Answering the Call for Bladder Cancer Support

HealHeal Spring 2023

Bladder cancer survivors face a bevy of challenges post-treatment, but an immediately available service strives to ease the burden.

Survivors of bladder cancer face myriad issues, with treatment for bladder cancer being among the most expensive. Many patients face body image distress and shame adjusting to life with a urostomy (a procedure that redirects urine into an external bag as opposed to the bladder), changes to their sex life and a more invasive screening procedure that heightens scan anxiety.

For patients recently diagnosed with bladder cancer or going through active treatment, there are plenty of options to help them manage their disease or finances. But the resources survivors and caregivers would benefit from are largely psychological and involve social support, which doctors and advocacy networks are not always equipped to provide.

The Bladder Cancer Advocacy Network (BCAN) is changing that. Their recently launched call center gives bladder cancer survivors, their caregivers or those who have lost a loved one to bladder cancer the opportunity to call and be connected to a trained social worker who can either counsel the individual then and there or connect them with local resources.

BCAN has always catered to the needs of patients with bladder cancer and has tried to help survivors and their support systems as well, but they now have greater resources to address the latter group.

Stephanie Chisolm, director of education and advocacy at BCAN, described the benefits of including members of a patient’s support system as well as survivors.

“Most (patients with) bladder cancer tend to be on the older side,” Chisolm explained. “It may well be that some of those caregivers are adult children, who may or may not live nearby, which can be a big concern. I think this is another pivot point that can help support somebody whose parents might be living in Florida, but they live in Chicago. They can find out about the resources that can help their parent in Florida or find out the things that can help them as caregivers for the family... (Being a caregiver) does present its own challenges, in the sense of having to take time off from work to get a parent to treatment or to help with the regular maintenance that that parent needs. Because they’re not well, those are things that are very significant. And I think having this social work network can help patients and their loved ones that are helping them find the services that they need. They’re out there, but not if you don’t know what they are.”

BCAN also plans to use the data collected from the call center to inform future events that will cater more directly to the needs of callers. “Why did people call? If we’re seeing that a lot of patients are calling because they’re in distress, (that can be addressed.)” said Chisolm.

The call center is currently active and operates on Eastern Time, but individuals in other time zones who may call at other hours can leave a message and receive a follow-up call at any time. The number is 833-275-4222.

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