Metastatic bladder cancer: building your support network

Being diagnosed with metastatic urothelial bladder cancer can feel overwhelming. A person will need to undergo multiple tests to learn where the cancer has spread and how it is behaving. They will need to make decisions about treatment. They will need to share a diagnosis with family and friends.

During all of this, they must cope with the fact that they are living with an advanced stage IV cancer. This may involve feelings of grief and uncertainty, changes in how a person feels about their body, and concerns about how cancer will affect relationships, finances, and other important aspects of life.

Everyone living with metastatic urothelial bladder cancer can benefit from having a good support network.

What is a support network?

Your support network is made up of the people who are able to provide help and assistance to you and your loved ones. Some of the people who can be a part of a support system include:

• Your healthcare team
• Friends and loved ones
• Oncology social workers
• Counselors and mental health professionals
• Support groups

Your healthcare team

Whenever possible, metastatic urothelial bladder cancer should be treated by a multidisciplinary team. This is a team made up of different healthcare providers who specialize in different aspects of cancer treatment. It is typically overseen by a urologic oncologist, a medical doctor that specializes in cancers that affect the urinary tract as well as cancers that affect the male reproductive system.

Your healthcare team is there to support you through treatment. Share your concerns, your questions, the challenges you are facing, and how you are feeling both physically and mentally. In many situations, your healthcare providers will have strategies that can help you.

Friends and loved ones

Sometimes called “social support,” support from friends and loved ones is valuable when living with cancer, and it can take many forms. It can mean help with practical things, like errands, groceries, or transportation. It can be having someone to talk to about what you are feeling. It can be having a caregiver who can accompany you to appointments and be involved in treatment decisions.

Spend time thinking about what you need and who you can rely on for support in different circumstances. It can be equally important to think about the types of support that you do not need—people may reach out with ideas on how to help, but these ideas may not always align with what you want or need.

Oncology social workers

An oncology social worker is a licensed professional who helps guide people with cancer and their loved ones through the many aspects of treating cancer. This includes help understanding your diagnosis and treatment options, navigating the healthcare system and insurance, applying for financial support, and accessing resources for people with cancer. Oncology social workers can also provide counseling.

Counselors or mental health professionals

Counseling can be valuable to people living with cancer as well as loved ones and caregivers. Even if you have never felt you needed to before, consider participating in counseling with an oncology social worker, mental health professional, a spiritual or religious advisor, or another type of counselor.

Living with cancer can involve unique mental and emotional challenges that you may not have experienced before, and counseling can help you learn ways to cope with distress, make decisions, and communicate with the people in your life.

Support groups

Consider participating in a support group for people who are living with bladder cancer and/or metastatic cancer, either a group that connects online or one that meets in person. Support groups are an opportunity to connect with others who know what the experience can be like.

Ask a healthcare team or oncology social worker if they can recommend a support group. You can also check with organizations such as CancerCare and the Bladder Cancer Advocacy Network.