Women's Health

Living with urothelial bladder cancer



Karen Roy had previously survived an armed robbery that left her paralyzed at 19 and the death of her husband, which left her a single mother of three teenagers at 47. Then, at age 53, he was diagnosed with urothelial bladder cancer (UBC).

“When you went through as much as I did – and I think I handled it pretty well – I thought I was due for a break,” Roy said. “I had to rally for another fight.”

Like Roy, nearly 20,000 women in the United States will have their world turned upside down by bladder cancer in 2023. Understanding how UBC can affect your life can help you cope.

Bladder cancer treatment is expensive

UBC treatment can be intense and exhausting for patients, explained Sarah Psutka, MD, urological oncologist and associate professor at the University of Washington School of Medicine. This can include everything from repeated minor surgeries to chemotherapy, immunotherapy, and removal of the bladder (called a cystectomy).

“In addition to that, there is a [financial burden] associated with these frequent office visits and procedures,” Psutka said. In addition to covering the cost of the treatment itself, many patients – especially those who have to travel for care – also pay indirectly. “It’s time for work stoppage, it’s time for their loved ones who travel with them outside of work.”

Bladder cancer and mental health

The challenges of diagnosing and treating bladder cancer can weigh heavily on emotional well-being. “It’s a lot for patients to go through,” Psutka said. “And that has major implications for anxiety, depression, worry, treatment burden, and ultimately mental health.”

One of the many reasons people with bladder cancer may face mental health issues has to do with the possibility of their cancer coming back.

The five-year survival rate for bladder cancer is 77%, which means that about 8 out of 10 people live at least five years after their diagnosis. But bladder cancer is more likely to recur than any other type of cancer. Even after successful treatment, the recurrence rate is between 50% and 80%. People with bladder cancer are also at increased risk of later developing certain types of new cancers (called second cancers).

This means that many bladder cancer survivors may feel like they are walking around under a dark cloud of anxiety and fear that their cancer will return.

In a survey of nearly 600 people with bladder cancer, about 6 in 10 said they were worried about their cancer coming back, and about 4 in 5 said they had searched online for ” mental health and bladder cancer”.

Since so many women are also caregivers, women with bladder cancer may also experience the particular kind of anxiety that stems from worrying about who will look after their loved ones if something happens to them. .

“I am the sole parent of three young adults and I help my mother who has just been diagnosed with dementia,” Roy said. “I joke with my family about how I can’t die.”

How mental health can affect bladder cancer treatment

Although mental health is understudied in relation to the diagnosis and treatment of bladder cancer, Psutka has seen how a patient’s mental well-being can affect how they handle treatment.

“We know that mental health has major implications for how well patients tolerate therapy,” she said, adding that a patient’s level of endurance and ability to bounce back can impact their quality of life during treatment and beyond.

“I think this is probably an area that deserves a lot more research and attention from a research perspective,” Psutka said. “And that’s one of the reasons we really have to pay close attention to the mental health of our patients while they’re in therapy and try to support that.”

Getting through bladder cancer treatment

Continuing to work while undergoing cancer treatment can be incredibly stressful, especially if you feel like you have no choice.

With his entire family dependent on his work for health insurance, Roy was pressured to continue working while undergoing treatment for bladder cancer. Although she is able to do much of her work at home, it is not easy to keep up.

“There’s this feeling of ‘I’m the only insurer on my insurance, so I better not get really sick,” Roy said. “I have a lot of fear and anxiety about it.”

Navigating Relationships During Bladder Cancer Treatment

For people with bladder cancer, managing romantic relationships can be a challenge. Roy had just started seeing someone new when she was diagnosed. They went from spending their weekends at music festivals to spending them at the cancer treatment center.

“We were having fun,” Roy said. “Things got serious very quickly.”

Insecurity about bodily changes during and after treatment can also affect other types of relationships. People with bladder cancer may withdraw from friends and decline social invitations in favor of staying home.

Stand up for yourself and connect with others

Having learned at a young age the importance of advocating for one’s own health care, Roy – who hosts a podcast called “Life Possible with a Disability” about navigating life with a disability – understands the importance of finding a provider of health care who will listen to you.

“Find a doctor who is invested in your well-being,” she said. “Because it’s really about your relationship with that doctor and whether or not you feel comfortable with what he’s telling you.”

Roy also strongly believes in leaning on others for support. “If people offer to help you, accept them,” she said. She also encourages women living with bladder cancer to contact organizations such as the Bladder Cancer Advocacy Network that can connect them to support groups and other resources.

“Talking to other people who have had the same experience is really helpful,” Roy said.


Bladder Cancer Advocacy Network

This resource was created with the support of THANKS.

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