests and exams is to give you, your loved one, and your healthcare team a detailed understanding of the cancer, which will help determine how to approach treatment. Treatment for metastatic bladder cancer is highly individualized, meaning it is different for every person. It can include a number of different cancer drugs, as well as other types of therapy.

Some questions your loved one and/or you should discuss with your healthcare team:

• What tests and exams have been done? What have we learned about the cancer? What do we still need to learn?
• What additional tests or exams do we need? What can the results tell us?
• Do we need biomarker testing or molecular testing?
• Where will we go for tests? What do we need to do to prepare?
• How will we receive test results? Who will explain what the test results mean?
• How do we get copies of test results?

What type of help will my loved one need?

While you won’t be able to plan for every detail, it’s a good idea to start asking this question. Everyone’s needs are a bit different, but your loved one’s healthcare team can give you an idea of what to expect during treatment. This can help you plan things like meals, transportation to and from appointments, time away from work, and managing side effects from treatment.

Who is in our support network?

A support network is made up of the people who can help and assist you and your loved one. Make a list of the friends, family members, and resources in your community. Also talk to your loved one’s healthcare team about the resources that are available, such as counseling, oncology social workers, support groups, and organizations that provide help to people with cancer and their caregivers.

Who will be providing what care?

Not every family member or friend will be suited for every caregiving task. Talk to the people in your support network. Everyone should be honest about what they are capable of, what they can do to help (and what they can’t do), and how caregiving will impact their lives.

Remember, there are lots of ways to help. Taking on things like grocery shopping, household chores, errands, and keeping other family members updated can make things easier for the person with cancer and people taking on primary caregiving responsibilities.

How does the person with cancer feel about caregiving?

Accepting help is often not easy, and adjusting to needing a significant amount of help from loved ones can be difficult for a person with cancer. They may feel frustrated or guilty—and these feelings are perfectly normal. Check in with your loved one and try to understand how they feel about the caregiving arrangements.