Bladder cancer survivor hopes to raise awareness among women

Bladder cancer is about four times as common among men as women. That doesn’t mean that women don’t get bladder cancer, though.

Unfortunately, as Ruth Sykora discovered, it can take longer for a woman to be diagnosed with this disease, likely because the symptoms are similar to much more common problems like urinary tract infections.

“That's a common story for it to take the better part of a year for diagnosis,” she said.

Now, more than six months after life-changing surgery at MUSC Hollings Cancer Center, Sykora feels that she was lucky. Although it took a while to get a diagnosis, once diagnosed, she was quickly treated and is now cancer-free. She also got to experience the warmth and love of the community as friends and family rallied around, donating to a GoFundMe to keep her afloat when she couldn’t work for six months and accompanying her to doctors’ appointments.

“My kids are in their 20s, and I feel like one of the silver linings in this is that I was able to see who they really are,” she said.

They had been busy “doing their own thing” as young adults. “Suddenly,” she said, “it was like they were just there with me nonstop. That was amazing – a gift.”

Bladder cancer symptoms

Symptoms of bladder cancer tend to be subtle – until they’re not. Blood in the urine is the most common early sign, although Sykora never experienced that. Instead, she had pain that felt like a urinary tract infection, or UTI.

Sykora, who typically prefers alternative health care and keeps her interactions with M.D.s to a minimum, tried at first to address the pain with natural treatments.

But in January 2023, “There was one day where I just was having extraordinary pain,” she said. “I went to an urgent care, and right away, they said, ‘Oh, this is probably a UTI.’ So they put me on antibiotics and referred me to an OB-GYN.”

“My father died of bladder cancer, and it never even occurred to me that I might be dealing with bladder cancer – the denial was so strong. I wasn't able to advocate on that level for myself.”

Ruth Sykora

She embarked on a series of trips to different providers, trying to find a solution.

In retrospect, she can see some blazing red flags.

After being a steady weight her whole adult life, she inexplicably dropped 15 pounds in a year. She attributed that to taking up swimming, even though, she said, “It didn’t really add up.”

She had smoked for 15 years when she was young. Smoking is one of the key risk factors for bladder cancer, but it had been 35 years since she smoked, and Sykora didn’t consider it.

Most importantly, she had a family connection.

“My father died of bladder cancer, and it never even occurred to me that I might be dealing with bladder cancer – the denial was so strong,” she said. “I wasn't able to advocate on that level for myself.”

Research into the family connection to bladder cancer is still underway. In some cases, the connection could be because family members are exposed to the same environmental toxins. In other cases, inherited genetic conditions make bladder cancer more likely, although genetic testing didn’t uncover any of those known inherited mutations in Sykora’s case. It’s possible that there’s a mutation that has yet to be identified that could make people susceptible to cancer.

Sykora was diagnosed when she ended up in the office of urologist Barry Lifson, M.D., who performed a cystoscopy and biopsy in his office.

Shortly thereafter, she was told that the cancer was advanced enough that her bladder should be completely removed.

Comprehensive care and adapting to a new normal

At Hollings, Sykora was part of a comprehensive program where specialists work together to provide care. Because Sykora wanted to avoid chemotherapy, urologists Robert Grubb, M.D., and Stephen Savage, M.D., worked together to determine who could operate as quickly as possible, given the aggressive nature of bladder cancer. Savage took the case, operating in August to remove the bladder and perform a hysterectomy.

Meanwhile, oncologist Theodore Gourdin, M.D., had genetic testing performed on the tumor. Tumors, because they are composed of mutated cells, can end up having a different genetic profile than the person they are attacking.

In this case, the tumor’s genetic profile indicated that it would be vulnerable to a specific immunotherapy treatment, so Sykora comes in monthly for an immunotherapy infusion intended to prevent any remaining microscopic cells from gaining a new foothold.

“One of the great benefits of our Regional Health Network is the opportunity to bring the cutting edge of cancer care directly to South Carolina patients across the state. As with other cancer teams, the genitourinary cancer group has worked with surgical oncologists at Florence, Lancaster, Orangeburg and Kershaw to bring genetic testing to appropriate cancer patients.”

Stephen Savage, M.D.

This precision approach to determining the proper treatment is something that Savage and the rest of the team are working to bring to the hospitals in the MUSC Health Regional Health Network.

“One of the great benefits of our Regional Health Network is the opportunity to bring the cutting edge of cancer care directly to South Carolina patients across the state. As with other cancer teams, the genitourinary cancer group has worked with surgical oncologists at Florence, Lancaster, Orangeburg and Kershaw to bring genetic testing to appropriate cancer patients,” he said.

Sykora is grateful that the immunotherapy treatments have been fairly easy, as she’s learned through online support groups that that isn’t always the case for everyone.

“I have been so lucky with that because I go in, I get the 45-minute infusion, and I walk out and feel fine,” she said.

Sykora, who has worked for 34 years as a massage therapist and now teaches meditation, said she’s back to work three days per week, which feels like enough for now. For 20 years, she’s been part of Satsang Yoga Charleston, a community that rallied to support her during treatment, and so she’s grateful to be able to be physically active in a way that’s meaningful to her.

There are, of course, challenges. Living without a bladder means that she’s had to adapt to a urinary diversion system, something that was daunting at first.

“Getting used to the bags and all of that was really hard. There was a period of time where I thought, ‘I can’t possibly do this. This is not going to work,’” she said. “But lo and behold, you get used to anything. It’s really not that bad, and the stoma nurses are incredible.”

Now, finally, she actually feels well.

“I didn't sleep for a year. I was awake every hour in pain for the last six months,” she described of her time before surgery. “And now I have no pain. And I sleep.”

Giving back

A Facebook group for women with bladder cancer has been both supportive and eye-opening for Sykora. Reading about the struggles of other women has made her feel lucky in her course of treatment but has also inspired her to raise awareness of this cancer among women.

To that end, she signed up as a team captain in the Bladder Cancer Advocacy Network’s annual Walk to End Bladder Cancer. Her team raised more than $3,000 and walked in Washington, D.C., on May 4.

These dollars will go toward the network’s activities in providing support to bladder cancer patients and funding researchers across the country. It’s a way for Sykora to make a difference for others, after so many helped her through the past year and a half.

“I’ve had a lot of angels on the way,” she said. “I have never been so surrounded with love in my life.”

Related Links

More MUSC Hollings Cancer Center news

Subscribe to our newsletter

Hollings Horizons magazine