Bladder Cancer Survivor
- Diagnosed at age 53 with muscle invasive bladder cancer
- Treated with chemotherapy
- Had robotic surgery to remove his bladder, prostate, and reconstruct a neo-bladder
Seemingly at the top of his game in his career and personal life, Steve Baker didn’t really think much about being tired. He worked hard and traveled a lot for his work. The occasional blood in his urine gave him pause, but by the time he’d get to a doctor’s office to have it checked out, it would be gone. And so the story went for Steve for over a year, until August 2011 when the fatigue reached a peak… in the mile-high city of Denver no less… while Steve was traveling for work.
“The fatigue was awful,” Steve says. “By the time I got home I couldn’t even walk the dog.”
Steve and his wife Beata went to see a doctor near his home. Then they went to a critical care clinic. “We kind of thought he might just have walking pneumonia,” Beata says. But the doctors at the clinic drew blood and ran tests. They gave him a prescription for antibiotics, just in case it was pneumonia, and told him to head over to the emergency room.
“What they didn’t tell us was that it was urgent that we go to the emergency room right then,” Beata says. “They’d given us a prescription. We thought we had to get that filled and then follow-up at the ER when we got around to it.”
By the time they arrived home from the pharmacy there were several messages on their answering machine. It was the emergency room (ER) calling, wondering where they were. Steve’s hematocrit levels were very low. He and Beata went to the ER right away then, with a new feeling of apprehension.
“They wouldn’t let me walk around,” Steve recalls. “I was put into a wheelchair and went for X-rays and a CT scan.”
Still not all that worried, Steve says the doctors in the ER suspected his heart or lungs were the culprit. But when the CT scan showed a large mass in his bladder, he received a special test to look inside is bladder with a scope, called a cystoscopy, or cystourethroscopy.
“I spoke to several doctors who weren’t concerned,” Steve says. “Though, one doctor thought I probably had cancer. When we got the news, we had to stop and rewind,” Steve says.
Steve was diagnosed with stage II muscle invasive bladder cancer. “The doctor told me I’d have to have my bladder removed, but my first concern was scheduling my surgery so I wouldn’t be out of work,” Steve says, who is self-employed. “Could we do this in December?”
But Steve’s doctor assured him he would likely die from this cancer if he didn’t take care of it right away. “That brought home the seriousness of this diagnosis for me,” Steve says. In fact, he says it really sunk in about three days later. Latent shock.
“At 53 years old, I am not the typical older cancer patient,” Steve says. As with most cancers, there is no definitive cause of bladder cancer. Research has found many links between smoking, exposure to environmental conditions, heredity, diet, and other factors that increase a person’s chance of developing bladder cancer. Steve had no known risk factors for bladder cancer. He wasn’t a smoker and hadn’t been exposed to harsh chemicals in his line of work. Just one of those things. Bladder cancer is not a cancer many people have heard of before. However, it is the fourth most common cancer in men and among the top 10 most common in women.
“We asked what our options were for treatment,” Steve says. “My doctor at the time said he was a good surgeon, but I would need a device or a neo-bladder afterwards and he recommended I go to the best doctor in the state, Jonathan L. Wright, MD, MS, FACS, at Seattle Cancer Care Alliance(SCCA). There was a radical difference from the hospital I started at and University of Washington Medical Center (UWMC). Before, it was sort of laissez-faire; at SCCA and UWMC, that all changed.”
Dr. Wright wanted to treat Steve’s cancer aggressively. “Without treatment, muscle invasive bladder cancer is fatal,” he says. “However, if we are able to diagnose it before it has spread, our goal is cure. This is best accomplished by a combination of neoadjuvant chemotherapy followed by radical cystectomy. The combination of the chemotherapy followed by surgery has better outcomes than surgery alone. As a result, when we see patients with muscle invasive bladder cancer like Steve had, we approach it as a team and get our medical oncology colleagues involved in the treatment plan.”
Steve and Dr. Wright worked with Elahe Mostaghel, MD, PhD, urology medical oncologist, who administered four cycles of dose-dense MVAC therapy prior to surgery.
“We appreciated Dr. Wright’s being aggressive," Steve says. “I learned more in that first visit with him than at any other visit. He had a plan. He knew exactly what he wanted to do, and the timeframe to do it in.”
The plan was for three to four rounds of chemotherapy, three weeks off to recuperate, and then surgery by mid-December.
Under the care of Dr. Mostaghel, Steve received a PICC line, a peripherally inserted central catheter that gives intravenous access for a prolonged period of time. Chemotherapy began. Two days later, Steve began to develop pain, swelling, and nausea. “The chemotherapy nurse at SCCA saw me and knew just by looking at me that I had blood clots,” Steve says.
Cancer to cardiac patient
Steve was admitted to UW Medical Center’s Cardiac Critical Care unit for treatment of his blood clots, quickly turning him from a cancer patient into a cardiothoracic patient.
Once healed, he could no longer use a PICC line and received a portacath, or port, which is a small medical appliance that is installed beneath the skin. Consisting of a catheter that connects the port to a vein, the port is under the skin and drugs can be injected into it and blood samples can be drawn through it many times, usually with less discomfort for patients than regular needle sticks.
Steve received the rest of his chemotherapy treatment and had surgery on December 24. Dr. Wright removed his bladder and constructed a new bladder, or neo-bladder, from reconstructed bowel tissue. A regional leader in robotic bladder cancer surgery, which allows for a minimally invasive approach to bladder cancer surgery, Dr. Wright performed the bladder removal with the DaVinci Robot.
In a man, radical cystectomy also includes removal of the prostate. In Steve’s case, incidental prostate cancer was also detected when the prostate was analyzed after surgery.
On December 27, the pathology report on 17 lymph nodes came back clear. “That’s when we celebrated Christmas,” Steve says.
“The care was fantastic,” says Steve, who was worried that the holidays wouldn’t be the best time for surgery. “Dr. Wright came and spent two hours with me on Christmas day. And he has a couple of young kids at home!”
Keeping it together
Steve and Beata were extremely organized throughout his treatment. They had a spreadsheet. They always had questions for their doctors.
“I was always after the mean, the average. We didn’t understand that every patient is different,” Steve says. “As we developed a relationship with Dr. Wright and his team, we came to understand this better, and each other.”
When it came to doing research on the internet, Steve says, “It’s a mixed blessing, like drinking from a fire hose. SCCA dealt with what I had, not with hypotheticals.”
Steve is “trying to find the new normal without a bladder,” he says. “Anecdotal evidence is helpful and terrifying. There just isn’t a lot out there about bladder cancer and neo-bladders.” Every three months, Steve goes in for blood tests and CT scans. At the two-year mark, he’ll go in every six months. “I’m on a month-to-month lease for two to five years,” he says.
Steve says he’s never met a person who says cancer isn’t a life-changing experience. “With the chemo, I was reset at a cellular level,” he says. “I’ve had a very positive experience, but I wouldn’t want to do it again. I try to look at life differently and try not to fall into old ways. It definitely makes you more compassionate.”
Life after cancer
Steve and Beata are scuba divers. They hope to get back to that soon and it shouldn’t be a problem according to Dr. Wright. Steve also enjoys riding motorcycles for the sense of freedom and fun.
“I would recommend SCCA to anyone who has access to it,” he says. “It’s world-class. You owe it to yourself to check it out, no matter where you live.”