How to Find Advanced Peer Support for Metastatic Bladder Cancer

Being diagnosed with metastatic bladder cancer (or metastatic carcinoma) can be a uniquely isolating experience.

It’s “a life-altering, day-to-day journey,” says Shanthi Sivendran, MD, senior vice president of cancer treatment support at the American Cancer Society and a medical oncologist at Penn Medicine in Lancaster, Pennsylvania. And at first, not everyone has the support they need.

After a diagnosis, friends, colleagues, and even family members can pull away, because the news feels so overwhelming (a phenomenon known as “cancer ghosting”), Dr. Sivendran explains. “They don’t really know how to help or just feel uncomfortable,” she says.

A support group can offer you a sense of community, but given the unique challenges people with metastatic bladder cancer face, you may want to join one that’s targeted to the condition. Here’s how to find the best support for you.

People in general cancer groups may not understand the specific challenges of living with metastatic bladder cancer, including urinary problems, persistent bladder infections, or the need to wear an ostomy bag, says Sivendran.

“If someone hasn’t experienced that themselves, it can be hard to fully understand,” she says. “Having someone with that same lived experience helps — not just to say, ‘I get it, this is tough,’ but also to share practical advice like how to manage your ostomy bag.”

To find your community, Sivendran suggests building a “support portfolio,” which is similar to your friend groups in life. “I have my school mom friends, my medicine friends, my tennis friends,” she says. “It’s the same thing when you’re creating a peer support group.” Different groups help fulfill different needs.

Start by looking to national, specialized organizations for these varied, targeted connections:

• Bladder Cancer Advocacy Network (BCAN) With their Survivor 2 Survivor program, BCAN pairs you with a volunteer who has navigated similar cancer stages. They also provide virtual, in-person, and hybrid support groups to fit your energy level.
• American Cancer Society (ACS) Their app, ACS Cares, allows you to “digitally connect with a peer volunteer who has a shared lived experience,” such as by stage and type of cancer, veteran status, or whether you’re a parent, says Sivendran.
• Patient Connect Programs Many cancer centers recognized by the National Cancer Institute offer internal peer matching, where you’re partnered with a person who can offer practical advice on everything from starting a clinical trial to living with a urostomy.
• Telehealth Options Virtual support is ideal if you’re too tired to travel or don’t want to return to the clinic for a meeting. Organizations such as CancerCare offer free, moderated online support groups led by oncology social workers.

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   Telehealth also allows you to regulate how much support you’re getting and at what time. “In a period of your life where you need [more] of it, you can increase the dose. And when you need quiet time, you can reduce the dose,” says Sivendran.

You might want to consider adding an oncology social worker (OSW) to your cancer care team. They are uniquely trained to help bridge the gap between treatment and your emotional well-being.

“They are there to connect patients to resources, to [offer] emotional support, and to help break down the silos of healthcare,” says Sivendran. OSWs are not just for end-of-life care. They’re crucial for maintaining quality of life throughout treatment.

An OSW can:

• Introduce you to specialized support groups for metastatic bladder cancer
• Provide individual counseling tailored to people with metastatic cancer by addressing concerns such as “scanxiety” or helping you make end-of-life decisions
• Access specialized networks of counselors who understand advanced bladder cancer

Digital platforms allow for 24/7 connection, which is vital for people with busy treatment schedules or limited mobility. But Sivendran recommends seeking out reputable groups that balance vetted information with emotional safety. Here are some things to keep in mind when choosing the right group:

• Check for a moderator. Ensure the group is moderated to prevent misinformation. “If someone says, ‘This magical herb is going to cure your cancer,’ the organization should have moderation to call out that the statement may not be evidence based,” she says.
• Choose trusted affiliations. Favor groups affiliated with known organizations, such as BCAN, ACS, and major cancer centers. These platforms often link to vetted medical content hubs.
• Step away when needed. You have permission to be choosy, says Sivendran. “If the community that you’re in is not a value add to your life, then that’s not the right community for you.”

• Connecting with people who truly understand the challenges of metastatic bladder cancer can provide emotional comfort and practical guidance for day-to-day life.
• Look for reputable organizations, whether virtual, in person, or hybrid, and make sure the group is moderated and provides accurate, trustworthy information.
• Find a group that adds value to your life. If a community doesn’t feel supportive or helpful, step away and focus on the connections that work best for you.