Over half of the men in the study had disease at intermediate or high risk of spreading to other parts of the body. They needed to choose either surgery or radiation. The remaining 45 percent, with cancer at low risk of spreading, also considered active surveillance. The study followed all of the men for three years.
Men who had had surgery to remove their prostates were more likely to report sexual dysfunction and urinary incontinence than men who had radiation or underwent active surveillance. Radiation caused slightly more bowel dysfunction than surgery and was more likely than active surveillance to decrease sexual function.
What Patients Care About
Surveillance wasn’t an option for Conwill because of his cancer’s risk of spreading. He had his prostate removed with robotic-assisted minimally invasive surgery. “I lost my sexual function, which I knew might happen,” he says. “That loss has been extremely difficult for my wife and me. But we would choose surgery again, for the same reason: it met our preference of minimizing the risk of cancer recurrence.”
Since his surgery, Conwill has become heavily involved in several cancer-related projects at Vanderbilt, including partnering with Penson on his PCORI-funded study and talking through options with men newly diagnosed with prostate cancer. “People want to talk to someone who had gone through the decision-making process,” he says. “I help them frame the questions to ask their doctor to make sure they’re getting what they really want, to help them improve their outcomes.”
I had treatment choices involving different outcomes to consider.
Conwill and other patients assisted Penson’s study by helping to write the funding application, determine what outcomes to study, look to future steps, and perform other activities. “Ralph’s biggest line is always, ‘But do the patients care about that?’”
Conwill and Penson are continuing to work on the problem. With funding from the Agency for Healthcare Research and Quality, the team will collect information about how the same men are doing five years after their diagnosis. They are interested in developing an online tool to bring this updated information to patients who can use it to make decisions based on what they value the most.
“I keep asking the questions: will patients understand it? Will doctors have time to communicate it in words patients can understand?” Conwill says. “We need to get the data out there to help patients make a more informed decision.”
Generating Critical Patient-Centered Information for Decision Making in Localized Prostate Cancer
Principal Investigator: David Penson, MD, MPH
Goal: To gather and organize medical and patient-centered outcome data three years after the diagnosis of localized prostate cancer to help newly diagnosed patients choose treatments best suited to them.
Posted: June 16, 2017