Pat O'Neal knew quite a bit about hospitals and health care. He worked as director of outreach at Primary Children's Hospital, then in outreach services at Intermountain Healthcare for many years. When he was diagnosed with prostate cancer in 2017, he had access to the best treatments available.
His doctors performed a robotic prostatectomy (RALP) in April 2017. They felt confident they got all the cancer cells in the procedure. Pat started planning a "cancer-free" party for August, but just before the celebration, doctors called and told him the bad news: they found cancer cells that metastasized, or spread to other areas, but weren't entirely sure where. His bloodwork indicated the presence of the cancer cells, but doctors couldn't see anything on CT scans or MRI.
He still held the celebration but made it a "Sturgis send-off" before he left for the famed national motorcycle rally in South Dakota. After returning from the trip, doctors located the cancer in three lymph nodes in his left groin area. His treatment plan included a year of hormonal therapy, followed by 25 days of radiation therapy. During the radiation in December 2018, both of his kidneys suffered damage, and O'Neal started to notice issues with urination.
"My doctors could see there was a lot of damage, so they put stents into the ureters, but that didn't work," he said. Ureters are small ducts, or tubes, that move urine from the kidneys to the bladder. They are separate from the urethra, which expels urine from the bladder.
When the stents didn't work, the next treatment option was nephrostomy tubes. These are small (about the size of an IV tube) and inserted through the skin directly into the kidneys. They bypass the normal system of urine traveling from kidneys to the bladder and leaving your body when you use the bathroom. The tubes take urine directly from the kidneys to small bags on the outside of the body. Technically, someone can have nephrostomy tubes for as long as needed—years or even decades. But after several months of dealing with the tubes, Pat didn't feel like they were a good long-term solution.
"I had open wounds that I had to dress regularly, and every two months I had to go in for surgery under anesthesia to get the tubes changed," O'Neal said. Other frustrations included tubes that got twisted and were difficult to manage, along with the inability to sleep or lay comfortably on his back where the tubes came out.
O'Neal talked to his urologist about other options. The urologist mentioned Jeremy Myers, MD, chief of the Division of Urology at University of Utah Health. He was the only surgeon within several hundred miles performing a reconstructive surgery that could repair this type of ureter damage. U of U Health urologists often see patients who have damage after radiation therapy. They also see patients with more rare conditions, including scarring in the ureters.
"Radiation is an essential part of cancer treatment for many patients, but it's difficult to predict who might get these types of radiation-induced injuries and scarring," Myers said. For most men, the damage doesn't show up right away. On average, it can take eight years to present—long enough that many don't immediately connect their symptoms to their prior radiation treatment, which can delay diagnosis and treatment.
Right now, researchers at U of U Health are compiling a database of Utah residents who get radiation therapy as part of their prostate cancer treatment. They follow these patients for years to see which men experience a bad outcome. Eventually, they can use this data to better understand possible genetic links or environmental factors that might increase the risk of ureter damage from radiation.
When O'Neal met with Myers, he learned that at least half—and maybe as many as two-thirds—of his ureters were damaged on both sides. Myers recommended a reconstructive surgery to replace both ureters with part of O'Neal's small bowel. To do that, he would create a "Y" shape with a piece of the small bowel, connecting the right and left kidneys to the bladder.
Because of the risks, O'Neal wasn't entirely sure he wanted the surgery at first. Prostate cancer risks increase with age, so most of the men who have this type of damage from radiation therapy are older (O'Neal is over 70). Men with other health conditions, such as diabetes or heart problems, may not be eligible for the surgery because of the elevated risk. About five percent of patients do not survive after the surgery, which is a much higher rate than most surgeries. That's partly because of the complexity of the procedure itself—and partly the result of many patients being older and having other health conditions. Other complications include bowel blockage, urinary tract infections, or sepsis.
That's why it's so important to have an experienced surgeon who does multiple reconstruction surgeries each year. Most urologists would see only a handful of patients who need such complex surgeries in their entire career—and definitely wouldn't perform multiple reconstructive surgeries in the same year. When you have a surgeon with less experience, the risk of errors and complications go up. As an academic medical center, U of U Health gets referrals for complex conditions like bilateral ureteral reconstruction from patients throughout the Mountain West region. Our urology specialists perform dozens of these procedures each year with very good results.
O'Neal discussed the risks and felt comfortable with Myers' experience and expertise. Then COVID-19 hit and he put off his decision a few more months. About a year after first hearing about bilateral ureteral reconstruction, he decided that the benefits outweighed the other risks, and he scheduled the surgery for September 2020.
Myers performed it as a "traditional" procedure, cutting a 10-inch incision and reconstructing the ureters by hand. U of U Health surgeons can also perform this surgery robotically. They make small incisions and insert robotic arms with tiny tools to rebuild the ureters. They see the entire procedure through a small camera, while controlling the robotic arms from a console in the operating room.
Because of the extent of O'Neal's reconstruction, robotic surgery was not an option. His procedure took seven hours, and he had to stay in the hospital for 11 days to recover.
"On a scale of one to 10, this is about a nine for how much it impacts a patient," Myers said. "Pat is a tough guy, and he's been dealing with this for so long, so fortunately he recovered relatively well after getting out of the hospital."
For the first month, O'Neal had catheters (tubes) to drain urine out of his body, giving the reconstructed parts time to heal. Then the surgeon ordered X-rays and checked to make sure the entire area was healed and watertight so nothing would leak out. The catheters were removed, letting the reconstructed ureters go to work.
"Dr. Myers said it would be a three- to six-month recovery, and I thought it would be much easier than it actually was," O'Neal said. He was sleeping in every day until 10 or 11 am and wasn't getting around very well. He lost about 20 pounds during his recovery. After a few months, he made a commitment to regain his health and started exercising and eating healthy. He worked with a personal trainer through the POWER Program at Huntsman Cancer Institute. He regained the 20 pounds he lost, plus another 10 pounds of muscle. Now he goes out most nights to walk his dog with a group of people several years younger than him—he's 75 now—and never struggles to keep up. In fact, he's often the one pushing the pace.
Despite all the risks, O'Neal is glad he decided to go ahead with the surgery and hopes more people learn about its availability at U of U Health. "Once I learned how good Dr. Myers is at [urinary reconstruction] and his skills and experience, it was easy," O'Neal said. "I felt cared for and listened to, like they were talking to me peer-to-peer. We collaboratively made the decisions. For me, that is a top priority in my care."